Miss Charlie

Settling in...

2012-01-17T12:05:00.004-05:00

Well we are mostly settled in, but with any apartment, there are a few quirks to work out. We had issues with our heat and now need a new seal on the front door. Overall, it's good though. I got curtains on all but the kitchen window and everything is unpacked.

Here's Adrian at his lego table (from the Family Fun magazine):

Charlie's room once I got it completely done. I'm LOVING the tall bookshelf for all of her stuff! It really helps to have stuff going UP instead of OUT. I put up a hook for her pump bag to hang from, and of course hung her white board with all of her important info.

You know it's time for a haircut when 1 day without a shower does this:

Now that I have a little more free time I'm trying to get back to my green ways as much as possible, and throwing in some new stuff as well! This is my first batch of homemade laundry detergent. It costs a little over 1 cent per load vs up to 18 cents for commercial. So far so good! I've only used it on smelly bathroom rugs, but it worked. I had washed them in Tide, but they still stunk like pee so I gave the homemade a try and they were almost back to normal. I threw some vinegar in the rinse and I'm sure they'll be good as new.

I'll also be trying to make my own bleach and I'd like to make a few wool balls for the dryer. Generally I try to stay away from animal products, but I know I have some leftover wool yarn somewhere and it HAS to be better than dryer sheets. I'm pretty sure those have animal by-products as well. Maybe when I run out of wool, I'll go find some used wool sweaters at a thrift store to unravel. Minimal impact!

Eventually I'm going to try homemade toothpaste and shampoo as well. I'm a bit disheartened by the commercial products. I've been using them all my life, always being reassured that this is the best thing for me....but I'm 28 and have teeth rotting out of my head. To be fair the rotting started a long time ago. It makes me wonder if all the "conventional" wisdom is actually very wise at all. My hair is horribly greasy only 12 hours after a wash, and I've had cavities at every dentist visit since I was a kid. Yup, time to try something new!

I've been on this path a long time. I think the first time I said "wait, is this really good for me?" was with disposable pads back when Adrian was a baby. I'd already chosen cloth for him. I noticed other women were choosing cloth for themselves. I thought I'd never be that crazy! Then I tried it and....never went back. My skin is better, my periods lighter, my cramps are almost non-existent now. Sometimes it's REALLY worth trying something "strange" even if you might weird a few people out. I know people have caught glimpses of my pad stash, or my homemade deodorant. They think it's weird. I know because they tell me. LOL And I just say "don't knock it till you've tried it!"

I never tried the homemade laundry soap until now because I didn't think the savings would be worth it. The extra time, the extra storage. A bulky 2 gallon container and boxes of supplies vs a cute little bottle of Tide? Ha! But now, I'm thinking it IS worth it. It makes me feel good, if nothing else.

I'm going to get Charlie back into cloth part time. She outgrew every cover I had for her. I ordered an XXL prorap for her and if it fits with room to grow I'll order some more and then probably use the measurements to make a few of my own. I have a friend sending me 8 XL fuzzi bunz diapers. I think they should still fit for some time. I partly feel bad because we are soon moving Charlie up yet *another* size...into youth diapers. And let me tell you, these things are definitely more wasteful. They are bigger, wider, have more "stuff" inside for extra absorbancy. I feel the need to at least TRY not to be so wasteful.

I'm still trying to get back into a homeschool routine with Adrian. It is NOT going so well! Thankfully, I know he's at least learning *something* from ipad apps like this:

He and his buddy learned about the seed cycle. They used sunshine and water to make their flowers grow. Then they made the bee pollinate them. Then when new seeds fell, they planted them and started all over until they had a whole garden!

Happy New Year!

2012-01-01T20:02:00.004-05:00

Things are going well here. I got all moved into our new apartment. I still have to go back to the old one tomorrow to clean and turn in my keys, but then I am DONE! I worked all day getting the new one set up. The good news is, it's not nearly as cramped as I thought it would be. Yeah the rooms are smaller, and yeah I'm giving up having my own room, but we're not going to be tripping over each other or anything. Adrian's room has his loft bed, with his "big" toys underneath, Charlie's old dresser (half for him and half for me), his new Lego table (he hasn't seen it yet!), plus all of his toys in the closet. His clothes and my clothes fit easily with lots of room to spare (it helps that I've been purging lots and lots of stuff!). Charlie's bed takes up most of her room, but there's plenty of walking space around the bed. She'll have a nightstand on one side and tall pantry cabinet on the other, that will hold all of her machines and supplies. Her cube organizer had to go in the closet which is a shame since it's so cute! Her bedroom set is absolutely adorable though!

The living room is our computer/craft/homeschool area. I got rid of the TV, since we really just use netflix on the computer anyway. I ordered two saucer chairs and got rid of the futon. It's not going to look like a "proper" family room, but we never had a use for something like that anyway. In the old apartment we had a nice, big living room, with a futon and TV and we just never hung out in there! I'm hoping this new set-up will be more friendly for our odd little family. :-)

I've had to spend a little money getting everything we needed to make this smaller space work for us, but I did make money selling all the old, bigger stuff. I just ordered a 2 seater breakfast table and a bathroom tower to go over the toilet (there is NO storage in the bathroom!). I'm just amazed that it's all coming together so nicely. I was afraid I might have been making a mistake trying to cram us all in there. So far, so good. I've been working on minimizing our possessions for a while now, so I'm sure that has helped.

Ok so it's New Year's Resolution time! Let's look back at last year first. I didn't lose the last 15 lbs, but I didn't gain anything either. I blame the lack of weight loss mostly on the state of my teeth. I've had a really difficult time eating right because of the pain...but that brings me right to the next goal I had...getting my teeth fixed! I qualify for medicaid now, so it's happening. It's going to take 3-4 appointments probably (yikes!), but it's getting done. So you could say I partially succeeded in that resolution.

Onto the next goal...decluttering and organizing. I have to say I did GREAT on this one. I'm still using my Home Management Binder. I got rid of a TON of stuff. I very rarely misplace something. Well, except my keys. I tried to make a permanent home for those on a hook by the door, but they never end up there. One day I will figure out what to do with them. LOL Unnecessary spending...I didn't do so well with this. People always say, when you have money, you spend money! Ain't that the truth! And it's not like I had tons extra, but it was nice to be able to just go spend $20 or $40 when I wanted and not worry that it was "bill money". I will meet this goal by necessity, though, since I will be staying home with the kids as of next week.

Charlie goals were pretty much met. We don't know why she had GI pain or why it just went away on it's own one day, but she's perfectly fine in the GI department now. The only "pain" we can see that she has is with an autonomic storm, but we can handle it with clonidine, and we are on our way to controlling the storming as well.

We've hit a few bumps in the road with Adrian and the homeschooling. He's a challenging one, that's for sure. He's started seeing a psychologist for his anxiety. I've put off turning in the paperwork to his pedi for the ADHD stuff. Subconsciously I must not want him diagnosed. The papers are right there and I drive by the pedi's office almost daily. I don't know. Maybe one day when I feel like strangling him I'll go and turn it in. LOL He's doing great academically though. He sucks at deskwork, but he's bright and intelligent and that makes up for everything else I think. He's reading at about a 3rd grade level, halfway through his first grade year (and that's with us taking 2 months off due to illness and moving!). His math skills are easily 2nd grade, if not almost 3rd grade level. Don't ask me about writing and spelling. I have high hopes that he will one day write and spell. LOL

So that's last year.

This year I do still want to get in shape, even if that doesn't mean losing weight. I want to find something I can do from home to bring in what little extra income I need. I really just feel I need to be home with the kids right now. I want to focus more on Adrian's stuff. Whether that means having all his "quirks" diagnosed, or just teaching him how to deal with things better, I don't know. We'll see. And I want to get Charlie communicating better, either through eye gaze or using her two "words". Or both. :-D

Here's to an exciting new year!

Lots of changes!

2011-12-22T16:34:00.004-05:00

Sorry I haven't had time to update but things have been crazy here! Firstly, nothing has really changed with Charlie. We are still doing the CPAP here and there to help control the autonomic storming. We did have a visit in the sleep clinic and that went well. The doctor thinks a trach could help a lot with her problems but he wasn't pushing us in one direction or another. He said he had to make the trach decision for his dad and chose not to do it. Of course, we all know that's very different than the decision I have to make. We didn't do the sleep study. We just didn't feel it was relevant to this decision.

Secondly, I've decided to move us back into a smaller apartment. I LOVE my apartment, I really do. It is PERFECT for us. But the stress of working my current job is getting to me. I need to be home with my kids more. Plus, Adrian and I are bringing every illness under the sun home to Charlie. It just isn't worth it. So I will be quitting my job and supplementing my income with....something. Not sure what yet. But I only need a couple hundred dollars a month on top of what Charlie's SSI brings in. Anything is better than what I'm doing now. I was going to give it about two more weeks then put in my two weeks notice, essentially saving all of January's income, but shit hit the fan with my boss today and she knows how I really feel now, so honestly it's going to take a lot of willpower on my part to drag myself out of bed tomorrow and go in there. I'd really love to just leave them high and dry. And if anyone at work is reading this (you know who you are)...just go away. I know you don't actually care about Charlie or my family...just go the hell away!

Moving on... (LOL)

We already did our Christmas a little bit early this year. I wanted to get it over with and get everything put up before the move. So far, so good. Adrian LOVES his new DS. I remember my first game boy and how excited I was to get it. I used to play Zelda for HOURS on that little black and white screen. LOL His games are much cooler. No Zelda though. I need to fix that. ;-) Charlie's new bedroom stuff will, of course, be put up after the move. So we have to wait just a leeetle bit longer to see how it all looks together. Aunt Sherrie sent the matching rug, so I think she has the whole set now.

Sleep clinic and sleep study scheduled!

2011-12-06T00:30:00.007-05:00

Charlie's appointment in the sleep clinic is December 14th. Then we are going to drive back the same night and do the sleep study. Check in time is 8:30. That ought to be fun with a child whose bedtime is 7:00. and it takes like an hour to get all the stuff put on her and get her settled in, so we're looking at 2 1/2 hours past her bedtime. Fun!

I'm so thankful to finally be understanding this autonomic stuff. I really SEE now how her body responds to stress. She had her first storm since she's been using the CPAP. Her nurse put the CPAP on in the early afternoon for a couple of hours (we do this because she has a tendency to storm in the afternoon and we are trying to prevent it), then put it on again when she saw Charlie was heading for a storm. It didn't stop it. But I didn't go "oh well hell, I guess this isn't our answer" and threw out the whole theory. I recognized she was stressed in another way. Insurance was giving us problems about covering her Prevacid (again) and she went without for about 4 doses. She was in pain. Pain that stressed her. Stress that sent her into a storm that the CPAP wasn't going to fix, since it wasn't her breathing that was the problem. After her dose of Prevacid, it took about 2 hours, but her HR went back to normal.

I feel like a freaking genius. LMAO

Anyway, wish us luck with her appointment. If nothing else, I hope her study shows that she needs the CPAP and we'll get to keep it. I'd like to keep playing with it to figure out what works for her. I'm also eager to talk with the doctor about long-term breathing support. I remember liking this doctor and thinking he really "got" these kids.

We pulled out the Car Seat Poncho and I'm happy to say she still has tons of room to grow, even after her 9 month long growth spurt. I love her face. She looks like she's saying "Seriously mom!?" LOL

I found this pic in my phone. I forgot her nurse had sent this to me. This was from probably from 2 months ago. So pretty!

PICU stay!

2011-11-27T10:30:00.004-05:00

Well we've had an eventful week! Last Saturday, Charlie spiked a temp and needed oxygen...the usual with any illness. I knew it was an illness and not autonomic because it didn't go away with her night time dose of Clonidine. So on Sunday I took her in because she was getting pretty bad.

She was needing more support than just the high flow mask could give her, so they stuck the CPAP on her and she went up to the PICU. Her labs came back positive for Rhinovirus and Human Metapneumovirus. Fun, fun! (not)

This is the first time she's needed more than the high flow mask for an illness. Of course, she's trying to beat TWO illnesses, but still, I hate that she needs it.

But here's the catch. Remember how she's been having so many more autonomic problems? She's been full-blown storming 3 or 4 times a week. Since she's been on the CPAP, she hasn't stormed once. The most she's had is a little face flushing and that was AFTER they decreased her oxycodone dose (long story).

Apparently, the fact that she has to work so hard to breathe all the time could be CAUSING the storming, not the other way around like I thought. I took her home on CPAP. Her doctor and I both thought she'd get better care at home and so he ordered the machine and we took her home by ambulance on Friday since the machine is not portable. She might take a while coming off the CPAP and goodness knows a two week PICU stay doesn't benefit anyone! Can you imagine how much Medicaid has to pay out on that? Yikes! She's doing great at home. I'm considering this a good time to "experiment" with this CPAP/autonomic theory. Her Oxycodone dose is down, her storming has stopped. I'm not trying to wean her off CPAP just yet. I want to see what happens.

Then we have a lot of talking to do with her doctors. And I'll have a lot to think about. Really, I never imagined I'd do a 180 on how I feel about breathing support. But I've *always* been all about quality of life. And storming 3+ times a week and being on high doses of narcotics is NOT better for her quality of life than even something as invasive as a trach. If she had a trach and could come down on her meds and not storm, THAT is a better quality life. She's absolutely fine and happy with this mask strapped to her face (in fact she gets mad when we take it off because she knows it is what is helping her breathe) so I have no reason to believe she'll be upset with a little piece of plastic at her neck.

Anyway, here she is, happy to be home!

So I was cleaning out my closets the other day....

2011-11-20T20:47:00.002-05:00

And I found a little pink bow. It looked familiar. There was glue on the back of it. I vaguely remembered a nurse gluing a bow to Charlie's head while she was in the NICU. So I hunted down a picture of her with the bow in her hair. It matches! I don't know how this bow survived the trip home and 3 moves in 4 years. Oh well. I'm going to keep it in a safe place now. A friend suggested adding it to a scrap book. I've never been good at scrap booking, but I also found a box full of scrap book supplies from way back when I thought it looked like fun. Maybe I will try my hand at it again.

Adrian

2011-11-17T20:57:00.003-05:00

Sorry, pic of a pic. But look how much he's growing up! This is not from last year to this year. This is from April of this year and September!

Still on the car seat thing...

2011-11-16T20:29:00.010-05:00

The DME brought out a Britax Traveller to try. Charlie fits in it very nicely but I'm still iffy. I nixed the idea of the Recaro. It just sits up so high on it's base I know I'll have trouble getting her in and out of the car. The Traveller is nice, but I keep finding myself eyeballing the Roosevelt.

The Roosevelt will last her longer and has more features that would suit her. It has a 35 lb minimum weight on it, but I called the company and they said it has been tested with the 1 year old, 22 lb crash dummy and passed. They only put that minimum so people wouldn't put babies in this seat (they feel strongly that little ones should be rear-facing, and this is a forward-facing only seat). So hurray for a company that actually CARES about safety! The main dude there wrote a letter of exception for Charlie since she's plenty old enough to be forward-facing. He said he's never had a problem with insurance not paying with the letters he writes. We shall see.

I just need to find a model in town somewhere that I can try her in. I don't want to make a decision without actually trying her in all of the options.

Pics of the Traveller:

Not bad at all! I expected her to slump but she really didn't.

The pretty purple outfit she got for her birthday from Ava and her family:

Got our Christmas tree up!!!

And yup, there's the presents too. I like to get it all done early so I'm not scrambling the week before Christmas. Also, it's easier for me to budget if I take it in small bites.

Charlie loving her iPad time! I haven't gotten a good video of her playing with it yet, but you can see here from her smile how much she loves it!

Autonomic crap! Boo! It's getting worse and worse. I called her primary doctor today and will be calling her neuro tomorrow. Then her primary will call the neuro and discuss everything. She's storming several times per week, up from about once a month. So we're having to knock her out with Clonidine all the time. Here's what her face does at the beginning of a storm:

Ignore the red circle on her neck...that's just irritation from the scopolomine patch. But her cheek! It looks like someone backhanded her! And her temp shoots up. On one occasion to 105! And her heartrate soars to the 180's. And she acts like she can't get enough oxygen no matter what, even if her sats are fine.

I feel like she's never going to be right. :-(

I know this isn't something that's going to get better but it would be nice if we wouldn't have to just keep drugging her. But it seems that's really the only answer. Bah! I imagine what I'll hear from the doctors is to go up on her Klonipin. That would put her higher than she's ever been, even when these storms almost killed her back in 2009. Of course, she's bigger now, but still... I wanted to get her OFF some of these meds!

Ok I'm done pouting. Onto some good stuff...

Apparently I qualify for medicaid if I just make a little less money. So, easy choice for me. Cut some hours at work and get my teeth fixed. Yeah I'll have to watch my budget a little more closely, but it'll be worth it! My teeth are so bad I'm having difficulty eating. I've been going for soft stuff like...lots of bread. I've put on 3 lbs! Yeah it's not a lot, but enough to freak me out. I will NOT ever be fat again! So I'm going to get my teeth fixed. And I'm going to eat vegetables again. Yep. And lose these 3 lbs.

I'm super excited for Christmas. Adrian has a boatload of presents under the tree. He knows he has to donate some of his old toys though, to make room for new ones. He's gathered up two trash bags full of stuff and he hasn't even gotten to his room yet! He did the toy corner in the living room, the toy corner in my room, and all of Charlie's room. All with minimal help from me. The only thing I did was help him along in a decision when he was struggling. I'd ask him questions like "When was the last time you played with it?" and "Do you think you'll play with it in the next month?" Pretty good for a kid who's learned hoarding from his dad. I'll beat that behavior out of him if it's the last thing I do! He's gone from wanting to collect bits of trash, to willfully donating toys. Makes me one happy mama. :-)

It's always hard to find things Charlie can actually "play" with so I'm trying to focus less on that this year. She's getting her whole bedroom redone, of course. I got an 18' LED rope light to string around her room. And a jellyfish aquarium to use as a nightlight:

Adrian is getting a DS Lite with 4 games, some Lego sets, and I'm making him a Lego storage/play area. I got the idea from Family fun magazine, which it doesn't seem to want to let me link to. And some other little things, like the Lego Ideas book and some comic books.

The Lego storage thing is as much for me as it is for him. I tell people it looks like a Lego factory barfed in my house. LOL

I just cannot WAIT to post pics when her room is done! I have all these ideas about how to make it look more like a little girl's room and less "medical" looking. I'm going to make a pretty cover for her oxygen concentrator for when it's not being used. And I'm going to get a cabinet like this one, to stick all of her medical crap in. That way we can shut the doors and it will all just...disappear! For a little while anyway. I'm going to hang her white board with her list of meds and other stuff inside one door, and hang all of her important papers inside the other door. I'll cut holes in the back panel to feed all the cords through. Her pulse-ox, nebulizer, Vest system...will all be tucked away. I'm going to put a little hook on one side of her headboard for her feed bag to hang on. I'm going to get a little side table for her suction machine. It'll be great, just wait! Annnnd...it's almost 11 pm, I'd better go to bed!

Just a few pics...

2011-11-06T17:50:00.002-05:00

Ok first, look how big she is getting!!! It's hard to tell when she's all folded up in a chair, but laid out on the floor and stretched out you can see how long she is. Those are 5T pants!

And she has some stuff going on again...no idea what, but possibly autonomic. She did have an ear infection, but that wouldn't explain the really high fevers, freezing limbs, flushed face, high heart rate, etc. I was hoping to drop one of her doses of oxycodone, but I guess now is not the time to try! I really want to stop getting up in the middle of the night for meds though.

I put her in the car this morning and she's even closer to outgrowing her car seat! Eek! Will this child ever slow down!?

And a pic of the headboard and picture frames/memo boards. The comforter came but we are still waiting on the other things. And the bed of course. Hurry up Grandma, we need that bed!!! LOL I can't wait to redo her room!

Just playing around...

2011-11-04T16:20:00.003-04:00

I downloaded a free pic collage app and had some fun playing with it.

Charlie...how can anyone not love this child!?

Brother and sister:

Adrian...he's changed so much!

Yeah I know the pictures aren't centered real well on that last one. Scrapbooking in any form is not my strong point. LOL

So Charlie is outgrowing her crib and I don't like the options we have for medical beds. I was going to build her a really cool medical bed, but goodness knows it'll be a while before I get around to it. For the time being, my mom is giving us her old double bed. It'll work for a while. Who knows, it might be the last bed she needs. Right now, if we laid her in the middle of it, she wouldn't wiggle enough to fall out, not even close. In the future that may change and we'll have to reconsider something with sides. But for now it works. I'm getting SUPER excited about redoing her whole room! My mom got us a headboard and 2 picture frames for $50. They are super cute...white with squares of purple and pink and the whole butterfly thing going on. I need to get a pic, but I haven't even fully taken it out of the packaging yet. I was browsing walmart.com for bedding and came across this (which also comes in a double size):

It's absolutely perfect so I got everything but the rug. It came to $110. So for $160 total she's getting a whole new big-girl room! Very exciting.

We just got approval for the car seat. I'm still sorting out which one to get her. I had picked the Britax Traveller, but I was told we could get a non-SN one, so I'm a little hung up on the Recaro Proride. I'd really like to try her in both but I don't know if that is going to happen. The DME guy doesn't seem to think it will (they don't keep stuff like that IN the store, they just order it specially).

The Recaro reclines forward-facing and would be more supportive on the sides. The limits are much lower than the Traveller, but I intend to transport Charlie in her chair eventually. I'm not going to be lifting her in and out of her car seat when she's 60 lbs, ya know? I WILL make a decision eventually!

Guess what!?

2011-10-29T09:45:00.009-04:00

We got an iPad! I was lucky enough to come across a very gently used one because I certainly don't have $600+ to spend on something like that. But it's so cool, it would have been worth every penny (after saving for months and months which I had planned on eventually doing). So yeah, I got very lucky.

I'm able to use it for tons of stuff. I surf the web, play games, organize homeschool stuff (lesson plans, attendance, etc), and store pictures. Lots of fun. Adrian has a ton of games already (mostly free, although I did splurge on angry birds and a few educational apps). He's using iDiary for his writing now. I find it helps that he doesn't have to physically write everything. He struggles a lot with handwriting and it can be overwhelming. We do handwriting practice completely separate. I think it's more important to actually figure out how to get his thoughts on paper...handwriting will just naturally get better as he gets older. He has math apps, and history and geography apps. He's thrilled to be able to do some of his school work on it.

Charlie love it as well. She's always enjoyed Grandma's iPod touch, but the iPad is big enough SHE can touch it and play with it! And it's so sensitive that even the slightest touch makes it do something. See, all of her toys at home require a certain amount of pressure to make it do something. You have to actually PUSH the piano keys down to get noise out of it. The iPad she just has to barely brush the screen and she's instantly rewarded. So I'm assuming this is why she doesn't care for most of her toys but smiles and squeals as soon as I pull out the iPad. And protests when I say it's time for bed and put it away. The first night she got to play with it, she "yelled" at me for 45 minutes after I put it away before she finally let her meds get the best of her. Best toy EVER!

I highly recommend it for kids with very little control over their hands. There's so much they can do! Play instruments, watch animated storybooks, doodle, listen to animal noises, and watch light shows. That's just what she can do HERSELF. With me helping her, we can work on shapes, colors, letters and numbers. We started putting letters together to make words. I don't know how much she retrains, but she's having fun, so we may as well, right?

I've heard it can improve vision in kids with Cortical Vision Impairment, which is what Charlie has. I've talked to one person who said her daughter has shown improvement already.

I haven't gotten video of Charlie playing with it yet, but I will soon. A few people have requested a video and I know everyone is excited to see her be able to do things she wouldn't otherwise be able to do.

Here is Adrian playing "Smelly Cat":

Family Pic!:

One simple little toy made Adrian's week:

Our new way to work on spelling....move all the letters on post-it notes from one window to the other to make all 10 spelling words. Any letters left behind? You spelled something wrong! Thank goodness for Family Fun magazine.

Charlie in her new pjs that my sister and dad sent for her birthday. My sister called me from the store and said "Are you sure she needs 5T...they look huge!" Yes, she really does. She's really that big. LOL

Adrian had some appointments this past week. He had a speech evaluation and he qualifies for services. Amazingly, his stuttering almost completely disappeared about a week before the evaluation. I know he may start up again and it's not a huge deal, but for now, this is big improvement. So the therapy will mainly be for improving on his sounds. He's only a little behind so it's not too bad. I'm hoping speech therapy will be short-lived.

His other appointment was with neurology to discuss some of his odd behaviors. He has a tic disorder, but it's not bad enough to be labeled Tourette's. We're not even considering medicating just yet. It's nice to have our foot in the door though, in case he gets worse. The doctor also thinks he has an anxiety disorder and possibly ADHD. She's referring him to psychology for the anxiety and our regular pedi for the ADHD. Again, we are not considering medicating for any of it just yet. We're just trying to figure everything out. The ADHD I was kind of expecting. I didn't really notice much of a problem until we got to our more academic based curriculum this year. He can't focus to save his life. The K teacher at the daycare is about to pull her hair out. I'm struggling to understand...everything. He's so smart and he learns so easily....so why can't he write 3 sentences? Why does it take him an hour to settle down enough to do 1 math problem?

It would be nice to have some help. Some suggestions on how to manage this. On the other hand, I'm afraid of the stigma. Nearly everyone I know seems to think ADHD is a made up disorder that's really just a discipline problem. People who have kids with ADHD never say this. People who were blessed with "easy" kids always seem to think their kids' angelic behavior is somehow their doing. When really, probably 95% of how a kid acts is just the personality they were born with. I've seen the best parents have kids rage out of control and crappy parents that can't be bothered to even spend time with their kids end up with angels. I was one of those kids that was angelic. Rarely got in trouble. I didn't think up crazy schemes to annoy my parents. I came straight from school and did my homework without needing to be told. Did my mom and dad shape me to be like that? I don't think so. They were good parents, but I'm sure half the time they didn't have a clue what they were doing. Most parents don't. The ones that think they do usually have less of a clue than anyone else. My little sister was a HECK of a lot more challenging than I was and we were raised in the same house by the same parents. Did they discipline me better than her? I've been told she was challenging from day 1. Kind of like Adrian. Did I fail him somewhere or did he just come out screaming because that's how he is? He was a challenging baby, a challenging toddler, a challenging 1st grader. I expect he'll be challenging when he hits puberty, and then his teens as well.

What I find funny is that everyone always praises my parenting. I'm constantly told "I could never do what you do". I'm told that I go "above and beyond" for my kids. But if I mention ADHD, it's like a light switch is flipped. I just don't beat his ass hard enough.

Yup, THAT'S the problem. *sigh*

I'll get through this, just like I get through everything else. It would be nice to have support though. When Charlie was very young, I knew what her prognosis was before any doctor actually came out and said it. And because no doctor had said it, it wasn't real to anyone else but me. If I brought it up to anyone it was "she just needs time to heal...you'll see!" and "babies are resilient, she'll be fine". "If you get the right therapy, she may be able to walk one day!" That one still burns me up. For months I had to live with this...my own little secret. I couldn't bring it up or I was poo-pooed and told I was being negative. I had to just let it stew in my head until everyone else came to terms with it as well. Obviously what Adrian is dealing with is not *anything* close to that, but it's still hard. We all just want what's best for our kids and I hate that I can't just sit him down and teach him and go about our day. It's never that simple. At least once a week he ends up in tears over some simple lesson. He's not being lazy. It's just that we both get so frustrated we don't know what to do. He can't focus. I can't understand why he can't focus. He doesn't understand why I can't understand....it goes on and on.

He's a GOOD kid. He's not aggressive or mean or a bully. He doesn't do things out of spite. He doesn't makes huge messes just because he feels like it. He doesn't run into traffic or run away from me in the store. He doesn't tantrum. He wears his helmet even though no one else in our neighborhood does and takes safety as seriously as I do. He's the world's best big brother in a situation a lot of kids wouldn't handle it with the finesse he does. 95% of the time he's an angel. So please, before anyone lectures me on how I discipline, take a look at ALL of him. He's a GOOD kid. He can't focus for shit, but he's a GOOD kid.

Happy Birthday Charlie!

2011-10-13T13:44:00.006-04:00

Wow I'm running behind! Charlie's birthday was over a week ago! We had a little party for her, nothing big. Mostly just the women sitting around talking while the kids ran around wild. LOL I completely forgot to take pictures. Oops. But here's a cute one afterward. She loves it when I tie balloons to her wrists.

This is what Adrian made for her. He discovered Perler beads and this set of "big beads" was on clearance. Cute, huh?

This is what he did with the leftover Dora beads:

That's a leprechaun, a clover and a pot of gold. He's way more creative than I was as a kid. I used to just make patterns on the heart and star boards.

There's not much else going on. Her patches are still helping with her secretions. We're going to go get her tube changed today....she looks like she needs a size up. We've cut her feeds again and she's still growing like a weed. Gotta go change her ticker at the bottom...countdown to her 5th birthday!

100% better!

2011-09-30T15:02:00.002-04:00

Here's Charlie snoozing in her car seat OFF oxygen! She's doing better now than she was before she came down with that last pneumonia, honestly. I think she just keeps growing pseudomonas. They always treat that along with the pneumonia. I'm going to ask them about doing a low dose of maintenance tobra. Because I HATE putting this child on oxygen!

Ok so more great news. We waited until after she got better to try the scopolomine patches. I didn't want any funky side effects WHILE she was sick, ya know? Well, she's doing *wonderfully* on them! We're cutting the patches in half so she's not even needing a whole dose. We change them every 72 hours and other than some mild skin irritation and a dry tongue (which we've started swabbing), she's had no side effects. Her secretions are SO much better! She's definitely needing suctioned less, and less is coming out when we do. She's breathing easier. I never noticed how hard she worked to breathe before....it was always just her "norm". But she's breathing calmer now AND her heartrate dropped about 20 bpm across the board. That happened after her first ablation...but I didn't expect it to happen again. She stays around 100 regularly and maybe 110-120 when she's excited. 60-85 when sleeping. She was 109 the other day while she was being jiggled by her Vest! A few weeks ago with the vest she'd be 130-140!

I worked with her for the first time on eye gaze last night. I didn't even try until close to bedtime so she was already tired, but she still did great! You can tell she's working hard because her eyes do this funky twitching thing. She can't seem to do one fluid movement from one object to the next. It almost looks like her eyes are "stuttering" on their way over. No other way to describe it. But she does understand the concept. She knows what we want her to do. I think with a little practice she'll be using eye gaze to actually communicate in no time!

First pneumonia of the season!

2011-09-19T16:25:00.002-04:00

So 2 weeks ago Adrian had a nasty cold. He stayed with his dad for an extra couple of days and then came to my house. Even with the extra time away I managed to catch it. I was so relieved that I didn't have to call of work even though I felt like crap. I wasn't *that* sick! I was JUST past it and on Wednesday morning Charlie's pulse-ox woke me up at 4:45. Her pulse was over 200, she was burning up, and had sprayed her crib with green mucous. She was FINE when I put her to be the night before! So I plunged some tylenol in her tube and suctioned her out really well and got in the shower. I had reset her monitor to alarm at 210 for her heartrate so it wouldn't constantly go off while I was in the shower. No luck. She went even higher. At that point the tylenol *should* have been kicking in but her fever was still almost 103.

And then her sats started to drop even with her concentrator cranked to 3 liters. All the classic signs of pneumonia. Oy.

So I started packing her up to head to the ER. I called off work (oh, yay...so much for avoiding that!) and then her nurse go there and we got the show on the road. When we got to the ER, Charlie decided to start doing better (she ALWAYS does!) and her chest x-ray came back looking hazy, but no clear pneumonia. At that point I'm thinking, "Man I called off for nothing!" But they kept her overnight anyway. I went back to work the next day, then hauled Adrian up to the hospital. Apparently her chest x-ray that day showed a clear pneumonia. The doctor said it probably was already pneumonia on Wednesday it just didn't show up yet. So we didn't waste time bringing her in. I'm sure catching it so super early saved us all a lot of trouble. By Friday she was already 100 times better and I took her home Saturday.

Getting her out of the hospital on Saturday was no easy feat! The doctor kept coming up with reasons for her to stay! "Well, we'd like to see her on only 1L of oxygen before sending her home." Um, why!? She's sometimes on more than that when she's *healthy*! "Well she's doing this funny thing with her mouth that looks like seizures". Yeah it's called MOVING HER MOUTH. It's normal and she does it all the time. Sheesh. "Well she got worse since yesterday". Yeah, that's because I went home to sleep and apparently ya'll don't know how to properly suction! They didn't like it when I told them that. But really, it's ridiculous that the RN's can't do it right. Finally I said, "You know what, Dr. Shell is her regular pulm doc and if he were here, he'd send her home." I went and got lunch, and when I got back to the floor I guess they'd called Dr. Shell at home and he said to send us home. LMAO

A lady from housekeeping left a little towel kitty on the table:

Feeling pretty icky on day 2:

Feeling a little better with the toy bear Adrian picked out for her (he was supposed to be picking a toy for himself!):

Feeling LOTS better!:

And now we're home and she's on a 2 week course of antibiotics. Bleh. She's doing great though! It always amazes me how well she manages these illnesses!

All about Adrian!

2011-09-11T14:38:00.003-04:00

I have no new pics of Charlie to share and so much to say about Adrian right now I figured I'd do a post just for him!

First of all, we got his new booster. He loves his cowmoo....er...dalmatian print cover! We've had to tinker with the fit a little bit, but it's starting to grow on me. The little guy just has SUCH narrow shoulders we were having issues keeping the belt where it should be. I'm hoping he'll broaden out soon. His dad is really broad-shouldered so I'd expect him to be...maybe.

I hope this is the last seat EVER I will have to buy for him. It adjusts super tall, higher than any other booster on the market. *I* fit in it! Well, I would, if I lost 10 lbs (weight limit is 120!). But height-wise I fit. So Adrian will definitely fit until he's totally ready for a seat belt. We'll probably never need to use it as a backless unless he's 10 and still needs the booster and is horribly embarrassed to be seen in it. Then I will let him switch to the backless since it's less noticeable. Remember, the law may say 8 years or 80 lbs, but most kids aren't ready to ditch the booster until closer to 10-12 years.

Homeschooling is going quite well. Our biggest issue is Adrian is expected to write so much more now. He balked at first but he's adjusting I think. He's struggling a lot with his handwriting. I don't really know what is age appropriate. I don't know if it's normal for him to still struggle this much. But I'm making him work on it at his dad's on the weekends. I'm hoping to get past this hurdle very soon, because it's the only thing holding him back from just flying through his lessons. He takes in everything so quickly and easily. Like, with Language Arts, all this new stuff hasn't even phased him. 2 weeks into school and he's already breaking sentences down into nouns, pronouns and verbs. We're due to start adjectives this week. But ask him to WRITE a sentence and on come the tears. He really likes the pages that he only has to circle and underline things. LOL I'm starting to wish I'd made him work on it more last year but who knows if that would have even helped, you know? They say kids do things with they are ready!

I finally have his homeschool area set up just how I want it...I think. I'll probably change my mind again in a month. Anyway, here it is:

Here he is doing his first art lesson (thanks to the tabletop easel from my mom!):

And the finished product:

He says it is a cat, but he didn't know how to paint the body so he drew a line instead and now it's a cat balloon! And those are his initials at the top!

Time-wise things are a little difficult. I send a little work for him to do while he's in the K room at the daycare, but...he's 6. He doesn't have a whole lot of self-discipline. So while he sometimes works on stuff, most of the time he just gets wrapped up in being a kid. I think it will get easier next month when the K kids begin "formal" schooling (right now they are calling it an adjustment period and just doing whatever). He'll be bored to death when they are working on memorizing sight words and he'll be forced to get his own books out. So when we get home he gets free time while I eat lunch (he eats with the daycare kids). Then we get to work and honestly it just depends on his mood how long we take getting everything done. Sometimes we have to put it away, take a 30 minute nap, and get it back out in the evening after he's had more free time.

But it's doable! That's the important thing. And he's not miserable or overworked. I try to make sure he gets his fair share of "just being a kid" time. And I'm making it a point to get in 30 minutes of reading before bedtime because I realize now just how important that time with me is. I guess I never noticed before. Reading before bed was always so hit or miss. Sometimes we'd do it and sometimes not. He needs it though. I can tell that now. We are 2/3 of the way through the 4th Harry Potter book. I hope to be through the whole series by the end of the school year, including the Tales of Beetle the Bard. What series to read next...hmmm...

According to the district we should be logging 900 hours this school year. That's 5 hours a day if we do the typical school year of 180 days! At first I thought..."There's no way we can do that much!" and then I thought, "It's not fair, public schooled kids aren't learning 5 hours a day!" Then I realized we ARE doing 5 or more hours a day. It just depends on what you consider "learning". Is it sitting down doing "formal" lessons out of a workbook? Well sure. But not always. I count our read-aloud time, crafts, physical activity, educational videos, etc. It adds up. I plan to get a learn Spanish audio thing to listen to in the car on the 20 minute drive to the daycare so we can tack another 20 minutes onto our day. So we may only sit down for lessons 2-2 1/2 hours a day, but he's learning for at least 5. And really it's what progress he's making that counts. I know he's getting more than he would be getting in public school. For one, I'm able to challenge him where he needs it, like in math! And spend extra time working with him on things like handwriting!

And let me tell you one thing...I'm almost positive he'd be having difficulty in school. I swear this kid has ADHD. Or it could be completely and totally normal behavior for a 6 year old. He's bouncing off the walls and has to be reminded constantly what he's supposed to be focused on. If I'm not sitting right beside him the whole time, he'll start doodling, or picking a scab, or staring off into space, or making up his own version of how his worksheet is supposed to be done, or giving all his numbers monster faces, or...you get the picture. Oy. The last thing I need is someone telling me there's something "wrong" with him. I think he may need more help focusing than some other kids but I can help him with that.

So I DO have little bit about Charlie. I've worked up a little preschool curriculum for her. I just have to put it in motion now. I'm still gathering supplies and making sensory bottles. Her IEP meeting is later this month, where I will officially withdraw her. Then I have to get her nurses on board with everything (it shouldn't be too hard!) because goodness knows I can't homeschool 2 vastly different children all by myself AND work 30 hours a week! It should be fun for her though. I have all sorts of cool stuff planned, from arts and crafts to sensory stuff. And we will be working a lot on eye gaze communication! I just DARE them to tell me at the IEP meeting that I can't do for her what they can. Last year was such a joke. But I've already gotten the vibe from them that they think homeschooling is a joke, so we'll see.

Then I'd like to get her back in therapy, but there's no huge rush. She's doing great and therapy for her is more just about keeping her limber and comfortable rather than having goals about reaching milestones.

I'll have to get on the ball about taking more pics. Charlie is looking just darling in her fall outfits with her short hair! She's getting more cute outfits for her birthday too. She's going to be FOUR!!! Can you believe it!?

School, and car seats, and Christmas, Oh My!

2011-08-28T09:47:00.003-04:00

Just a few little things here. Charlie's lighter-weight medical stroller was approved! Yay! I don't know when exactly we'll be getting it, but as least I know one thing went through. I'm still waiting to hear on the others. Because of the way the tethers are set up in my car (at the very back of the cargo area) I have to unhook them every time I need to get her stroller out. So I figured I'd eliminate the tethers for now. I turned Charlie rear-facing and put Adrian's harnessed car seat back in grandma's car. Right now he's in a backless, which I'm not thrilled about, but he has a cowmoo britax parkway coming in the mail this week! We are both SO excited! It's the first car seat I've bought in over 2 years. Ya'll should be so proud of me. I used to have a certain problem with regards to car seat buying. *ahem*

I'm finally getting a computer set up at home. Which means hopefully I can update this blog more often. I'm still working on internet and a desk, but at least the computer is up and running! Here's our make-shift desk in the meantime:

Oh look there's another car seat! LOL

Adrian is picking up on using the computer so quickly it's mind-boggling. I've always been around computers. We had them in school even when I was in the lower grades. My mom always had at least a word processor lying around. And she got us a really decent for the times computer when I was 11. Still, with all of that, I don't remember learning to use "shift" to capitalize until I was like 12. I would press the caps lock in, type the letter, the press it again. I only have to show Adrian something ONCE on the computer and he just "gets it". A friend of mine said "Well that's the world he lives in now." I'd like to think my kid is just smart though. LOL I can see already that he's going to prefer typing to actually writing things out. I'm going to have to figure out how to balance it out so he's getting good practice with both. I don't want him to NOT learn to write, but really, he's going to type most things in his life when he's older. It's just the world we live in. ;-)

Our new car seat set-up photo shoot!

I *think* Charlie's massive growth spurt is coming to an end. She's 32 lbs and 38" now. Wearing 6x shirts and 5T pants. As my little sister said about this pic "She's giving that caterpillar a run for it's money!"

I'm working on setting up a homeschool curriculum for Charlie as well. I was just going to take it day by day but I think having a handle on things will benefit her more. Having goals, structure, actual "school" time. Just like Adrian. I will post more later once I get it all figured out. I think it's going to be hard work but really fun! Adrian's schooling is quite easy. I can just order books for him, teach him the way I was taught, and it's all smooth sailing. Charlie requires more thinking outside the box. More tools. More....everything. I'm going to do my very best though. I'm 100% sure I can provide her a better education than the local schools here can.

It's that time of year that I should be making Christmas gifts but I just haven't gotten there yet. No great ideas have come to me. I have no desire yet to get crafting. I don't know where I'm going to find the TIME! If anyone has ideas....throw them at me. I'm highly unmotivated this year. I even thought about NOT making anything and just buying all their gifts from the store *gasp*! It wouldn't be the end of the world but it's just not me. I make things. It's part of who I am. I just need a little nudge. :-)

End of summer :-(

2011-08-15T14:58:00.003-04:00

I'm so sad that summer is coming to an end. I know most people get sick of the heat and can't wait for fall, but not me! I LOVE summer! I am enjoying the slightly cooler we've been having lately though. Charlie can go for more walks and not overheat. And Adrian's laundry doesn't stink up the bathroom anymore from his sweat. :-/ I'm just dreading the inevitable snow and ice.

I went back and forth all summer about sending Adrian to school. I'm feeling pressure to put him in school and I'm also concerned about making it work for another year. Seeing as how I AM a working mom, I have to be extra careful with time management in order to get in all the "school" we need to. I wish I could just spend entire days baking, or doing science experiments, knowing we'll "catch up" on math and spelling the next day. But that won't happen. So after agonizing for over a month I'm 99% sure I'll be homeschooling again, knowing I'm going to have to be extremely disciplined to make it work. I've picked out some curriculum books and I'm just waiting on my next paycheck to buy them. I printed out a leveled reading list and carefully sorted it into a folder to take to the library with us. Even though we never took a break from schoolwork for the summer, I'm eager to get into our 1st grade routine.

I bought Adrian a loft bed and got it all set up. And actually got him to SLEEP in it! Imagine that!

Charlie out strolling on a nicer day:

Check out this autonomic flush :-o

Not so bad on this side:

I'm still LOVING Charlie's haircut! Best decision I ever made! It doesn't always want to do what it's "supposed" to, but then again it never did. At least now she doesn't have dried spit in her hair all the time. And she's cute no matter what. Even if her hair sticks up.

Haircut!

2011-08-03T13:52:00.002-04:00

So Charlie's hair has kind of been a big bother for a long time now. It get ratty and tangled, covered in spit, and she CHEWS on it if it gets near her mouth. Pulling it back helps some, but her hair is so fine it eventually just falls out of the elastic band. So I decided to go short. I mean SHORT, short. I took her last night to a children's salon in the next town over. I told the stylist what I wanted and she started cutting before I had a chance to second-guess myself!

We love it so far! I think she looks adorable and still plenty girly.

Her nurse gave her a mohawk today:

Sorry!

2011-07-30T15:59:00.000-04:00

I didn't get a chance to update. We're home from the hospital after 8 days inpatient! She started having low blood pressure problems her 3rd day there, so that delayed things even more. They are now stating that her blood pressure was low because of all her meds, but I don't buy it. Why would she suddenly have problems after taking all the same meds for like 2 years? Anyway, I refused to leave without a blood pressure cuff so I can check her at home. She spent most of the 8 days just passed out in bed. She'd wake up and look around, but then fall back asleep. She didn't really even smile or vocalize. She definitely wasn't kicking or waving her arms. We never really did find anything "wrong" with her. We did tinker with her meds some and she came off the oxygen yesterday, so maybe we're onto something. But now she's not sleeping at night because of the same med tinkering. *sigh* We just can't win.

Looking like hell on our way out of the hospital:

A little bit back to her old self yesterday:

Well...

2011-07-21T15:34:00.002-04:00

"A rough few weeks" turned into a "hell of a month". We're inpatient with Charlie and will probably be here the weekend. After her ear infection and round of antibiotics, then sleeping for 4 days staright, she seemed fine for like 2 days then started desatting all the time! WTF!? So she's been on oxygen for a week now and yesterday we couldn't keep her up even on the high-flow mask so I brought her in. She's doing better now, on just the cannula. I don't think she's sick. All her labs keep coming back fine. I think it's autonomic. She popped up a bunch of weird red splotches all over. Her doc is going to look at tinkering with her meds to see if that helps. I will update when I know more!

A rough few weeks...

2011-07-11T15:10:00.003-04:00

So after the ablation, things seemed to go fine for Charlie but after about a week she started having a lot of pain and she was irritated all. the. time. She was acting a little "off" before the procedure so I just assumed it was gut pain or something and it had just escalated. They prescribed antibiotics after the ablation (it's now routine...I guess they've had issues with kids getting infections). So I did probiotic juice through her tube to try and counter the antibiotics. Well, not only did it NOT work (she ended up with yeast problems) she also got a horrible double ear infection and a possible UTI. The only reason we didn't test for the UTI is because we were already going to do another round of antibiotics. But she was passing cloudy urine and screaming while doing so. Anyway....we *finally* got all of that under control and Miss Charlie slept for FOUR DAYS STRAIGHT. Talk about worrying a mama. :-/ But she's awake now and mostly back to normal.

And I called her doctor today about doing a referral to an ENT because I think we need to consider tubes for her ears at this point.

Oh and the whole time she was sleeping she must have been conserving calories because I swear she gained like 2 lbs in that time. She got chubby all the sudden and it hurts my back to pick her up. LOL

For the first couple of weeks I wasn't sure the ablation did much for her. I thought I noticed a small decrease in secretions but it was hard to tell. Well, the last couple of days it was more noticeable. I wonder if they often have kids not get results until 3 weeks later? Anyway, another sign it's working....again with the PEE. She's losing less out of her mouth and is wetting diapers like 7-8 times a day vs 3-4 before. And sometimes leaking out because there is so much. I didn't consider 3-4 wet diapers a problem before. They weren't too stinky or anything. But it's obvious she's supposed to be going more than 3-4 times a day.

Not a baby!

2011-07-02T20:12:00.004-04:00

So this is a rant that has been brewing for quite some time. Please bear with me...I HAVE to get this out. According to Charlie's ticker at the bottom of the page, she is 3 years, 8 months, 3 weeks, and 6 days old. She is nearly FOUR years old.

She is not a baby.

Period.

End of story.

When you walk up to my 30 lb, 37" child and say "Oh look at the cute baby!", you are being disrespectful. She is not a baby! She is a preschooler. If she were able to attend the daycare where I work, she would soon be moving up to the Pre-K room. That's right, Pre-Kindergarten. Where the kids learn pre-reading skills and sit quietly during circle time and all use the toilet without any adult help. These kids are not babies.

I know it's difficult for people to re-train their minds about what non-verbal, non-ambulatory, rides in a stroller, and wears a diaper means. But really? How hard is it? She is HUGE. When I carry her on my shoulder, her feet hit my knees. So, ok I'm kind of short, but she's not small anymore. Her recent growth spurt made her jump the percentiles in a big way.

I probably wouldn't care so much about this except Charlie's physical abilities and cognitive abilities don't match up. Physically...she's less capable than a newborn. But cognitively, she's likely "all there". There's no real way to test her, but I see her every day and she's alert, aware, answers questions in her own way, laughs at things that are funny, and follows simple commands. She's shown that she knows her colors and is probably starting to pick up on shapes, letters, and numbers as well.

She understands what you say to her.

So when you demean her by calling her a "baby", it probably hurts her feelings.

And don't demean me by backtracking when I call you out on it. Just say you are sorry and stop. Don't say, "Oh well, she'll always be YOUR baby." Yes, yes she will. But this doesn't make it ok for YOU to call her a baby. I'll admit to calling her "my baby" in an endearing way, but that's my right as her mom. I still do it with my 6 year old. But if someone walked up to him and called him a baby because.....he still needed floaties in the pool, they'd get an earful. Because it's a term used to make the child feel smaller than they are. Adrian still uses floaties, Charlie still uses a stroller. Neither of these things make them "babies".

This is what a baby looks like:

This is what a baby looks like:

This is an almost 4 year old:

I'm assuming most people reading my blog won't make this mistake if they encounter SN kids while out and about, because if you have any interest in my blog you are probably already sensitive to how a mom of a SN kid feels about stuff. But....maybe spread the word. Kids in wheelchairs are not babies. It should be common sense, but it's not. Or maybe it's because, as they say, common sense is not so common.

Oh and I'd like to think it's just because she's still kind of young, but according to some other parents of older SN kids...this is an ongoing problem. When adults are calling 10 year old 70 lb children "babies" it's just flat out ignorance.

Update...

2011-06-26T10:02:00.006-04:00

5 days post-op:

8 days post-op:

The swelling and bruises are mostly gone, but she does have a small knot where the gland was. I don't remember her having that last time, but then again, last time I was so afraid to touch anywhere in that area I might have just not noticed!

Her secretions are definitely less. We still have to suction a lot, but we are getting less out. The problem Charlie has, it doesn't matter how little secretions she has, it all just falls back in her airway. So she's *always* going to struggle, unless we dry her out completely, which is not a good idea. But with LESS secretions she breathes better and has higher O2 sats. I've always hoped to get rid of this damn suction machine but I don't think that's realistic for us. I'm probably going to invest in a hand-powered suction unit so we don't have to drag the big one everywhere. It's also quieter so it'll be nice for restaurants, movies, ect.

Just a pic of Charlie hamming it up:

That's her forced smile for the camera. Until recently I've had to "make" her smile for pictures. Talk to her funny, jiggle her feet, ect. But on a good day now, all you have to do is say "Smile for the camera Charlie!" and she does. But it's kind of goofy looking. LOL

I had a discussion one time with a doctor who was trying to get me to attend the CP clinic at Children's hospital. I flipped through the brochures and paperwork and decided it was geared more towards kids with milder CP. The information was all about getting kids reaching major milestones, like walking, feeding therapy, behavioral issues, ect. It was all therapy, therapy, therapy! Now if you've been reading my blog any length of time you'll know that none of that benefits Charlie. We DO therapy, but our goals are not to get her to sit or walk, or talk, or eat. She has VERY severe CP. These things are not practical goals. Practical goals for Charlie are getting her to communicate yes/no, using her hand to hit a switch, ect. Not to be a downer, but this child is NOT going to be independent, ever. She won't ever eat...and behavioral issues? Are you kidding me? This program obviously did not apply to her.

So when I voiced these concerns the doctor tried to talk me into it. I told her, "Just look at these pictures...all of these kids are high-functioning. They obviously have a certain type of patient in mind for this program". She told me "Well they probably just needed to be able to photograph kids who can smile on command". That pissed me off. So they took the kids with mild CP and used them to advertise their program because they can smile pretty for the camera? That's bullshit.

And I know that for a fact now because we went and did it. It was a complete waste of time and the therapists were talking about all the stuff we "need" to get her doing (sitting, ect). I said, "Hold it right there....Charlie is PERFECT the way she is. She doesn't NEED to do anything but be a happy kid. We've TRIED therapy (LOTS of therapy) with almost no success. She does things when she's damn well ready to, therapy or no therapy, and we celebrate every little success." They backtracked and said "You did therapy?" Yup, sure did...4 sessions a week for 18 months. They ASSumed she was so "behind" because we neglected her therapy. When corrected, they said "Well maybe you just need the right therapists". Aaaaannnnnd....we're done.

I was right and we didn't go back. They want kids they can see consistent improvement from. They don't want kids who are so severe that years of therapy do squat.

But it doesn't matter. My kid can smile pretty for the camera. :-D

Update on salivary gland ablation...

2011-06-18T15:15:00.007-04:00

So Charlie's salivary gland ablation went very well. I was packed and ready for a weekend stay at the hospital (remember last time we were in the PICU for 4 days), but we went home later that night! She has quite a bit of swelling but it wasn't nearly as bad as last time. Her breathing isn't compromised at all and she's not in as much pain (if any at all). We can't really tell how much this round is going to help her. I'll update again once the swelling has gone down. So they did 5 of her 6 glands the first time (1 big gland and 4 little ones) and this time they did just the second big gland. She'll still have saliva production because some new tissue regrows around the scarred tissue.

Before the procedure, hamming it up for the camera:

My little vampire hybrid child:

Post-op (about 11:00am):

A little bruise peeking out from under the band-aid:

Not thrilled but not in a lot of pain I don't think. She cried a little when she woke up but as soon as I got in the room she calmed down. I think she was just scared. Last time she was freaking out and as soon as I'd get her calmed down she'd cough and hurt herself all over again. She didn't even act like coughing bothered her this time.

Oh wait, there's a smile! She was back to her normal self by 1:30pm.

Snoozin' after her pain meds. We had difficulty getting appropriate meds AGAIN, even though I discussed this with them beforehand and let them know that it is UNACCEPTABLE to not have access to pain meds immediately following a painful procedure. Children's is seriously lacking in this department. She didn't even get her regular meds at noon like she should have, which include oxycodone. They FINALLY got her some pain meds at 4pm. And then she was able to relax. The only reason I wasn't hopping up and down and throwing a fit is because she really didn't seem to be in much pain. I'm sure she was uncomfortable though. I'm definitely going to be following up on this complaint.

More bruising (6:15pm):

Leaving the hospital (7:00pm):

And even more bruising the next day:

The swelling is less but the bruising is a LOT more. It looks awful but doesn't seem to bother her. This was definitely a lot easier than the first time.

Salivary gland ablation!

2011-05-31T19:33:00.002-04:00

We are going back for round 2! The last time we did the ablation, we did 5 of the 6 glands....1 of the big ones and all 4 little ones. He normally won't do that many at once. He usually does one side at a time (1 big gland and 2 little ones), but since Charlie is a little more talented in secretion production, he did more. And he normally doesn't go back and do the last one, but again, my kid is extraordinarily talented. So we're doing it again. I'm hoping it's not as bad this time. Last time she was in the PICU for 4 days because she was so swollen her airway got blocked off. I scheduled it for a Friday though, just in case. If she does end up in the PICU again, I don't have to worry about work over the weekend. It's scheduled for June 17. Wish us luck!

Seating clinic

2011-05-28T20:03:00.003-04:00

We went to the seating clinic this past Thursday and it went very well. We didn't get the horrible doctor we had last time so I didn't have to deal with any arrogant, condescending attitudes.

We picked out the Britax Traveller Plus car seat:

I looked at like 10 different special needs car seats trying to figure out what would work best. And to be perfectly honest, being the car seat nerd that I am, I didn't want what everyone else has. I wanted something cool, and different. But lo and behold, the one that looks like it'll fit Charlie's needs best is the one everyone else has. There's probably a reason for that. It's probably great. LOL

We picked out the Axiom push chair:

We needed something that would fold smaller because I cannot afford a van right now, with the way gas prices are. I'm going to get a small car and then get a van in a couple of years, and waiver will pay to have it adapted. Then I can use the van JUST for driving Charlie around and the car for everything else. But until Charlie is about 6 years old, we have to expect to use a car seat and transfer her to a stroller that folds and fits in the trunk. The wheels come off this stroller so it folds even smaller. It has a really tall back, 28" I think.

And we asked for this Omni toilet chair:

I'm sure some people think I'm crazy to try to potty-train a child with disabilities this severe. Let me tell you, I just might be. But that's not going to stop me from trying. And I'm not going to call it "potty-training". She's always going to need complete assistance and I doubt she'll ever be totally diaper free, but even if she just gets her morning pee in the toilet, that's one less diaper she uses and that much less pee sitting against her skin. I think she deserves a shot at it. She's staying dry overnight and she refuses to poop in public. I'm sure she can tell when she's wet, especially when she's in a cloth diaper. She has all the readiness signs except ya know, being able pull her pants down, actually sit on the potty, and verbally express her needs. Ah, well I can help her with all of that.

The medical bed is the only thing I'm hung up on. They'll write for it. But they've never heard of any "good" beds being covered. They said medicaid, waiver AND BCMH only ever pay for the kind with two metal rails that pop up. So, no thanks. I want Charlie to have better protection than that, like rails on ALL 4 sides. And something smaller than 10" slots she can fall through. So I'm going to design my own and have it built. It shouldn't cost too much and I'm sure it'll be worth the effort. I'm thinking something loft-style, only about waist high for the mattress, higher sides, and one side that swings down and is held up in place by slide locks. Pretty simple. We did ask for a wedge to go under her mattress. It is tempting to just put her in a regular bed, but she has her nights (and days) when she wiggles a LOT. Like so:

So she definitely needs rails.

Well, look at me go!

2011-05-23T18:35:00.002-04:00

It's actually not 2 months since my last blog post! Whoo!

Not a whole lot to update but plenty of pics and random stuff to share.

Charlie took over Adrian's little piano...he keeps insisting it's his, but she plays with it far more than he EVER did. And she's pretty good about hitting the buttons and keys too. She even contorts her arm to get to them:

So that pretty well freaked me out. I'm sure it's normal for HER though. Heh.

We ordered bigger onesies from essentialwhites.com. They carry up to 6T. I prefer one-pieces on Charlie because *everything* rides up on her. We have quite a few one-piece outfits, but for her t-shirt and shorts kind of days, a onesie under her clothes is perfect. She was outgrowing her 4T gerbers so I'm SO glad I found this site! They have size charts, but something seemed "off" so I contacted them and they reassured me the sizes were accurate, they just run really big. I talked to another mom of a SN child online who confirmed they run big. So I hemmed and hawed and in the end, decided to size up anyway, with this result:

They weren't kidding! That is a 5T on her. We were barely getting her 4T gerbers snapped. But the note with it said these will "shrink unmercifully" if you don't follow the directions. So I just didn't follow the directions. Problem solved. They are still a tad big, but will be fine until she grows into them. And she probably won't OUTgrow them for a year or 18 months at least! So anyway, they are good quality (much nicer fabric than gerber) and totally worth it.

I took Adrian bowling one afternoon:

He REALLY enjoyed it! He hasn't shown much interest in any extracurriculars as of yet. No sports, no music, no art, nothing. I'm going to just start enrolling the kid in stuff. He'll figure out what he likes eventually. And I'm starting with a bowling summer camp. And I'm going to just buy him a pair of bowling shoes, because DAMN it's expensive to rent them.

And one day I was in the check-out line at Kroger and the woman in front of me turned around and asked if the veggie hot dogs in my order were any good (they aren't great by the way, but it's one thing I can actually get Adrian to eat consistently), turns out, she's vegan too! And lives right here in my tiny little town! She does a vegan cooking class right out of her home every Monday. I asked for her card and looked her up when I got home. She also does art lessons for "children of all ages" for $15 a pop. So I'll see about that as well. Even if he doesn't really "get into" any of this, it's good for the experience right?

And here's Charlie in Adrian's car seat. I was very curious to see how she did in it. I was considering asking for a Britax Traveller Plus for her, but was concerned she'd be all slumpy in it. I don't think it's going to be an issue now. She actually did really, really well in the Regent. It's not something I'd want to use as an everyday seat, but she did ok. And it reassured me that she'll likely do beautifully in what is basically a more supportive version of the same seat.

We added Claritin to Charlie's daily meds. She seems to have allergies on some level. We are not really interested in testing her though. We think she's allergic to dogs and then she also flares up a bit when the pollen count is high. It's no big deal, nothing a fairly benign allergy med can't handle. She also started getting quite "tremory" again, so we increased her Klonipin a smidge. It's only been a few days but I think I've already noticed a difference. We are scheduling to have the salivary gland ablation done on the other side. She's still just REALLY goopy. Not as bad as before, but she could improve. And we had to ask for size 6 diapers! OMG. 4's were kinda big on her only about a year ago. Now we have to skip 5's and go straight to 6's. I'm NOT looking forward to her outgrowing these and having to do the icky looking youth ones. Oh well, I'm just putting it out of my mind for now. Of course, we still use cloth as well and probably always will. Disposables definitely have their place in our lives, even the ugly, horrible youth ones. :-/

And I ordered one of these. Please don't call CPS on me. I SWEAR it looks like a good idea for Charlie...if not, I'll toss it straight away! But really, I can't keep her head from flopping all over the place in the pool. I have to stay by the side in case she needs suctioned. Right when I grab the suction machine, she likes to throw her head down. I'll update with pics when I get it. And they do make a "SN" neck float you can buy which is basically the same thing, only more expensive. I saw the baby version on a message board with twenty women going "OMG it's child abuse!" So I bought one. LOL You gotta think outside the box when you have a kid like this!

Wow, it's been a long time again!

2011-05-14T19:30:00.003-04:00

I really hate that I can't update as much as I used to. I guess it's a good thing that I don't NEED to update as much though, right? Charlie's health has been amazingly stable. She's now 30 lbs! And as soon as she put on the weight she also shot up another inch and a half, to 37.5". She's looking really, really good and I think we can level her off here for a while.

See, doesn't she look good?:

Adrian also had a growth spurt, he's now 47 lbs and 47". We took him to the feeding clinic only twice and all his issues seem to be resolved, or at least getting there. I don't think it was anything THEY did really. I think he thought, ""Holy crap, mom and dad are serious....I need to eat!", because he got a better attitude about it that very night after our first visit, before we even started any of the stuff they suggested. The key, for him, seems to be waking up his appetite soon after he gets up in the morning. If I can't get anything in him for several hours, his appetite is very poor all day. If I can just get a banana in him within a half hour, his appetite is in high gear all day long. So it's good to be understanding these things now. And his attitude is better so it's not *such* a struggle getting him to eat that banana.

One of Charlie's new nurses wasn't able to take on the case, but the other nurse has been with us for almost 2 months now I think. She gets a little stir-crazy and asked if she could take Charlie places. I said it was fine after a crash course in car seat safety (she learned some stuff for her own kids too!). So now Charlie gets to go on all sorts of "field trips" several times a week. It's great for her and she gets to go around other kids more.

See how happy she is?:

For Mother's Day I got out the camera and took some shots of Charlie outside (on the first nice day of spring, which took *forever* to get here!). I took 12 or 15 pictures and then arranged 4 of them in a frame, two of them being hand and feet shots, just because. It turned out really cute. I did one for my mom and one for me. Here's some of the pics:

And here's me at about 130 lbs! I've been hovering between 128 and 133 for a few months now. I'd like tone up a bit more and maybe lose a little more around my middle (I'm still carrying extra there, believe it or not) but I'm SO excited at how far I've come! And it's truly not hard at all to keep the weight off. I know people usually put it back on, but mine is staying off for good!

No, I didn't fall off the face of the Earth!

2011-03-17T19:10:00.004-04:00

Things have been crazy busy and I'm going through some personal stuff right now so I'm not as up on the blog as I'd like to be. But we are all doing well. Charlie HAS gained weight! She's over 26 lbs now, which is the most she has ever weighed! She's been acting like she's been having some tummy issues lately though, so I'm hoping to nip that in the bud and keep this weight on her. Her pediatrician said this is the healthiest he's ever seen her....we want to keep it that way!

Rockin' her new jeans...

Her new "thing"....curling up in a fetal position. It is REALLY hard to uncurl her!

We've added 2 new nurses to our case. Both of them seem great and are totally cool with all the "weird" things I do, like using cloth diapers. ;-) One of the nurse's moms is vegan, which is really cool. She sent her over with some hawaiian bundt cake and magazines for me. On that note, I'm officially down 47 lbs and in a size 6. Being vegan rocks. :-) And I asked them to check my iron the last time I took Charlie into the WIC office and they were kind enough to do that. It was plenty high at 12.4. I don't even supplement. So that made me feel good...I'm probably doing well in other areas even if I can't check on them at this time.

We also got a small increase in our nursing hours. I'm not going to work full-time like I planned, but I will be increasing my hours. And I will be taking Adrian to work with me, which is awesome! So since I won't be using so many of my nursing hours while I work, I'm looking forward to an overnight once in a while. Charlie has started this new thing where she doesn't want to sleep! I think it's more neurological than behavioral though, and we have a neurology appointment scheduled for next month, thank goodness.

I'm also planning on TRYING to start my own business. I want to make larger cloth diapers for special needs kids. So we'll see how that goes. That has been taking up some of my time too. I've already lined up testers and drafted patterns, I just need to place an order for supplies and get started!

Weight gain and other stuff...

2011-02-07T17:24:00.003-05:00

So I think Charlie is *finally* gaining weight! I have her over 1000 calories a day now, which seems absurd for a non-ambulatory child, but whatever. We got her here and that's what matters. I'm going to weigh her a few days in a row just to make sure it's "for real" since one large BM can drop her weight back down. She does look like she's filling out though.

Just chillin' on the floor:

Adrian really loves playing photographer and took like 40 pics the other night. Here's just a few...

His penguin pillow pet being silly:

And being fed:

And a pic he took of me and Charlie...yes at that odd angle!:

I went through Charlie's clothes and purged a LOT of stuff. When spring comes I'll clear out the long-sleeved stuff she's outgrowing as well. But this is what I have it down to! That's for ALL seasons, minus the pj's and onesies in her drawers. And to be honest, I counted everything and she still has an abundance of outfits. I'll never understand how I got the idea that we all need a crap-ton of clothes, but I'm re-learning everything now. My house is becoming more minimalistic and I'm really digging it.

As for my goals, so far I've done a LOT with my house. I got all three bedrooms purged of all the unnecessary crap. Some of it is still hanging out in the dining room, but even that pile is growing smaller by the day. I got rid of three boxes of cloth diapers! THREE! I don't know why I've been hanging onto them all this time. We went to only prefolds and covers ages ago. So all of the fitteds, all-in-ones, pockets, ect are gone. I made $50 on them. :-) I cleaned out the hall closet and gathered all of our board games and stuck them up there. I like the idea of Adrian having to ask to play them, so he doesn't get out 4 at a time and lose all the pieces. I also made a first aid kit and an emergency kit (flashlights, candles, ect) and put them in the hall closet. I got the utility closet half-way cleaned out. The biggest project still awaits. That would be dealing with all the fabric and sewing stuff. :-/

Adrian is reading better and better every week. I'm just amazed at the progress he's made in the last 4 months or so. Seriously, watching a child learn to read is so incredibly cool, but it's extra special because *I've* been teaching him. He's just dying to be able to read chapter books by himself. He's not there yet, but I told him if he works really hard, he'll be able to do it in 6 months, and I truly believe that he'll get there that soon. He can already read 90% of the words in the Magic Treehouse series (just very slowly LOL).

He's become very interested in Ancient Egypt, so I'll probably come up with some type of unit study for that. He pretty much has adding and subtracting down pat, so we're working on skip counting now and then we'll move onto multiplication (along with other units we do continually like measurement and fractions). He's been playing a lot of strategy games, like Chess and Mastermind. He loves Blokus and he was actually successful at one of the one-player "brainteasers"!:

Slime...we called it "science". :-D

Charlie is moving more and more, which MAY be why she needs over 1000 calories a day. She started doing a "half-sit-up" thing. When she's laying flat on her back, she'll bring her head and half of her torso up off the floor and just hold it there for several seconds. You can see her whole body straining...she works really hard! When you pick her up, she uses her legs to push up to help.

And I may be starting to work full-time. Aaaahhhh! It's so scary but I'm going to at least give it a shot. I work 20 hours a week currently, but I have the opportunity to get 36-40. So we'll see. I have to get the nursing all straightened out and I have to learn to get all my errands done on the weekend. I worked 8:30-4:30 today and didn't have time to do anything after work before the nurse left! So I have to sort all of that out. If I make enough, I may put Adrian in the K program 2 days a week at the daycare where I work. I get 50% off and it would be nice to just take him to work with me. He would love it too. It might be half of the extra money I'd be making, but it would be good for him I think.

School issues...

2011-01-28T15:55:00.003-05:00

I promised a mama bear post so here it is:

Charlie is 3 now and eligible for preschool through the local school district. Obviously in order to attend school she needs a nurse with her the entire time, including transportation. The school district insists they cannot use our nurses...they have to use THEIR nurses from an agency.

So here are the problems with that:

1) Least of all, training more nurses and ensuring they can actually handle Charlie. If you've read the blog for a while you know this is no easy feat. But I know with patience and persistence we can get this done.

2) Charlie's nurses (particularly her main nurse) will have her hours cut considerably. She loves Charlie, but she has to think of her own family first. If she cannot get hours at our house, she will have to go somewhere else. I do not expect it will be easy to find someone to replace her. Nurses don't generally want 4 hour shifts.

3) If Charlie gets sick and has to stay home, the school nurse doesn't stay home with her. *I* would have to stay home with her. Which would be great if I had the option of being a stay-at-home-mom. But I don't. I'd have to miss work, which would lead to smaller paychecks and if done frequently, job loss. Also, if the school nurse cannot be there and they can't get a replacement in quickly enough (one that has been trained with Charlie and approved by me!), guess who also has to miss work? Me!

The school district can't seem to tell me WHY they can't use our nurses. They said they might see if their agency would be willing to hire our nurses, but they'd be taking a HUGE pay cut (like half) to work for the agency during school hours. They won't tell me if it's a legal issue or a financial one or what.

No one has been able to tell me how this affects her home hours. Do her home hours get cut to account for what she has at school? If she's in morning preschool (which would be better for her since she is tired and cranky in the afternoon), she would need a nurse with her at home, before the school nurse takes over on the bus. Our nurses come in at 6 at the earliest. They are not allowed to work only from 6-8ish. They have to work a MINIMUM of 4 hours per shift. So... what? I have to have them come in at 4 in the morning? So they can wake me up when I really just need to be getting rest?

Charlie will get more out of going to preschool. Right now, they only send out the therapists once every 2 weeks. How is it "fair and equal" if she would be getting therapy more often than that AT school? They have more equipment to work with at the school, like a stander, which we really want to try her in. And of course, I'd love for her to be able to be around other kids.

I know the school system across the entire country is jacked up, but this is ridiculous. They KNOW this is an issue. When they saw that I was upset, you know what they said? "You aren't the only person who's had to go through this you know." As if that's supposed make me feel better. If I was the ONLY person complaining, I could see how maybe I was just being over-sensitive. But they are acknowledging that this is a common problem. They should be fixing it! Not telling me that since other parents are complaining, it's ok.

Argh. "Fair and equal" indeed.

Oh and since I've been complaining and at one point told them we would have to keep her home until we got everything worked out, they keep pushing me to just keep her home. Twice in the last two days I've had someone call me and say "So you'll just be sticking with the home-based program then?" No, I'm going to fight you dammit! I don't give up *quite* that easily. And if nothing else, it's the principle of the matter. Even if I intended to keep Charlie home, I'd still be giving them hell because it ISN'T RIGHT. Special needs kids shouldn't have their home lives turned upside-down because there's some dumb rule about not using home nurses.

Videos!

2011-01-27T19:06:00.003-05:00

I've been uploading lots of videos of Charlie lately. They take forever to upload so I never get around to it. Anyway, only links since embedding them doesn't seem to work well for blogger. They don't fit.

Charlie lifting her head during therapy!

Being very persistent with her toy.

With her zhu-zhu pet.

Enjoying some noisy toys.

More head control!

Enjoy!

Adrian's new glasses!

2011-01-21T17:07:00.002-05:00

Just had to share! He has astigmatism in both eyes, plus some color-blindness. I really hope these help with depth perception because he tends to run into doorways and miss steps.

Goals for 2011!

2011-01-19T20:08:00.002-05:00

So I just want to lay it all out here. I have a LOT of goals. And I'm having a really hard time organizing them in my head so rather than go write them in a personal notebook like a NORMAL person, I'm gonna share them with the world! LOL I figure it might help keep me motivated if I fear that one day one of my followers will leave me a comment asking if I've managed to lose those last 15 lbs, or if I've tackled the bathroom closet yet. I don't want to have to tell someone I failed!

My personal goals:

Lose the last 15 lbs. Yeah I know, it's not much and I've already lost a lot. I don't want to put a hard and fast time limit on when I want the weight gone (I honestly couldn't care less if my body is "bikini-ready" by may), but I do need to continually work on it. I think 6 months is a reasonable time frame, but I'm giving myself the whole year.

I need to get my teeth fixed. So I need to either get a job with excellent benefits, find a dentist who will work out a payment plan with me, or just start sleeping with a dentist...I need to get it done. I have a "bad side" and a "good side" of my mouth. That's how you know it's bad. When you can't even eat on one side of your mouth. Well I cracked a tooth on the "good side" today so I'm pretty much screwed. Hey, maybe it will help with the weight loss though! It's too bad I waited until I was 26 to start eating healthy and actually really start taking care of my teeth. They were already too far gone I think. :-(

Household goals:

I'm continually working on de-cluttering and organizing my home. It's a lot better than it was a year ago, but it still needs a lot of work. I need to de-clutter Charlie's whole room....too-small baby blankets, clothes, toys and stuffed animals, medical supplies, ect. The bathroom closet has just been a catch-all and I need to do something about that. I need to purge my old clothes. I still have XL sweaters. I wear a medium now. Yep, they've gotta go! I need to organize my kitchen! I would like to hang more shelves and buy baskets and such to keep stuff from ending up in piles.

I am still struggling to stay organized despite my Home Management Planner. So I'm continuing to work on that. The biggest improvement I have seen using this though, is my finances. I am doing MUCH better with my bills and keeping track of receipts, paycheck stubs, ect.

I want to eliminate unnecessary spending. I know, everyone needs to treat themselves sometimes! But I go through my account activity and always find at least 3 or 4 purchases a month that just were NOT necessary, even if you include "treats" as necessary. Seriously, did I really need to eat subway that day? I don't even LIKE subway! I was just too lazy to pack a snack to hold me over. Did Adrian really need that $6 diecast car? He just had Christmas! I need to budget "extras" and stick to that budget. It's cool to buy toys and clothes and it's fun to eat out. But it needs to be under better control (I know I'm already ahead of the game since it "only" happens 3-4 times a month and it's like $5-10 a pop...I was way worse before I had kids!).

Charlie goal:

I would like to really get her pain under control. Obviously this does not need to be said but I still should have to account for this goal. When she's having a month or two where she's doing ok, I put off calling GI because there's nothing pushing me to do it. But even when she's doing "ok" she's not doing great. I need to push, push, push to get some answers! Along with this goal is getting her weight up!

Adrian goal:

I would like to see Adrian doing well with homeschooling. I have a few skeptics, even people who in general support homeschooling. Let's face it, I'm not in the ideal position to be homeschooling. I work (though only part-time) and I don't even have Adrian full-time. But he's young enough that we don't have to do hours and hours of school a week to make it work, so I'm gonna make it work. I would like to see him finish his first grade curriculum. I'm not thrilled about the idea of possibly putting him in first grade in the fall if he's already covered all the material, but it couldn't hurt for him to have a slight advantage (isn't that why the trend now is to hold boys back a year?). Mostly I'm just excited to see him learning all this stuff. It's like watching a baby learn to walk, except cooler. LOL

Just random stuff...

2011-01-15T16:15:00.004-05:00

So Charlie is aiming for full head control. She's still a long way away, but she has more now than I ever imagined she would have. When her head flops back, she can pull it all the way back up. Unfortunately, when it flops forward, she cannot bring it up even a little bit. She's working on it though! And I can tell she's intentionally working on it too. It's not just at random times it falls backwards and she catches it and pulls it up. She will do it over and over for like 15 minutes, just practicing. It's like a Charlie workout. She's very motivated I think! Also, when it flops down and to the side, if she's slightly reclined (like when she's in her car seat) she can pull it over and back up. And she does that intentionally too. The night we went to see the zoo lights, she kept flinging it forward in the car. I was worried about her airway getting cut off, so I tried to get Adrian to reach over and lift it back up for her, but he was like an inch too far away because of the side of his car seat. So I would try to reach back when we'd come to a stop light (bad, I know!) and pull it up for her, but she'd have brought it back up herself already! She did this like 6 times before I stopped trying to do it for her (I was always about 10 seconds too late anyway).

So I'm super proud of her. She likes to flop her head down so she can let her drool run out, but in certain positions she can't get it back up, so it will be awesome if she figures it out. I think it will mean less suctioning. She's entirely aware of how the secretion-making/drooling/choking/suctioning thing works. I know if she had better head control she would use that to her advantage so she wouldn't need suctioned as much.

Speaking of how smart my kid is, I bought her some flash cards. For learning her letters and numbers. Seems crazy right? Well I ask you this....is there any harm? I know she might never be able to tell me if she's learned anything. The only way we'd know is if she miraculously learned to talk or sign, or we found a communication device/system we could get her to use consistently. But darn it I'm gonna teach her anyway! She loves the flash cards so far. For the alphabet set, each one is printed with a black letter and a colorful picture. I've been flipping thorough them telling her the name of each letter, the sound it makes, and how it relates to the picture. She smiles and squeals, but also has periods of extreme concentration. She just stares at those little cards for minutes at a time sometimes. Like I said, I don't know IF she'll learn, or if she's even CAPABLE of learning. But I'm gonna give her the chance. She'll either learn like a regular kid and will help extinguish boredom as she gets older, or she won't learn and she'll just like looking at funny pictures for a few minutes everyday. Whatever.

Here's a funny pic of her. If this were a lolcats pic, the caption would read: "Did you say it's Christmas!? Oh boy!"

Adrian wanted to share his sucker and rather than hold it for her, he propped it up against her face. What a good big brother. Of course, it wasn't so much fun later when I had to pull the lollipop off her face and hair. LOL

I got Charlie one of those neat little shelves with the bins in it. It is perfect for her room. I didn't want a bookshelf AND a toy box, so this works perfectly for us. Adrian is now asking for one and his birthday is next week, so we'll see...

I finally got Adrian's whole "school area" set up (can you tell I'm on a roll here?). He's doing excellent and a bit above grade level at this point, even though we only do any "formal" schooling about 2 hours a week. What we DO do is quality work I think. He's been resisting reading lately and I didn't understand because he doesn't struggle with it much. Last night he informed me that his phonics books are "boring". Well, I can't argue with him there. We found some books from "Seedling Publications" at the library that are a bit more interesting. He already read one ON HIS OWN (I normally have to bribe him to read) and he proudly read the whole thing for me, only missing a few words (he thought "pillows" was "balls"?). I'm hoping these books are interesting enough to keep his attention. He's itching to read chapter books on his own, though he's quite a way away from that. Anyway, I'm very proud of him!

10000

2011-01-07T14:21:00.001-05:00

I just noticed our hit counter surpassed 10,000! I put it up a little under a year ago. I just love that so many people adore Charlie enough to stop in all the time to see how she's doing! Love y'all!

Just a virus!?

2011-01-07T13:22:00.003-05:00

I took Charlie into the ER the other day because I thought she had pneumonia. She was coughing up lots of really thick stuff and had a really high temp (I think she peaked at close to 104). She was also very irritable and not tolerating her feeds well, which is expected. But we got in there and they did all the usual....x-ray, labs, urine. All of it came back fine. Even her lung x-ray was FINE! Her lungs haven't looked good, like ever. I wonder if it has to do with the salivary gland ablation we did last summer. So they determined it to be viral and sent us home. After another 24 hours of pure hell for Miss Charlie, she's almost back to her regular self. We are being super diligent with suctioning, breathing treatments, and chest percussions so that it DOESN'T settle in her chest (right about now is when it would "turn into" pneumonia).

I've never seen Charlie so sick unless it was full-blown pneumonia, but she did great.

We went to our favorite restaurant on New Year's Day. It is a small, family-owned place with mostly American food, but also some Korean food. They were doing karaoke and the owner got up and sang Rudolph in half English and half Korean, which was really cool. They did door prizes and every kid got something. Adrian got a whole gingerbread house kit. They are just awesome people.

And here's Charlie after she finally started to feel a little bit better.

Just pics...

2010-12-31T18:22:00.005-05:00

Christmas eve, me and Charlie:

Hanging out, waiting for Grandma and Grandpa to get there:

Ceramic dalmatian from Grandma:

Testing out the hot wheels mat:

Papaw sent a BBQ grill for his play food:

Just a happy pic:

Pickle face (just a little taste!):

Columbus zoo WildLights:

Gorgeous!

And the kids really enjoyed them!

More details later!

So excited for Christmas!

2010-12-24T06:09:00.006-05:00

I think...I THINK I'm all done. I finished making all the gifts. I even got the sock monkey done! Which didn't take all that long, really. I thought it would be a harder project than it was. Anyway, we ordered a Car Seat Poncho for Charlie. We only tried it on Adrian so far since I didn't want Charlie to see her gift early! He's 45 1/2" and still just barely fits in a med/lg. They are marketed for up to 48 months so I'd say that's a good size! Adrian's firehouse came in the mail. That was a big splurge for me and probably the last one for a couple of years. I cannot WAIT to see his face this Christmas! Especially since I know I spoiled him this year and he'll be getting clothes and underwear for the next 2 Christmases (LOL, kidding....kind of).

Car Seat Poncho

Just a funny pic of Charlie's hair.

Sock Monkey!

Adrian's hot wheels play mat, outside...

And inside!

So I got a little peeved off the other day. I try not to let things like this get to me but I'm having trouble and I'm just going to get this off my chest here. I recently saw some posts on a message board by some people who were very judgmental about kids getting too many presents at Christmas. "No child needs 10 presents from their parents. That's ridiculous!" And then how kids are taught to only appreciate materialistic things, get spoiled, blah, blah, blah.

I'll be the first to admit both of my kids have more than 10 presents EACH under the tree. And you know what? I'm not ashamed. If you know me I'm ANTI-materialistic stuff. I don't like having tons of toys in my house and my kids don't own a gazillion outfits. We don't even have tv reception, let alone cable! I put a high value on making do with what you have, and using what you have to make what you need. When we moved, I purged a TON of unnecessary items from my house in preparation for the holidays. I gave it all away so someone else could use it. I prefer to buy second-hand and I swap things with friends. I try NOT to buy things from stores.

So why would a gaggle of women automatically assume lots of presents=a ton of store-bought, unnecessary, junky toys? I have no clue. Even if it did mean that, does it even REALLY matter? Toys are not what spoil a child. It's a certain type of parenting that spoils a child. Your child could have 4 toys in the whole house and be more spoiled than a child with a 20'x20' playroom filled wall to wall.

I don't buy much throughout the year. Even if it's necessary, I hem and haw, look for used or a good deal, and sometimes still put it off if it can be put off. But at Christmas, I like to give my kids everything I can. That includes homemade things, second-hand things, and *gasp* store-bought toys! It includes necessary things and unnecessary things. I want my kids to be excited for a few weeks out of the year about getting things they don't normally get.

This year I saw a good deal on Disney personalized blankets online. I snatched up two of them. Adrian definitely needed a blanket anyway. Charlie has a ton, but she's actually getting too long for a lot of her baby blankets. They are just ADORABLE blankets! And even though they are a "need" and not a "want", they are fun and special enough to be wrapped and put under the tree. Same with the winter hats I made them, and the slippers I made for Charlie.

Four of the toys are hand-made and beautiful (not to toot my own horn). One gift (the car seat poncho) supports a small business and is proudly made in the USA.

The store-bought firehouse...well, Adrian has this amazing imagination. All of his friends are getting obsessed with video games, but his little head is still filled with stories of his own creation. I want to drag that out for another year or two. The firehouse is versatile and very much like a dollhouse, with the beds, kitchen, bathroom, ect. The store-bought 53" plush caterpillar I didn't intend to buy. I went to the Dollar General to get a $1 bag of marbles for the Goodwill marble run I found for Adrian. I walked out with that AND the caterpillar. I saw that and thought "What a great positioning device for Charlie!" Heh, therapy toys.

The firehouse:

I get being irritated with how materialistic this country has become. It's annoying to hear kids screaming in every store for some stupid princess doll or whining about not getting the latest video game. I get downright pissed off when I hear someone complaining about the cost of groceries and feed their kid nothing but mac'n'cheese and hot dogs when they regularly splurge on expensive shoes and techy gadgets. All of this is VERY annoying. But don't ASSume that this is the case for everyone.

Perhaps you overhear a mom talking about the disney vacation she splurged on for her kid's birthday. Maybe you would think "Wow, that kid must be really spoiled! I'd never spend that much on MY kid's birthday!" You don't know their situation. Maybe her kid was diagnosed with a terminal disease and she spent his college savings to take him. Or maybe you overhear a mom like me talking about about how her 3ft tall tree was drowning in gifts this year. My post explains that one. If you've read my blog a long time, you'd know that last year I made all their gifts but was also sponsored by palliative care. The year before that I spent $25 total. And that included my dinky little 3 ft tree. Another person might have fallen on hard times and suddenly gotten a $1000 check from a generous relative and was finally, FINALLY able to buy their kid clothes, shoes, and toys with which he'd gone without for the last 6 months, along with paying off her gas bill, so it doesn't get shut off. Another parent might have bought their 5 year old an Ipad (crazy, right?), and what you didn't hear is that the child has autism and is non-verbal and they intend to use it as a communication device. You just never know.

So anyway, that's my rant. I honestly feel embarrassed for people who say these things out loud. Or type them out where they are etched into cyberspace forever. They don't know what other people's kids need. I'd venture a guess and say none of them have a child like Charlie, who's health is rocky even on a good day, cannot run and play or enjoy life in the same way as other kids. Or they have never had to sacrifice time with their older child to take proper care of the sick child! Adrian has it rough too. Of COURSE I "spoil" my kids! It's my right as a mother! LOL

But in the end I do feel like I'm teaching them all the right things about consumerism, needs vs wants, and how to be a giving person. Charlie helped me make handprint molds and Adrian very carefully chose 2 inexpensive gifts for his dad and grandma. Store-bought, yes, but special nonetheless.

Christmas is just around the corner!

2010-12-12T09:28:00.002-05:00

And I didn't get *nearly* as much crafting done as I wanted to! I had a very long list of stuff I wanted to make for the kids and there's just no way I'll get it all done. But at least now, having a job, I can actually afford a little bit more store-bought stuff. I got more play food made for Adrian:

Corn dog (his fave food), sugar cookies, french bread, a blueberry muffin, tea bags, and mixed veggies.

I'm still working on his hat, a fold-up hot wheels play mat, and pajama pants for both the kids. I would like to make Charlie one more toy but I can't think of anything else for her! I was going to do a sock monkey but I just don't think I have the time.

I made hand print molds for all of the nurses. I was worried it wouldn't work because Charlie's hands are hard to open sometimes and doing her hand print in paint was a total disaster, but it actually works *really* well in clay. I used a recipe I found on-line so it was really cheap. 1 cup of flour, 1 cup of salt, 2 cups of water and some food dye. Roll it out, press her hand, and bake it. Easy peasy!

I have a really good, FREE idea for my boyfriend since he hates when I spend money on him. I don't know if he reads here or not, so I won't say what it is, but it involves World of Warcraft. And it's a totally dorky thing. LOL

Bring it on, holidays!

Autonomic stuff...

2010-11-25T18:40:00.004-05:00

So we all know Charlie has autonomic problems. This is nothing new. Her doctors talk about it and refer to it. They don't dismiss it when I bring it up. However, they won't DIAGNOSE it. Why? I have no clue. It's not like they have to run tests to diagnose it. They keep passing it off to someone else. "Well, I don't really handle that type of stuff. Maybe her neurologist will talk to you about it." I've talked to like 5 doctors about it and they all just keep passing it off. WHO diagnoses this crap!? It's not like she needs immediate treatment. Her oxycodone and klonipin have it pretty much under control at this point, at least so it's not negatively affecting her quality of life. She experiences "episodes" nearly every day, but they aren't too bad usually. So why do I want a diagnosis? So when I try to get answers about OTHER stuff I don't have to talk about it in detail for a half hour before getting to my point. If they can see she has an autonomic disorder in her chart, can see her symptoms there, I don't have to explain it all to them. I think her GI stuff is closely related and it would be helpful to have doctors looking at the WHOLE PICTURE. I'm partially writing this blog post just so I can organize my thoughts and pics so maybe one day I can just print out the whole damn thing, hand it to a doctor and say "Diagnose her already for crying out loud!"

So this is the first time I noticed very odd coloring in this manner. It's like someone has drawn on her face. See the definite line right under her chin? Yeah, weird.

And it happened again, just a small line down her cheek:

And again, this time more severe:

This is "mottling" she's been experiences several times a week for the past year and a half, maybe more. She usually experiences it in times of stress and/or pain:

Odd spots that crop up all over her body, in the oddest places. Not pressure spots that we can tell. They come in clusters. She never has just one. When one pops up, you know she'll have 5 more by the next day. They last about a week. I'm not positive they are autonomic, but it's probable I think:

Her nurses chart them and they can't find any physical reason she would have them. Sometimes they are very small spots the size of a dime. Sometimes they are much bigger.

Other issues: Obviously there's the convulsions that aren't seizures. I've discussed this with several doctors and it's likely they are autonomic crises. She sweats profusely for seemingly no reason, usually accompanied by pain, mottling of her skin, and high heartrate. She overheats VERY easily. She also has difficulty keeping her temp up, but not bad as the overheating thing. Her heartrate goes wonky. Not as bad now than before we got her on meds, but it can still go super high when she's stressed. Over 200 at times. I'm sure there's more but I'm blanking. It'll come to me later. LOL

So if any of you know how it works with the doctors PLEASE let me know. I want this IN HER CHART!

Chilling on the floor after her nap. Since she was on the floor and I was in the chair, I had my foot down where she could see it and I kept "waving" it at her, and she would wave back. LOL Then I made it "talk" like a puppet and she thought that was great fun.

Her nurse made her some slippers out of fuzzy yarn. She looks like part muppet doesn't she? LOL She loves helping her nurse knit. She holds the ball of yarn while her nurse knits and gets to feel all the different textures.

And Charlie gives kisses now! When you ask her for a kiss she kind of flings her head at you. LOL She'll do it with stuffed animals too. Her nurse got a good video of it so if we can get it to go through my email, I'll post it here.

Things have been crazy!

2010-11-16T13:31:00.006-05:00

We've been quite busy lately. Charlie had a Phys Med appointment a couple of weeks ago, we're gearing up for Christmas, we've had some car trouble, and it's been so beautiful out we've had trouble staying indoors! It's unseasonably warm for Ohio, but I'm not complaining! It's rainy and cold today, but it's supposed to warm up again for a couple of days later this week. Charlie has been able to go on a lot of walks. Here's a pic from last week:

I gave her a leaf to hold and she held onto it for probably a half an hour. When I asked her where her leaf was, she grinned at me and lifted up her hand. LOL

Adrian has hit a big growth spurt I think. He gained 3 lbs in two weeks, which is a huge deal for him, since we have trouble getting him to eat. He's been gaining and losing the same 2 lbs for over a year now. But now he's eating about as much as me and I'm just crossing my fingers that he doesn't outgrow his size 7 stuff this winter!

He's also starting to read very well. He's been able to sound out short vowel words for about a year now, but now he can do it quickly and without stumbling. He's also picked up the concept of sight words, which makes him read a LOT faster. Even 4 months ago, he couldn't read the word 'dog' in a sentence and remember it if it was in the next sentence. So that's a big step I think. He's also getting "brave" and trying words outside of what he's learned. His most recent big words that impressed me were sleep, blanket, and because. I'm proud of my little guy!

Unfortunately, he seems to have developed some sort of stutter over the past few months. At first I didn't think much of it. It almost sounds like he's just having trouble thinking of the word he wants. But now it's obvious to me he KNOWS what word he wants but just can't get it out for some reason. He has a very good vocabulary for his age, so he shouldn't be stumbling over words like dog, want, and food, you know? But thankfully, Charlie's old speech therapist offered to take a listen to him off the clock so I don't have to jump through a bunch of hoops just to find out it was nothing. And of course, she'll also get to visit with Charlie!

This is the first present of the season, wrapped and already under the tree (that we put up the day before halloween...what can I say, the kids love it!). It's a princess crown and wand for Charlie. Shhhh....don't tell her! I've also made her a winter hat and some slippers.

So the Phys Med appointment just about made my head explode. It's a LONG story, that I don't quite want to get into right now. Maybe I'll copy and paste what I already wrote at p-2-p. For now, let's just say, this doctor didn't know his ass from a hole in the ground. He actually seemed to think Charlie was TOO disabled to benefit from any of the equipment I wanted for her. I eventually got the scripts for the stuff, but it was like pulling teeth. And he left out some primary diagnoses that would help get medicaid to pay for these things. I may just have to go to one of her other doctors and ask them to re-write them. And I still need to call back the clinic and let them know that we will NOT be seeing that doctor again (we have an appointment in Feb). Aside from being dumb, he was also condescending and arrogant. Just not the type of doctor you want to deal with.

We added a new nurse to Charlie's case. She's an IP and also the RN for one of our other IP's, so they are close and communicate very well. We actually have all of our hours covered for the first time in probably....6 months or so.

Charlie had a little bug for a while and when it was obvious she was not going to kick it on her own, we did the antibiotics of course. I swear her gut problems get better when we do tobramycin! I don't know what it is about THAT drug, since it's an aerosol and shouldn't even affect her gut, but all I can figure is if she has some sort of infection always brewing to some degree and we knock it out with the tobra, maybe her whole body functions better for a while, until it comes back. I need to ask her doc if it's possible to put her on a maintenance dose. So she's been doing pretty well on her feeds. Not 100%, but better than last month.

We got her diapers paid for by medicaid. We use cloth primarily (maybe 1-2 disposables a day), but still, that's a little chunk of change I don't have to worry about every month. They gave us the run-around for a few weeks because the pharmacy swore up and down they'd only pay for pampers. Well, I refuse to use pampers. The funky perfume in them make it hard for ME to breathe...I'm not putting them on my kid with chronic lung disease! When we moved we switched pharmacies...it took them a while, but they got it to go through for huggies. I honestly didn't care if they only approved the store brand....anything but pampers!

That's about it for now I think!

2010-10-21T19:53:00.002-04:00

So I haven't been updating because things have been crazy. We moved 2 towns over into a 3 bedroom apartment! The rent is a lot higher but still within our budget. I try not to hyperventilate when I think about it. LOL I'm closer to work now. And closer to children's. And Charlie's pedi is right up the street. I don't have to fight traffic for 20 minutes just to get to a decent grocery store. It's just generally a MUCH nicer area.

But first:

Charlie in Adrian's old PJ's....awww!

See?

Ok, now apartment pics!

Living room...I'm not running into furniture every time I turn around!

Charlie's bathroom! I no longer have to haul the chair out of the tub every time I want to shower. :-)

My bedroom...the smallest in the whole place...but that's ok, I don't have much stuff.

The kitchen...I know it doesn't look like much, but it's like twice the size of my old one. I had like 4 sq feet of counter space in that one. And it has my very first dishwasher EVER!

Charlie's walk-in closet...it fits everything! No more supplies taking over the house!

Charlie's room...even her wheelchair fits!

The other bathroom.

Adrian's room! It's huge! I can fit all his school stuff easily so it's not taking over the rest of the house!

I also have a dining area, but I didn't take a picture because that's where all of our empty boxes are hanging out for now.

Can you tell I'm excited? LOL I've always felt like things were just slightly out of control. I couldn't fit all my stuff in my house. I couldn't keep things organized. I could never find what I needed when I needed it. I'm not a great housekeeper and not having a house I can be proud of does NOT help matters. But now I'm REALLY eager to get things in order. I don't want to have to turn the house upside-down an hour before our WIC appointment because I can't find our WIC card!

So I've gone completely over to the dark side.

Yup, that's my Home Management Planner. Complete with colorful graphics. LOL Google it...you'll be surprised how many people feel these are necessary to keep a home running smoothly. I gotta say, I'm already feeling more in control. Before, I used to just stick everything in a junk drawer. When it came time to pay the water bill, I wouldn't be able to find it. Or I'd not have one of the kid's birth certificates when I needed it. No more!

The very first section is emergency information. Family's phone numbers, gas and electric numbers (for outages and leaks), apartment maintenance number. Children's hospital, pedi, pharmacy...you get the idea. Also a few print-outs on how to put out kitchen fires and stuff like that. Section 2 is all my apartment stuff. Lease, community policies, ect. Section 3 is car stuff...title, copy of my registration, insurance info, maintenance reminders, ect. Section 4 is meals...a list of 29 meals I can make quickly and easily using stuff I likely already have. Since I'm forever complaining that I eat the same stuff over and over. A "master" shopping list containing all the items I regularly use. I don't buy it all of course, but I can look through my meal plan, then down through the list and pick out what I need. Then a measurement conversion chart and a baking/cooking substitutions chart. And blank calanders so I can full in my meal plans. Section 5 is finances...budget, bank statements, paycheck stubs, bills, ect. Section 6 is chores...daily, weekly, and monthly with blank calendar pages. I have an "other" section with energy saving tips, our homeschooling schedule, projects I want to work on, ect. I also have a folder for odds and ends, a pouch for birth certificates and SS cards. Oh, and a pouch up front for scissors, a pencil, pen, and gluestick.

I still want to add house rules and cleaning lists by room.

I've had a LOT of fun with my 3 hole punch!

And I'm completely redoing Charlie's notebook, which is basically the same concept. It was very outdated.

My boyfriend wants to know when I start therapy. Ha!

Well, whatever. I'm soon going to be the mom all the other mom's hate because I have it all together despite being single, working, homeschooling, and having a SN child. Is it weird that I WANT to be that mom?

Happy Birthday Charlie!

2010-10-05T07:36:00.002-04:00

Photo and video editing at www.OneTrueMedia.com

Zoo trip!

2010-09-21T13:20:00.003-04:00

Charlie got to go to the zoo for the first time! Adrian has been before but it's been a few years (before Charlie was born) and he didn't even remember, so you could count this as his "first" time too. Both of them LOVED the aquarium. We stayed in there probably 45 minutes. Me and Charlie's nurse took turns holding her up so she could see the fish swim around. They both got to touch some crustaceans. The polar bears were hamming it up for the crowd so that was fun. Charlie didn't seem like she could even see the polar bears at first. I don't know if it was because of the sun or what. Finally she focused on one of them and smiled. So I know she got to see them. I took Adrian up to see the lions, but it was very crowded so Charlie's nurse decided to wait for us at the bottom of the ramp. When we went down to find her, she had found a little hidey-hole where you could peek in and see the lions REALLY well! So we got a good view without the crowd. The monkeys and gorillas were fun, as always.

Some more crazy Charlie hair:

Passed out after the zoo!

Playing with Grandma's cat...he plays back!

And Adrian lost 3 teeth in the last week!

So this is my "exciting" post!

2010-09-14T09:45:00.004-04:00

Some of you have seen this already I'm sure. I'm posting here because I want to talk about the special needs parenting aspect of it. If you've seen it already...read anyway! I have some important things to say!

Sooo....I've lost 35+ lbs! I never was a larger person. After Adrian, I hung on to the baby weight for about 9 months, but then it all fell off and I actually got below my pre-pregnancy weight. After Charlie....not so much. When Charlie was born, I really stopped taking care of myself. I still showered and wore clean clothes, but that was about it. I didn't care about my appearance. And on top of that, I was so focused on taking care of this fragile little girl, that I didn't care about what I ate! It started in the NICU. After we left the Ronald McDonald house, I went home and just drove up every other day or so to sit with Charlie. My mom usually did the alternating days. I was always in such a hurry I'd just run out of the house and grab something at McDonalds's...it was on the way! Then at night I'd be too tired to cook a lot of the time and it was either frozen pizzas, fast food, or PB sandwiches. Even after she came home, I fell into this routine. I was pumping 6-8 times a day, our schedule was packed full of therapies and doctor's appointments. I remember one month, the only free days we had were weekend days. There was something on EVERY other day! So you can see where my focus was.

I ended up actually gaining weight. After Charlie was born and after some of the initial baby weight came off (fluids, ect) I was at about 165 or so. I thought with pumping for one kid and nursing the other I'd be fine with eating badly. I was WRONG. You can't eat like that! My highest weight was about 180 I think, but I tended to settle at 176, thankfully. Really, the way I was eating I should have been over 200 easily. The weight was hard on me. I was self-conscious even at a healthy weight. I would actually avoid looking in mirrors and reflective windows. Sitting in the PT room at therapy, with the big mirror covering the wall was like torture for me! Still, I could not bring myself to change the way I ate.

I didn't just eat badly, I ate for comfort. One of my favorite things to do was grab a fast food meal or a big box of candy (or both) and curl up with a book. Particularly fantasy books so I could escape the real world for a while. Every time Charlie would go into the hospital, I would binge on crappy food. Which is plentiful at the hospital. When we took her home on hospice in May of 2009, I binged then too. I went to the store and consciously bought everything bad I craved and ate like crap for 2 weeks. I KNEW what I was doing! But I still did it.

For months I told myself I would not let Charlie's health determine my BMI anymore. She's everything to me, but I cannot let her control my health like that. I was bound and determined to FIX MYSELF. I did not go see doctors, or therapists. I did something I'd been thinking about for a very long time. I went vegetarian! Now, vegetarianism doesn't just magically help you lose weight. But for once I was doing something important to ME! I think along with this change I gained some self-respect and some motivation. I was vegetarian for about 2 months before I even really lost weight. I still had issues with over-eating after all. But I felt like I was making a DIFFERENCE. I felt what I was doing was important.

With my diet change I noticed immediate health improvements. Most of my GI problems disappeared. I've always had awful reflux. I had been taking meds daily for quite some time. Well, it vanished almost overnight. I haven't taken anything for it in 9 months. And I'd always known I had problems with dairy so I gave that up too. More GI problems disappeared (the more embarrassing ones that I won't get into!). And that's when the weight started to melt off. I started eating 8-12 servings of fruits and veggies a day. I learned to love green smoothies so I could get in my leafy greens without gagging or smothering them in dressing. I started eating whole grains and eliminating refined ones. I was trying tons of new foods! Lentils, quinoa, seitan! I was trying new dishes! Curry, falafel, bean burgers! I was cooking with new spices. And I was truly APPRECIATING my food as I never had before. Not as something to bring me comfort, or just fill me up. But as something nourish me and energize me. I realized that Charlie needed me! She needed me to have more energy. To not end up with diabetes or otherwise sick.

And so here I am, 9 months later and 37 lbs lighter. People keep asking me if I'm going to start eating "normal" again. Why? So I can get fat again and have my reflux come back? No thanks. I'll admit to missing cheese, but I don't miss meat at all. I don't crave it at all. I remember how I felt with the reflux. Constant pain, always a feeling of something "stuck" in my throat. I won't do that to myself again. I'm vegetarian for good. Right now I'm essentially eating a vegan diet, but I'm hesitant to identify myself as vegan because I feel it's a lifelong commitment, not something you can fall in and out of as you choose. Vegans are different than vegetarians in that vegans are primarily in it out of respect for animals. The original definition of "vegan" actually states that it is out of respect for animals. Obviously language evolves, but I still respect the original definition. So that's why I call it a "lifelong" commitment. I don't feel like you can choose to respect animals in such a fashion and later say, "You know what, I just don't really care that much." You either do or do not care about the cause. So because my reasons are 3 fold (health, environment, and the animals, in no particular order) I do not call myself a vegan. And because if it came down to it and my health lacked from complete elimination of animal products I would probably resume some amount of them (probably 1 free-range egg a day). So call me a "strict vegetarian" for now, k? ;-)

I could probably talk about this forever. I want other moms to know it's OK to do something for YOU! I think moms of special needs kids in particular do not take enough time for themselves. I didn't change my diet to lose weight...it was just a nice side effect. After 2 years of struggling, I don't even have to think about it anymore. I've always been concerned about the environment and after Charlie was born I was aghast at the amount of trash going out of my house, most of it from medical supplies alone. And I was using more disposables than I used to. And using my car a heck of a lot more for appointments and such. I felt like I was undoing all the other good I was trying to do. Well as it turns out, eliminating animal products does more to reduce your impact than any other "green" practice. So I'm feeling better about the other things I've slipped up on. I'm still using disposables for Charlie but I've thought long and hard about it and I think I will continue to use a combination of cloth and disposable even after Medicaid pays for her diapers. I was looking forward to the switch before, but knowing the good I'm doing has given me that extra push I needed to keep up some of my old, green habits. I'm doing it for ME. To make ME feel good. And it feels WONDERFUL!

Of course, I can't leave you hanging without pictures!

In mid-January, at about 173 lbs (having lost 3 lbs already):

In June, I think, at about 160ish:

Last month, at 141 lbs:

Face close-up, before and after:

Same shirt, before and after. Thankfully it's stretchy! And that's a wax statue, btw!:

I still have some weight to lose, but at least I'm much healthier now. And I'm not actively "dieting" so there's no fear of falling off the wagon and gaining the weight back. Sometimes I eat a little too much sugar but I catch myself, especially because it makes my teeth hurt. LOL I can't wait to be a size 6 again and I know it will happen in good time! :-D

Well we're home...

2010-09-10T14:43:00.002-04:00

We got home on Sunday afternoon. They never did find any reason for the pain. In fact they think her motility is "great". ??? Now it hasn't been happening all the much recently but I've WATCHED this child bloat up with feeds. That's not normal! Maybe she was acting normal during the test, but I don't think that's conclusive enough to say she's completely normal. Ugh.

So we went home with a new formula, which has been a pain in the butt to get. They sent us home with a 3 day supply, which has lasted almost 5 days since she's not really tolerating this one any better. And we still don't have more. I ordered it from a pharmacy that takes WIC, but they didn't order it when they should have (called me 2 days later to verify) and now it won't be in until tuesday. We did find 17 cans at the Kroger pharmacy but our coupons are for 24 cans. I don't want to "waste" cans because they didn't have enough for an entire coupon. Our nurse called around and found a smaller, local pharmacy that has a customer that said she'd donate her extra cases to us. Whoo-hoo! I guess her child is on a different formula now. So that will hold us over until the order gets into the pharmacy.

Charlie's CP clinic appointment is on tuesday. I'm definitely going to bring up the issue to them. I'm so tired of this. I hate that she's in pain. And we keep fighting to feed her, as if putting a few lbs on her will make her all better. Even IF we get her to gain, she's still going to scream. Keeping her fed is not the only issue. I'm seriously at the point where I want to say, "to hell with it" and have them put in a line. My little girl deserves to live without pain.

Update...

2010-09-03T21:44:00.002-04:00

There's not a whole lot to update. They did a GI scan this morning and it showed that her motility in her small intestine is actually quite good. When they tried her G it didn't do anything except go up her esophagus, which we already knew...it's why she got a J tube in the first place! She didn't handle her pedialyte after they bumped it up to 40 yesterday but she's done ok on 38 today. Of course, that doesn't mean anything. I've seen her tolerate as much as 48 and NOT tolerate as little as 30. She's a very random child. There's no rhyme or reason to her crying spells. We are about to start her on half strength Peptamen Jr. Cross your fingers that she likes it! If she doesn't, we're back at square one.

Inpatient!

2010-09-01T22:57:00.003-04:00

So my super exciting post will have to wait a few days....we are at Children's! This is not a bad thing. I took Charlie to her GI appointment with the new doctor yesterday, told him what was going on, and he said, "Ok, let's get her in here and find a way to manage her symptoms". Okey-dokey. I thought I was going to have to beg and plead and throw a temper tantrum. LOL

So yesterday, Charlie's nurse picked her up out of her bed and her tube fell out. Whoops. Apparently the balloon had deflated. This was the first time a pulled tube didn't inconvenience me....we were headed to children's anyway! So they fit us in right before her GI appointment. Then we did the GI appointment and went home. Today, we had to do her ultrasound appointment and then go straight to Admissions. The guy was checking us in and he handed me the general consent form and asked if I'd filled one out before. "Yeah, this is the fourth one in 2 days!" Crazy. Although, I can't imagine they can look at Charlie and not realize that we do this stuff all. the. time.

Anyway, the ultrasound showed that her main salivary gland they did scarred up just fine. He did not do the other main one (between the 2 "main" ones, they produce 90% of our saliva, the other 4 are not as productive) because they have to be careful about drying the kids up. But he said in Charlie's case, there's no reason we can't do the other one. She'll never eat orally and at most, we'll have to swab her mouth, which we do all the time anyway, since she leaves her tongue hanging out! So we're going to schedule that.

So yesterday, the GI doc said to just run Charlie on pedialyte or diluted formula, just to keep her hydrated until we admitted her. Well, she made it till noon today and started screaming. Her nurse said it's the worst she's ever seen her. So I didn't even bother hooking her feed back up. They were planning on putting in an IV anyway. A few hours off won't hurt her. So she was off all the way until bedtime. When I put in (some of) her meds, she SCREAMED. For like 1/2 an hour.

Well. This admission came at a perfect time huh? I can't believe how quickly she can go from tolerating 90% of her feeds to screaming when we try to put a few mls in her. This is nuts. Oh well....tomorrow we'll trudge on. They are going to look at her bloodwork. If she's anemic they are going to look for ulcers. I think they want to put her under GA to go down and look in her intestines. Normally I'm freaked out about GA but I can't do this anymore! I'm at the end of my rope! So I'm not even going to hesitate. They need to see what's going on so we know how to treat her. He wants to see if there's any "distended" parts in her intestines. If there are, it means she's not pushing the formula through and she's stretching herself out. And we shouldn't try to cover up the pain with meds (because then we wouldn't know when to stop her feeds before serious damage occurs). But if it all looks fine, he thinks meds might be a good option. There's other things they are going to check too. And we'll be starting a new formula.

Whew.

I can't believe it took this long to get something done. But when you find the right doctor, it can be done QUICKLY! Holy cow.

Best part? They stuck us on a different floor than usual and we have a big room with a big bathroom and we have a mini-fridge! I'm sooo going shopping and stocking it tomorrow! I hate eating the food here. It's expensive, not good for me, and doesn't even taste that great.

There's also computers on the floor so I don't even have to go downstairs to update! This is like Park Place compared to Baltic Avenue. LOL

Carnival!

2010-08-30T18:01:00.004-04:00

The daycare where I work had a carnival the other day so I took the kids. It was the first time my co-workers met the kids and of course they just thought they were adorable! We had many, many comments on their hair. LOL You know, I never really liked attention that much, but when you are the parent of a red head, you have to get used to it. That goes double when you have 2 red heads and triple if one of them has special needs. :-D

Charlie getting her hands painted (instead of her face) so she could see the pretty pictures. She got a fish on one side and a rainbow on the other.

Adrian in the bounce house. I think that was his favorite part!

In the fire department's camper that simulated what to do in a fire. Adrian thought it was really cool. He was just telling me the day before that when he grows up he doesn't want to live in a house, but he was going to get "one of those little houses you drive around".

One of Adrian's prizes. I don't think she was impressed.

Adrian picked a kitty face. "Rawr!"

Let's say it all together now..."Awwww!!!"

Well we've had lots going on but it would take forever to type it all out so I'll summarize.

GI problems: Still a problem. We visited the ER once because I was thinking maybe the pain WASN'T from her belly. I had them check her ears and hips and just generally give her a once over. It's still just the belly pain though. *sigh* We have an appointment tomorrow. Hopefully we'll get some answers, or a med to try, or a new formula to try.

School: We're still in the process of enrolling Charlie in preschool. It is a very LONG process. We've had about 5 meetings already and we're not even done yet! We still have to figure out the nursing situation and write up her IEP. She might go to one of the schools I went to briefly in the 4th grade!

Communication: We're having great success with the head pillow switch! She's using it to turn on electronic stuff, like lights and radios. We're going to do a fan next. And we're hoping to start using 2 switches, one for each side, so maybe we can give her choices.

We also have an ultrasound to check on her salivary glands on wednesday. I'm eager to do the procedure again (though on a smaller scale) to see if we can get even better results.

I have a very exciting post coming up. More to do with me than Charlie, but I'm sure all my readers will still love it! Maybe I'll get to it tomorrow... ;-)

So a little bit on Adrian...

2010-08-03T20:52:00.002-04:00

I really did try to keep Adrian's blog updated. But things get crazy ya know? I have to say, I AM a bit more dedicated to Charlie's blog (not to the KID, just the blog LOL), mainly because I know she has a lot of followers. But since I failed so miserably at Adrian's, I guess I'll start talking about him more here.

So for starters, he's grown quite a bit. Well, in height at least. He doesn't gain weight because he still refuses to eat most of the time! Which we did take him to the doctor for, btw. That was pointless. The doctor's advice? "He'll outgrow it". Uh-huh. I bet he will. In the meantime, I'm having a freaking fit over here! Adrian is so healthy I really don't have to worry about him. His crazy eating habits are the ONLY thing I worry about. And I'm not one to freak out over nothing. And I'm not freaked out. Not like I do with Charlie anyway. I just don't understand why a 5 year old doesn't know when he's hungry, waits until he crashes to realize he needs food, refuses to eat until sometimes 5 pm and then eats for 3 hours straight in the evening, and then sometimes barfs because he ate so much. It's not NORMAL. Well, I really hope he outgrows it soon. :-/

He's lost one tooth, in addition to the one he had pulled years ago. And he has 3 more loose teeth! He's really "into" Power Rangers and I think he's itching to take karate so he can kick some butt too. We're looking into it. We're still probably going to home school him at least through kindergarten and he's doing really well with that. Now that I'm working and can't spend as much time doing the school stuff, I'm trying to coordinate better with his dad so we can keep doing this without dropping the ball on the kid.

Anyway, look how TALL he is (that's his ginormous Regent car seat)!

All dressed up for church with Grandma.

And he enjoys climbing in Charlie's crib and keeping her company during her Vest treatments:

"Cheese"!

He looks like he's being sweet, but he's actually staring her down and trying to freak her out.

"Hey what happens if I stick my hand in here?"

"Hey cool!"

"My hand feels tingly now!"

And Charlie playing her piano. :-)

Firsts....

2010-07-30T19:38:00.003-04:00

You don't get to experience most of the "firsts" you normally do when you have a severely disabled child. With Charlie, there's been no first word, no first steps, and no first solid foods. I can't write in her baby book the first time she rolled from belly to back or the first time she sat up on her own. It's all upsetting sometimes. Mostly I've come to terms with everything. I do accept her the way she is but I still get sad about it. I've learned to celebrate the "inchstones" as many SN moms say....the little things, not quite milestones, but worth celebrating in their own right. Some of Charlie's "inchstones" have been kicking her legs, using her voice to communicate basic needs, and rolling from her side to her back. All of these things a newborn can do, but we had to wait many months for them. When you wait that long for something, it becomes a big deal.

Unfortunately, having a child like this, sometimes you start missing out on other "firsts". Even though I try to let Charlie experience as much as I can, she doesn't get out much. She's not handling extreme temps well so we don't do a lot of outside stuff. It's difficult to take her places so a lot of times she stays with her nurse. I'm trying harder though. We haven't had as much nursing lately and I've been dragging Charlie along with me everywhere, even the grocery store! It's taken me a while to figure out the logistics of everything. How to get all the groceries TO the check out is a big ordeal. I take her into the store in her stroller and have two hooks attached to the handle that I hang cloth bags from. Then I load up the bags and just stuff the heavy stuff underneath. I always take her off her feed so it's one less thing to haul through the store. One day I had 3 errands to run. I HAD to get them done that day. But all 3 were quick in and outs and I hate getting her in and out of the car that much. It's a pain in the butt and time-consuming to strap her in. Taking her out is just as time-consuming because I have to be ultra-careful not to rip out her tube. All 3 errands were pretty close together so I parked at the one in the middle of the other two and carted her around in her stroller! It was quite a walk, but it was more relaxing than getting her in an out of the car 3 times. It wouldn't have worked in 90 degree heat, but since it was a milder day, she did ok (not great, but ok).

So my long, drawn-out point is, I'm *finally*, after almost 3 years, figuring out that I CAN take Charlie places. And this will hopefully lead to other "firsts". First zoo trip, first ride in the big SN swing at the park, first trip to the beach, first movie at the theater. We're going to do it all! Really! Maybe not all right away, but we're going to do it.

So another first I never would have imagined I'd be so excited about....her first mani/pedi! Her nurse asked permission to do it. Of course she could, why not? It never even occurred to me that it might be something Charlie could enjoy. I'm not a girly-girl at all. I don't even OWN nailpolish. But thanks to having other women in her life that actually understand little girls, Charlie gets dressed up, her hair done up, and her nails painted! She's lucky if I even brush her hair (what's the point when it acts so crazy?), dress her in girl's clothes (the boy's clothes fit better), and trim her nails. LOL

So here's her pretty nails:

And her pretty hair of course:

Here's another first...first head switch! She got the hang of it even faster than the button she used before. She "asked" for candy no less than 15 times using her switch. You can see the sticky stuff around her lips. LOL

And just a cute one....she had a rough night and I took her in my bed. Once she was sleeping peacefully I snapped a pic. It's dark, but oh well, she's still precious!

Tummy troubles (again!)

2010-07-17T09:22:00.003-04:00

Well, it's been going on a month or so now. The screaming, the cold sweats, the retching, the blood pouring from her tube. And a new symptom....*horrendous* breath. We take very good care of Charlie's teeth so this one threw me for a loop, until my mom reminded me that bad breath can come from the gut too. Then it all fell into place.

We have an appointment with a new GI next month. Maybe that will help. I researched doctors at the hospital a bit and found out we already saw the two most respected GI docs that specialize in motility. The main guy was the one that was the MOST unhelpful. Wonderful, huh? In my experience though, sometimes the docs with the least experience are the ones that can help the most. Because they aren't arrogant and are willing to think outside the box. So maybe this other doc, who doesn't specialize in motility, will have some ideas and be willing to work with us.

So we've had an eventful week. I started a new job (yay!). It's part-time, about 20 hours a week. I have to drive a ways, but the hours are good (mornings) and the pay is decent. And the job is very easy. I basically warm up food and serve it to little kids. It's a small kitchen, so I work alone, which is best for me. It irritates me when people get in my way. LOL We've had minimal nursing because our regular day-time nurse went on vacation. We knew well in advance she was leaving and I *thought* I had it all covered, until the agency told me they weren't going to let the other nurse work all the hours. And they can't be bothered to send out another nurse. Yeah, I'm dumping them as soon as I can. Long story short, they want our nurse for this OTHER case, their "big" case, I guess you could call it. The family has 11 adopted kids (most of them disabled) and many of them have nursing. If they lose that case, someone is getting fired, I'm sure, so they send all the nurses there first and leave the rest of us hanging. It's not like we have to WORK or anything! Grrr.... They didn't say it in so many words but the person I talked to got very defensive, which leads me to believe she knew what they were doing was wrong. Thankfully our nurse is great. She knows what it is like to be a single mom, so she said we'd work it out one way or another. Basically, she got there as late as possible so I could go to work and left ASAP when I got back. She worked like 30 hours. I'm not sure what she's getting paid for yet (maybe 24) but I owe her big time for bailing me out. Our day-time nurse will be back on wednesday so next week won't be so hectic.

On tuesday I asked my mom to watch Charlie so I could go clothes shopping for my new job and she accidentally yanked out her tube while I was gone. I walked her through putting in a replacement over the phone, which she handled beautifully. Then the next day we took her to Children's to get a new one in. I had to haul ass to get out of work early to get her there before the doctor who does the tubes left. But we made it. Unfortunately, he had to mess around a little more than normal to get it in just the right place, so her belly was hurting pretty badly. She didn't even handle Pedialyte at first. Then we got her handling that and she screamed when we tried diluted formula that night and the next day. We still have her on just Pedialyte today (saturday) but I'm going to try her on diluted formula this morning and see how that goes.

The doctor who did her tube was the same one who did her salivary gland ablation so I was able to talk to him about that. He's pleased with the results (just her peeing is reason to celebrate but he was thrilled to see her off the oxygen as well), but he's willing to do them again, one at a time, until we get the results we want. So we'll be trying again, and hopefully it won't be so bad, since he'll do just one at a time, not 5 like last time.

So I got brave and bought some yogurt to put in Charlie's tube. I never tried it before because she can't tolerate much of anything in her stomach. I thought dairy especially would be hard for her to digest. Plus, I thought I'd have to put a decent amount in there to get the effect of the probiotics in it. Well, I was wrong. I put just 5 mls of yogurt in her tube and not 2 hours later her breath was almost normal. It was RANK before. Very, very bad. So that's good. We're giving her 5 mls twice a day. We just have to leave her tube clamped for a couple of hours because it takes her so long just to get 5 mls through. But at least she's not barfing it. I'm surprised such a small amount can have such a huge effect on her. I wish I'd known sooner that such a small amount could help her. I don't know if it will help with any of her other GI problems, but I'm glad we solved the bad breath.

Pictures!

Showing off her mad kicking skillz.

And lifting her head just a little to see Grandma's Ipod.

Lots of great stuff going on!

2010-07-08T07:42:00.006-04:00

Charlie has had a very good couple of weeks. She's been off the oxygen mostly. Every few days she needs it for a few hours, but overall she's doing well without it. She's been *very* active. She's kicking her legs HARD! It's so great to see her really move. And she's having fun doing it too. She loves to kick in the water and kick her legs to music. And loves to kick me in the stomach when I'm laying next to her. And kick other people's legs when she's in the stroller. I have a very difficult time telling her not to do something when it's so hard for her to do anything, but I think I will have to teach her it's not nice to kick people. LOL

Speech came out and we worked with a communication switch. We'd tried before a little bit but couldn't get much of a response from her. We gave her two switches, one for "book" and one for "video". that didn't work because she just wanted to "play". But I found a motivator...candy! We took away one switch so she wouldn't be confused with choices and just tried to get her to understand the concept of hitting a switch and getting something in return. I made it say "I want candy" and held a Dum-Dum up in front of her. Worked like a charm. We showed her twice and she was off and running with it. She did it about 20 times on her own and was very sticky by the time we were done. They were absolutely thrilled that she picked up on it so quickly because it shows intelligence, understanding, ect. Well *I* could have told you that! She IS smart! We just have to keep her motivated. It's still just very, very hard for her to get her hand TO the switch. The distance and angle have to be just right and sometimes only one arm will cooperate with her, so working with two or more switches will probably be difficult. We're going to try different ones though. There are so many different kinds for all different abilities. I'd like to try head-tilt switches and the kind you put in your hand and squeeze. We could do one in each hand and then she wouldn't have to MOVE her arms, just give it a little pressure. Which brings me to my next topic...

We are trying to teach her left from right. And she seems to get it. It's hard to tell of course, because all of her limbs tend to move when she's trying to move just one of them, but the one she's trying to move always moves MORE than the other ones. So we're going to work on it. I think it will come in handy if we put a switch in each hand and we can tell her, "this one is in your right hand and this one is in your left hand". I'm sure it will come in handy for other things too but I haven't figured out what yet.

She's also been *attempting* to move her head around more. When she was in her chair while Speech was here, she dropped her head down to drool. Usually I help her back up (because she doesn't even care most of the time that she's cutting off her own airway) but I gave her a few minutes (and watched her closely to make sure she could breathe) and she did manage to get it back up! Not from midline, which is the hardest for her, but she rolled her head to the side, then pulled it back up that way. She did it one other time a couple of days later too. Now there were multiple times in between when she tried and tried and couldn't do it, but the fact that she's TRYING is huge!

We went to see fireworks over the weekend. It was WAY past Charlie's bedtime though, so I'm not sure how much she enjoyed them. We know she at least enjoyed spending time with her Grandma though.

Dressed up all cute to go out: "But mom I'm TIRED!"

Enjoying our garden in her own way. The squash is bumpy!

Last slot of her car seat. It seems like we just bought it!

She seems huge in it and she's only 18%ile for length. Long torso, short legs...the curse of my children and probably any future children as well. *sigh*

Sitting up in her stroller. Which she has never been able to do. Not at this angle anyway. She sat like that for about 3 minutes before falling over. And then, she thought it was so hilarious that she kept purposely flinging herself over and making us catch her. I think she can steady herself longer if she wanted to, but she has this fascination with being upside down...it doesn't help matters!

I'm going to try her car seat more upright rear-facing and see if she can handle it. I put her forward-facing (and fairly reclined) but that was because it is SO awkward getting her in and out and has led to bumped heads and one pulled tube. If I can put her rear-facing behind my seat, I think it will be fine (more upright she will fit, but at a 45 degree angle I would be sitting too close to the steering wheel to be safe). Don't ask why, but I cannot load and unload her from the passenger side. It's horribly awkward. I handle her better from the other side. Something about the way her spine curves I think, that makes it hard. Anyway I know I'm terribly indecisive. I still just don't like having her forward!

Haircut!

2010-06-24T16:21:00.003-04:00

I finally cut Charlie's hair! We just gave her bangs and evened out the back a bit. It's still past her shoulders. She's also getting some *beautiful* blond highlights in it as well (natural ones of course!). Her hair is still a bit wild. I'm hoping it eventually tames down a bit. She's cute no matter what just...it's really hard to control. LOL

And Charlie got to go swimming in the big pool! My mom has been bugging me for weeks to take her in. The pool was finally warm enough for her last Sunday. Here she is, getting ready to go in. I forgot to bring her bathing suit, not realizing we'd actually be taking her in! So she's just in a diaper cover.

"Yes I love it!"

I got a little bored one day and made her some bell socks. She thinks they're pretty neat!

So it's been like 3 weeks since her procedure. I'm a little sad to say that she did end up with a little more secretions. We still have to suction her pretty much all the time. She DOES have less though. It's just what she does have, she still has no clue what to do with it, so it all falls back in her airway. I'd still say there's a 50% decrease even though we still suction 20-30 times a day. She's peeing 5-6 times a day (up from 2-3). Her suction machine usually has 100-150 in it a day (vs 200-300). She's only wetting 2-3 rags a day (used to be 6-8).

SHE IS OFF THE OXYGEN!

Well, for the most part. She still has a bad day here and there, but she's breathing well enough that she can stay in the 90's most of the time. So the procedure was definitely still worth it. We go back in about 2 months to have an ultrasound done to see how everything healed up. If he sees her and thinks she's could benefit from a second go-around, I'd totally let them. If we could get another 25% reduction, it would be worth it.

In the meantime, I need to teach her to spit better so she can get it out herself and not let it fall in her airway as much. She's been pretty good about that, but I think since she has less to deal with now, she doesn't bother to spit it out. I don't think she cares if she has to be suctioned. We'll work on it anyway though.

We have a home visit from Help Me Grow tomorrow to decide what to do about preschool. She's almost 3 years old! My gut says to keep her home and just have them send a teacher out. But Charlie loves other kids soooo much! Too bad they have so many germs. LOL

Positive results!

2010-06-06T09:24:00.006-04:00

First of all, we are home! We got her back on the nasal cannula yesterday and she was doing well on 2L so we got the heck out of there! So that's her "going home" pic. She was kind of out of it. She's *really* exhausted (I would be too!).

Ok so positive result 1) She does have less secretions. I don't think we'll know what her baseline is until the swelling is completely down, but so far so good. She still gets rattly in her upper airway but it is NOTHING compared to before. She's not drooling everywhere and she doesn't have foamy saliva pouring out of her nose. She's not gagging and choking. She still coughs when it catches, but it's not an overwhelming amount and so she's not actually "choking" on it.

Positive result 2) She needs less oxygen already! How wonderful it would be to get her off this damn machine! I've just been spot checking her but she's doing wonderfully. I just turned her down to about 1 1/2 L this morning (it's hard to tell the exact setting on our machine) and she's still at 98-100 (she never stayed there before, even on 3L). I'm trying not to get overexcited and turn her down too quickly because that may backfire.

Positive result 3) I didn't even realize until now it was a problem, but her heart rate has gone down. I never considered it "high" before, but since she's not working as hard to breathe, she's leveling off at a more "normal" heart rate, which is about 15-25bpm lower than before. Sleeping she was at 90ish, now she's in the 60s and low 70s. Resting she's at around 100 to 110. Before she was 120-130. I can't wait to see what happens when she gets excited or gets a fever. Excited (or upset) she goes to 150-160 usually. Fever, she gets up to 180-190. So we'll see! I imagine it's better for her heart to not have to work so hard, even if it wasn't working "super" hard before.

Positve result 4) She's peeing again! Ok, so she peed before, but it was getting to the point where it was only 2-3 times a day. If we tried to give her extra fluid, she'd just have more secretions! I think we'll actually have to cut back on her fluid now! It's bountiful and almost completely clear. Compared to dark, smelly, and scant before. Proof positive that she's losing a LOT less fluids through her mouth.

So far there are no negatives. I could list the swelling, pain, and hospital stay as "negatives" but I just can't bring myself to do it. Those were expected (ok maybe we didn't expect such a *long* hospital stay) and you know, no pain, no gain! We were able to easily control the pain. The swelling was bad, but not bad enough that she needed intubated post-op. C-pap is not a huge deal. It was worth it. Totally.

It's still a new procedure and they still only do it at this hospital. The doctor who did it is very passionate about his work and is trying to get other hospitals to start doing it as well. I've been taking pics of Charlie's progress and making notes of every change. He wants to use our experience in his teaching. What an honor that would be if Charlie could help other children!

Botox doesn't work a lot of the time. It certainly did nothing for Charlie. Meds didn't work. The more invasive surgery is only supposed to remove 2 out of 6 glands (removing more would ruin the nerves you use to smile). THIS procedure worked. And worked well. I'm so happy I could cry! He said folks fly in from all over to have it done. If your kid needs it done...DO IT! Do it, do it, do it!

Oh wait, there's one negative result. I can't hear her breathing sometimes. LOL I FLEW out of bed this morning because I couldn't hear her. I always dread the day that it might mean she's actually STOPPED breathing, but that day wasn't today. She was awake, but breathing SO quietly. I turned on her pulse-ox and she was 100. That's going to take some getting used to. :-)

Update!

2010-06-04T09:32:00.005-04:00

We went in on wednesday like planned and the procedure itself was pretty uneventful. The doctor was able to get to all the glands he needed to and no nerves or anything got in the way. Afterwards though, Charlie didn't do so hot. They had to work pretty hard to keep from re-venting her. They had her on cpap and had to hold her head back and keep her jaw open and had one person just assigned to suctioning. But she did better after an hour or so. It's hmmm...40 hours later now and she's STILL on cpap. She's really swollen so I don't think she'll be able to come off until the swelling goes down. We tried once yesterday and within 30 seconds she was struggling. So she already seems to have a lot less secretions, but I'm still not getting my hopes up. We won't know until after she's off cpap and the swelling is down just how much effect the procedure had.

They are giving her steroids to help with the swelling and she's doing well with just her regular pain medication schedule. She had quite a bit of pain a few hours after the procedure, when her first dose of meds wore off. But once her bedtime meds were in her, she was fine. Scared the nurses a little though, because she was all over the place with her breathing and sats. It was a little worse than normal, but I chalked it up to her being SO exhausted (and I've seen worse). They turned her settings up and she was fine. Low, but fine. It was kind of funny...they were all rushing around, freaking out and I kept telling them it was fine. One other nurse walked in and I'm just sitting on the couch copying recipes from a magazine into my notebook and she looked around and said to me, "Well, I'm assuming from how relaxed you are that this is pretty normal for her." I was like "yup". And then she said, "well it's either that or you just don't care...but I don't think that's it." I think that was a foot in mouth moment for her because she seemed embarrased that she said it. The first statement was plenty enough to convey her thoughts. LOL

Anyway, here's a pic of her waiting to go in:

And after...poor baby!:

I'll update more later of course, with more pics as the swelling goes down and how she's doing with her secretions.

More on the procedure...

2010-05-26T12:56:00.004-04:00

They decided they don't want to do it outpatient. It's going to be at least a 1 night stay. Now I'm a little more worried. The more info I give them about her condition, the more they act concerned. I think they think she won't handle it all that well. They mostly do this procedure on kids like Charlie, but one lady I talked to referred to it as a "drooling problem" (I quickly corrected her) so maybe the kids they are used to aren't as bad as Charlie. She hardly has a "drooling problem". If it was JUST drool, I'd never consider a medical procedure like this. Just stick a bib on the kid ya know?

So have they done this on a very severe kid or not!?

I'm doing it, regardless. Even if they haven't done THIS procedure on a kid like Charlie, the anesthesiologist most certainly has experience with kids like her, and structurally, nothing is different with her glands so the doctor shouldn't have any problem there. It's just putting her under that has them being extra cautious.

Nothing like calling me up and telling me we have to stay at least one night "because of her condition" to freak me out and make me even more nervous. Yeah, thanks.

Clarification...

2010-05-24T10:56:00.002-04:00

I received a comment asking why I don't talk about my husband. While I feel the comment was inappropriate and odd, I also realize it may be confusing especially to long time readers who knew I once had one, so I'm going to clarify. I won't go into details, so if you are that nosy...don't even bother asking. I left Adrian and Charlie's dad in September of 2008 for many, many reasons. Our home life is much happier and stable now and we are all doing wonderfully. And no, I'm not available. ;-)

I'm nervous!

2010-05-21T08:22:00.004-04:00

I scheduled the procedure to kill her salivary glands. I can't remember what they called it. Anyway, we're doing it on June 2nd. So soon!

I'm mainly nervous about:

1) Intubating her. I'd like to think my kid will be as stubborn about breathing on her own as she is about everything else, but there's still the possibility that she won't want to come off the vent. Her pulm doc said when kids like her have been working so hard to breathe for so long, they get tired, and when a machine takes over, they sometimes give up and let it do all the work. It's by no means super common, but definitely a possibility. That scares me. I don't want to have to make the decision to take her off the vent or put in a trach.

2) That she'll be in pain. They said it's not very painful and only like the first 2 days are the worst. We'll have access to good meds, but it's still enough to freak me out.

3) That it won't work. I know, that's not the worst thing. We'd just be where we are right now, suctioning 40-50 times a day and having a child that spends all her waking hours gagging, choking, and coughing in between smiling, laughing, and squealing.

There are other worries, but not necessarily stuff that freaks me out. Like the fact that they are putting her under to do this. What if she doesn't handle that well? Should I revise her DNR to include situations that might happen while she's under? I don't want her recusitated if she's crashing, but what if her heart rate is just hanging at 40-50 and some light compressions for a few minutes helps her handle it better? That's a GOOD thing right? And they said they do this in radiology to prevent hitting important nerves. Apparently it is a very low risk, but they could nick a nerve that would mess with her face muscles...like the ones that she uses to smile. Low, low, low risk, but still there. Chances are if they DID nick an important nerve, the wouldn't do it to both sides so worse case scenario is she'd have a cute, crooked smile right?

But I'm not hesitating on this one like I did with the botox. We HAVE to do SOMETHING because she's getting worse and it IS affecting her quality of life. And this does sound more promising than the botox. I never did understand how the botox was supposed to work. You inject stuff in there that does....what? Paralyzes the glands? Or tries to? I don't know. It didn't work. This procedure, they are actually going to kill the tissue. It sounds much more effective and permanent. But I still don't want to get my hopes up. Our only option after this is true surgery, when they actually go in and mess with stuff. And it's brutal and painful and she'd be inpatient for a while. With the radiology procedure, as long as everything goes ok with the anesthesia, we'll be going home the same day (I'll have a bag packed and in the car just in case).

And just because I hate to do a post with no pictures:

I'm being generous by putting this up simply because I LOVE how happy Charlie looks in this picture. So be equally generous and ignore my unwashed hair please. :-D

And because I haven't posted one of Adrian in forever and I've *seriously* slacked on his blog:

One piece outfits!

2010-05-19T12:46:00.006-04:00

So Charlie has outgrown all her one piece outfits. Most brands only go to 24 months or 2T. Gymboree and Land's End used to have bigger onesies and rompers, but quit carrying them. I've found some on a site based in England, but they were a little pricey and I don't even want to know how much shipping would be. So I've been on the look out for one piece outfits. I should probably explain why huh? Because Charlie doesn't sit or stand, her clothes all tend to ride up so her belly and back show. It looks uncomfortable and I don't want my 2 year old's belly hanging out! One pieces are just so much more practical for her.

So in the last post, I showed off one romper I made for her out of a t-shirt. It's ok, but there were a lot of things I didn't like about it. I didn't proportion it quite right and it looks a little funny. I'm getting better at it though.

Here's one I found at wal-mart, on clearance (I bought 2 different ones). It's nice, but there are no snaps at the crotch. I can add snaps, but I'm not sure how well that would work and still make it look decent. They are easy enough to pull up and down and since my kid only pees like twice a day, it'll work. Still, I don't love that it's sleeveless and $5 an outfit is a little much for me. I just don't spend that much on clothes. We tend to buy secondhand mostly.

Charlie's nurse brought over some of her daughter's outgrown clothes and I made onesies! and they aren't "babyish" either, which is great. I found 4T gerber onesies on amazon, but they still had the baby designs on them. So here's my little tutorial:

Pick a shirt that is several sizes too big, but not terribly wide, and nice and long (a challenge in itself with the too-short styles for girls these days):

Mark off where you want to cut, fold the shirt in half so it ends up even, and just go for it:

Use fold over elastic to bind the edges all around:

Add snaps and you are done!

Now I've learned a couple of things. 1) You can cut out the neckline and add FOE to that as well, to make it smaller. 2) You can add FOE to the arms too. This makes for a very girly "ruffled" look. And 3) The bottoms want to flare out! You can pull the elastic around the hips to bring it in a bit and you have this:

Cute huh?

I made 2 more rompers out of juniors sized shirts...a hand me down....

And Twilight! I know, I'm the biggest dork evah!

I loved the way this shirt looked and didn't want to turn it into a onesie. Instead I just fixed the neckline up so it fit her. It's long enough that it can ride up a little and still be fine. It looks adorable with leggings!

And last but not least, I won an ebay auction for $11, including shipping for 5 Lands End rompers in 4T! Here. One one hand, I can't believe I didn't have to fight anyone over those. They are hard to come by and for such a good price! But on the other hand, lots of people don't like that style. It's out of date and the newest thing is to dress toddlers like little adults, which is a whole other post for me. I want outfits that don't that show my child's diaper and belly, thank you very much!

So there you have it...a summer wardrobe for less than $25 (her shorts and skirts from last year still fit)!

Changes...

2010-04-30T22:53:00.004-04:00

So I got super motivated yesterday and decided on a whim to rearrange the whole house. We have a small 2 bedroom townhouse. The first floor has a living room, a small kitchen, a small bedroom, and a half bath. The upstairs has a large bedroom, a full bath, and a large laundry room. When we first moved in, I put Charlie in the bedroom downstairs. But it was crowded with all her stuff! Then I moved her out to the living room and gave Adrian the bedroom. I thought he needed his own space. It was okay for a while, but Adrian really could care less about having his own room and I was feeling claustrophobic in my living room. And Adrian's room was a tight fit too, because I had to move the futon in there to make room for Charlie's stuff in the living room! Argh!

It never occurred to me to put Charlie upstairs in the big bedroom. I mean, why would you put a non-mobile kid with lots of equipment up a flight of stairs? But I did just that yesterday. And I really, really like it. We had to take her upstairs everyday to bathe her. Now we just have to take her DOWNstairs to go outside or whatever. No big deal. So I worked my ass off and got 90% of it done in two days with no nurse. Why is it that I'm practically superhuman sometimes and barely manage to roll out of bed other times? Anyway, pics!

I like this setup better because 1) I don't have to reach around her big dresser to reach her head. We'd been scooching her down in her crib so we could reach her properly, but she's gotten so long that her feet were hitting the foot of the crib. This solved that problem. And 2) This desk is much better for holding her stuff than the nightstand we were using previously. And I like that I can shove all the cords underneath the desk too. It even has a little ledge underneath for her vest system!

That blue rocking chair was a bitch to haul up the stairs! I got a nice workout though. And I put a basket of toys and books within reach of the chair. And those are her "dressers". The big one is two of them stacked and taped together so they are less likely to topple. Yeah...

The TV didn't fit on the nightstand and I didn't know it until after I'd already decided I didn't want to use it for her equipment anymore. So I made it work. That's the top of a kiddie table holding it up. Thankfully Adrian is old enough to know not to climb on stuff.

I cleaned out the laundry room (it was a wreck) and used one side for the kids. Those are toys lining the wall. Think we need to purge just a little? And I hung up their clothes.

I went through Charlie's supplies. Oh, what a disaster! They were stashed in every closet in the house and so disorganized. I sorted everything and labeled it and it's all in one place (well aside from what's out for everyday, easy access). This is the other side of the laundry room. Thank goodness we don't have a washer and dryer huh? So that's random crap piled up to the shelf. And her nice, neat, organized supplies up top. And yes, we really do have 4 full boxes of suction catheters and 6 full boxes of farell bags, for those of you who recognize them. That's what happens when you lose track of what you have.

I even organized her meds and formula downstairs. I cleared off the counter beside the fridge and put everything there. It had all been on a microwave stand before and syringes kept rolling off and hiding behind the trash can. So, no more of that! Now the stand is covered in potted plants! My garden is taking off but I wanted some indoor ones just in case the stray cat who's been digging in my garden decides to destroy it. I'll do a separate post for my garden later. I'm so excited! It's twice as big as last year.

Now all I have to do is move the futon back out to the living room and switch me and Adrian's beds. Oh, and clean and vacuum. *sigh* It seems like a lot, but like I said, I already did like 90% of it. Let's just hope I get another spurt of energy in the next few days.

Charlie was very happy once I got the TV upstairs. The bean bag chair is so great for her to lounge in:

The Donkey Kong romper I made her, from an old t-shirt:

I had her laying on my chest and she kept rolling backwards to hang upside down. What 2 year old doesn't love a head rush?:

The little things...

2010-04-23T13:27:00.004-04:00

Charlie is so different than most kids but occasionally I'm reminded of how normal of a kid she really is. Sure she can't do the usual things, but in her head she's just a normal kid. So here's a few light-hearted stories:

We've played pat-a-cake with Charlie ever since she was itty bitty. She's always loved it, although her enthusiasm has waned as she's gotten older. Which is totally expected of course. She rediscovered her love of pat-a-cake a few weeks ago when her grandma was playing it with her and she learned to throw her arms apart at the "throw it in the oven" part. Now that's her favorite part and she's not bored with the game anymore.

The other night Charlie woke up 2 hours after I put her to bed and I couldn't seem to get her settled down. She wasn't crying, but she was uncomfy for some reason. I took her from the dimly lit living room to upstairs to my bedroom where the light was still on and very bright in comparison. I laid her on the bed and had to go back downstairs to get the rest of her stuff. When I came back upstairs, she had thrown her arm up over her face to shield her eyes. When she heard me, she lifted up her arm, looked at me, sighed loudly, then dropped it back down. She did this like 3 times and I finally I turned the light off and she let her arm drop for good. Little stinker!

Charlie has had a strong suck reflex since she was about 3 weeks old. She got her suck reflex back at that point and just never quit. We never could give her a pacifier because she would desat, but she would just make sucking motions with her mouth. We've had many doctors comment on it, thinking it's seizure related (lip smacking) but nope...just a comfort thing. She mostly does it when she's asleep or tired. Last week she was having an off night (she's having more of those lately, unfortunately) so I took her out of her crib and sat with her in the rocking chair. She kept fussing. Not a full-blown cry, but she was obviously having issues. Sometimes I think her reflux wakes her up and she's just mad that she's not asleep anymore. Anyway, I sang and rocked and sang and rocked. She just kept making this pitiful whining noise over and over. I noticed that her tongue looked dry so I used my finger to stick it back in her mouth and get it a little wet again. Well she started sucking on my finger and went right to sleep! She sucked for like 10 minutes until I felt she was out enough that I could put her down. I was still nursing Adrian when he was 2 1/2 and at that age, he didn't need to nurse much, but bedtime was necessary. I never think of Charlie as a nursing child for obvious reasons, but she still has the same basic needs as other children, even if they are a bit different. Some kids don't need to suck much after infancy. Others are very orally fixated and need that comfort much longer. Adrian was that way and it looks like Charlie is that way too. I never think of it as the same thing though because she's never relied on ME for that comfort. She just sucks on her own tongue. It was nice for her to need me, even for just 10 minutes. :-)

And an unrelated pic, just because I hate to do picture-less posts:

I wonder if her hair will EVER act normal? LOL

Hospital pics...

2010-04-17T12:28:00.002-04:00

They got nifty new pull out chairs (still not very comfy though):

I had Charlie's car seat upstairs because I didn't have my car with me and didn't know who would be picking us up. It came in handy after about the second day. She was getting restless and bored. I put her up in the car seat (attached to her stroller) and aimed her at the TV. She was quite happy. And she had a new baby doll my mom got her from the gift shop:

And asleep in my arms....awwww!:

Huh...

2010-04-16T22:49:00.004-04:00

We took Charlie home last night. And she was doing pretty well and we were super hungry, so we stopped at Tumbleweed to eat. There was about a 15 minute wait and it was nice out so we sat outside. Ian went to find out what happened to his buddy's music store that closed down and they called us right then, of course. The hostess waited patiently while I suctioned Charlie and waited for Ian to get back. She asked me how old she was, what her name was, and of course, in a very polite way, asked me about her condition. When people are polite and genuinely curious, I'll answer every question they have and ramble on and on about things. I'm proud of my kid and all she deals with. And I brag to anyone who will listen. She asked if I knew before she was born if she'd have CP and I said, "Oh, no, usually this type of thing doesn't happen until the birth." And I realize then that this poor girl is about 6-7 month pregnant. Whoops.

Her eyes got really wide and I explained that Charlie didn't show any signs of distress and we didn't know there was any indication for a c-section and usually they can do a c-section and try to get the baby out in time. I'm rambling, trying to figure out how to ease this lady's fears. I know I scared her. But at the same time, shouldn't all women know this is a possibility when they have a baby? A healthy dose of fear can be a good thing. You can have all the prenatal testing known to man done with the intention to abort if they find something wrong, but that doesn't guarantee a healthy baby. Hell, you can have a healthy baby and later almost lose them to a vaccine reaction or choking on a cracker (yes, both of these things have happened to real people) and wind up with a permanently disabled child. There's no guarantees. And so I just kept rambling. Yeah, she's probably all freaked out now. I feel a little bad, but maybe she'll also see that disabled or not, kids are wonderful and will warmly welcome whatever type of baby she gets.

And if you are pregnant and talk to me about my kid, I might not take your feelings into consideration while telling our story. It's nothing personal, honestly. I'm so immune to the feelings that most people feel when discussing this topic, that I say some of the most blunt, insensitive things without thinking. It's just so ....*normal* for me. I forget that such serious medical problems and disabilities are unnerving to other people.

Hospital update...

2010-04-14T23:11:00.004-04:00

Things were pretty uneventful until yesterday at about 6pm. That's when I saw Charlie's body arch clear off the bed. She was retching something fierce and she puked bile and blood. She had a farrell bag on and it was draining nicely so I don't know how why she threw up. We got her settled down and stopped her feeds and the nurses gave her a bath. She did it again. This time she desatted pretty badly during and afterwards so we turned up her oxygen. She still wasn't doing well so the doc came in. Charlie retched again, just for her. LOL She sent us down for new xrays to check tube placement and her lungs. Tube was fine. Lungs...not so much. She has a new spot on her left lung (previous spot was on her right lung). It takes only seconds for a kid to aspirate and cause damage ya know? She spiked a temp and went tachycardic on us, but with that many antibiotics in her system it didn't get too bad.

This morning her pulm doc said to stop the IV antibiotics and he put her on two less aggressive ones through her tube and one aerosol one (that won't bother her belly). He thinks the antibiotics were just too hard on her. And we restarted her feeds at 15 mls an hour. Later I noticed her right hand (IV is in her right arm) was pretty swollen so I asked the doctor about it and she said we could increase her feeds and stop her fluids but we're going to leave the IV until we know she won't need it anymore. So she's almost at full feeds and doing pretty well. We're hoping to leave tomorrow sometime.

There's a fine line between ignoring illnesses and using so many antibiotics. Obviously too many are bad. And Charlie is sensitive anyway. And her gut doesn't function all that well. It's not easy thinking that the best thing might be to NOT treat her aggressively. But I think we did make a mistake this time and we learned our lesson. She was miserable and we pretty much just made things worse. I mean, who would think treating a respiratory infection could lead to an almost-aspiration pneumonia?

Hospital stay...

2010-04-11T22:05:00.002-04:00

Charlie has had some crappy respiratory stuff going on for a couple of months now. She has good days and bad days. We've done some antibiotics, but it just won't clear up. I talked to her pulm doc and we agreed to admit her and try IV antibiotics and decide what to do if this ends up being a chronic problem, which I suspect it will be. The spot on her right lung is STILL there. And it looks bigger. Wonderful. :-/ So he's going to review a few of her past x-rays and go from there. All of her bloodwork and sputem samples and everything came back clear so it's possible it's just HER. Her lungs being crappy. And so that's where the "long-term plan" comes in. Do we admit her each time she gets bad or do we just relax and realize there's not a whole lot we can do? Funny, people keep asking us about a trach but these are the exact problems she'd have WITH a trach. A trach will protect her airway, but it won't protect her lungs.

So we've been here since Saturday afternoon. It will probably be a couple of days before we go home.

Lots of stuff...

2010-04-05T10:52:00.005-04:00

One of Charlie's nurses has been braiding her hair every day. This is what it looks like when I take it out. 80's chick! Complete with ear buds for her tunes. LOL

Easter sunday. What's so interesting?

A giant dog! Marmaduke is a 1 year old great dane. Charlie loved him.

We got The Vest System for Charlie. It basically jiggles the crap out of her lungs. Here's the vest that straps to her:

And the machine:

And an action shot:

She thinks it's pretty cool. She smiles and squeals when we first put it on, but then just relaxes and enjoys it. We can't tell yet if it's making a difference. Funny though, how medicaid fights us on a $150 antibiotic, but hands over a $14,000 machine they don't even know will help or not. Weirdos.

So other stuff:

We're pretty sure we're going to take her in to have another procedure done to try and control her secretions. It's NOT the surgery I mentioned before. The take her into radiology and inject stuff into her salivary glands to basically kill the tissue. We all have 3 pairs of salivary glands. 6 total. Usually for this procedure they do 3 of the 6. Charlie is a super saliva producer though and since she really can't handle her secretions at all, they are going to kill 5 of the 6. *gulp* It sounds scary, but they say it's tons more effective than Botox. Only it's a relatively new procedure. They've only been doing it 2 years. Charlie will basically be a guinea pig, but I don't see any other option. She's getting WORSE and we need to do something to make her more comfortable. I'm only nervous because they WILL have to put her under and intubate her. We cannot get around it like we did with the Botox. But they say it's not very painful. She'll be swollen for a few days though. That will be next month or maybe early June.

Charlie's head grew! Ok, so I know it doesn't mean much, I was just taken by surprise. I used to agonize over her lack of head growth. I watched her fall further and further below the charts, knowing what it meant....her brain doesn't grow. In fact, it's atrophied quite a bit. So I quit measuring it. I never asked when they did it at the doctor's office. I figured it just doesn't matter. But the other day I had my tape measure out (for me....I've lost 15 lbs!) and I got curious. Her head grew almost an inch! Since....oh I don't know, maybe 6 months ago? I know it's still way small. But it was a nice surprise anyway.

Charlie found her legs. She LOVES to kick! And she's getting pretty good at it. We took her kick'n'play piano that was strapped to her crib, up by her torso so she could reach it with her hands, which she was never very good at, and put it at the foot of her crib. And she kicks it! Just like kids are supposed to!

She's learning to make a "g" sound, as in "good". She sort of did it on accident at first but we've been working on it and I think she can do it on purpose now, at least sometimes. She makes the sound at the end of her "ehhhhs". "Ehhhh...G". So that's exciting. Not that I expect her to just start talking, but if she even has just a few different sounds, maybe she can use the differences to communicate in her own way.

She's attempting to hold her head up more. Don't get me wrong, she still SUPER floppy. But she's trying. I've caught her holding it up herself for several seconds about a dozen times in the last couple of weeks.

A cute conversation between her and her nurse (D) yesterday:

D: Hey Charlie, what's your favorite color? Do you like red?
C: Ehhhh!
D: Do you like blue?
C: Ehhhh!
D: Do you like yellow?
C: (silence)
D: Ok, not so much for yellow huh? What about pink?
C: Ehhhh!
D: What about purple?
C: (silence)
D: No purple huh? What about green?
C: Ehhhh!

She knows what she likes. :-D Funny, I thought she would have liked purple since Barney is purple. I figured that's why she liked Elmo, because he's a nice, bright color. Or maybe she really does love them for their qualities and not just because they are easy to see. Of course, we don't actually know how severely her vision is impaired. Maybe not as much as we think.

Relax, she's alright!

2010-03-16T07:32:00.005-04:00

And of course, I'm sorry for not updating sooner. We took her for a barium enema last monday and they didn't find anything. At all. Which was weird because I KNOW what I saw. Then I thought about it. Long and hard about it. She'd had a huge poop that morning. Like, really huge. Of course I always clean her out. But what if (now tell me if I'm just crazy) some of that poop had actually been pushed further up than what I could see? I mean, when us ladies get in the water or whatever, some can get up in there. And a snug diaper could push things up right? And it could get so far up there that it didn't come back out for 5 hours? Does that sound like it could happen?

The doctor doing the enema said that he sees it fairly often...parents bring a baby girl in because they are sure it's coming from there. But they don't find anything. What happened? He couldn't tell me. He did say that occasionally they find a fistula, but it's very rare. Usually it's nothing. Maybe this is something they should warn you about when you have a baby girl. "By the way, poop can get way, way up there and if it comes out hours later it's probably NOT a fistula. Take her in to find out anyway, but don't FREAK OUT because she's likely fine." Why doesn't What to expect the First year/Toddler years say THAT!?

So then on thursday the balloon on her tube popped and it fell out so we had to go BACK to radiology and get it replaced. Same doctor. He was a really nice guy. He had her tube all the way in (which takes a little while and some work) and he got kind of iffy and asked his assistant if he thought maybe she needed a longer tube. They agreed she did so they took it out and put in a longer one. He said her's was *barely* long enough and might cause feeding problems. We were hoping that might be one reason she was screaming but the longer one hasn't helped. Oh well. At least now she has an appropriate length tube. She also got a shorter button to balloon length too. The length between the button and the balloon is determined by how much skin and fat and stuff is between them. When she was super chubby, she had a 2.0. When she slimmed down, she got a 1.7. She slimmed down even more (even though she's the biggest she's been in 6 months) and so she got a 1.5. Old tube: 16fr 1.7 24cm New tube: 16 fr 1.5 30cm.

On our way to get the tube change. She was so excited to be in the car, she moved her head around to look out the window (usually it falls down and to the left).

First walk of spring! Well not really spring, because it got COLD again, but it was nice for a few days and we enjoyed the weather.

Ack! somebody put my shades on! The sun, it burns!

Mesmerized by Barney. "Ooooh Barney....so...purple...so...hyper..."

Yes, Barney is her new fave. Forget Elmo. Barney is where it's at! When I walked in the room to take a pic, she didn't even blink or look at me when I turned on the light, snapped a pic, walked on the other side to snap a pic, or walked in front of the tv to get across the room. She just STARED. At Barney. She acts like such a typical 2 year old sometimes it amazes me. I wonder who her next crush will be? Hmmm...

Oh and we have one Barney tape where they sing a song about flying in an airplane and when they put their arms up to "fly" she does too. It's really cute!

Crazy stuff...

2010-03-02T09:11:00.004-05:00

Sorry it's been so long since I updated. I think I mentioned that Charlie has been having more pain. We treated her with tobramycin again. She got a little better again and then she got worse again. Sunday afternoon her nurse called me into the living room and said "you have to see this". She has Charlie's diaper half off and points....there's poop all up in her vagina and none around her bottom. None. At all. It took me a full 2 minutes to process what I was seeing. She has poop coming from her vagina. *begin freak out*

So I called palliative care first and they called the doc, who said to go ahead and bring her into the ER because they were worried about the risk of infection. I decided to wait until monday morning because they generally don't get anything done at the hospital on the weekend. I know the signs of infection and was just going to watch and take her in that night if I needed. So I took her in first thing in the morning. We sat in the ER for several hours. 2 doctors examined her. One doctor was condescending and rude when I told him I wanted to keep the internal examinations to a minimum. Do they not understand why I don't want people poking around in my 2 year old's vagina when one doctor has already examined her down there?

Well, they sent us home. With instructions to follow up with her pedi who will "probably order a barium enema". Why didn't THEY just order it!? Children's hospital...supposed to be one of the best in the country...passing the bill off to a little pediatrician in Pataskala who has no real pull to get these things done in a timely matter. I tell them that Charlie has been having unexplained pain...if there's ANY chance this is related I want to get this figured out and handled ASAP. Is that really too much to ask?

I still think they don't bother or try very hard because of her condition. If my healthy 5 year old had poop coming from is penis, I think they would be running every test known to man that day. Of course I can't say that for sure. That's just my gut feeling. Mainly based on the way we've been treated in the past. Like when she was convulsing uncontrollably for seemingly no reason. They didn't care. They didn't have answers. They didn't run tests other than the EEG, which came back clear so they just shrugged their shoulders at us. If Adrian was convulsing uncontrollably, they'd be looking for a reason, because he's worth saving. Charlie has a brain damage so what does it matter if they can't save her or help her?

If anyone from Palliative Care is reading this, please reassure me that the hospital is sucky in general, and they don't do this just because she is disabled. It might make me feel better. Or if they are doing it because she's disabled, be honest, but agree with me that they are douchebags. Please? I just feel like I need someone on my side at this point.

2010-02-09T12:43:00.002-05:00

Another silly sleep picture:

Well we sent in another sputum sample and it came back + for pseudomonas AGAIN! I think she'll probably just have it chronically. So we're waiting on the doctor to call us back with instructions.

She's started having stomach pain again so we're going to get her tube changed and probably try something like Elavil. I don't want to wait until she gets as bad as she did last time.

Pics and the Most Awesome Story Ever!

2010-02-04T23:15:00.003-05:00

First, just some pics...

Charlie in her chair. Nothing special, but you can see how much she's grown.

So tired!

Lifting her head! Just the tiniest bit, but awesome for her!

And now for the Most Awesome Story Ever. At least I think so.

We give Charlie tastes of almost everything we can. If it's liquid or creamy or just a bit salty...basically anything we can suction back out...we let her try some. So no crumbly stuff like cookies. This leaves lots of drinks and candy. Anytime she sees us with candy or pop she wants it. Every time! She says, "Ughhh, ughhh!" And we give her taste. Because we love spoiling her. ;-) Well, tonight, her nurse was letting her suck on one of those orange wedges except they were flavored and the one she had was red. Charlie kept wanting more and more. But finally, her nurse put her back in her crib and put her on her side. She came back and found that Charlie had leaned over and started sucking on Rudolph's nose!!! We can only imagine that she thought it was candy. This child has NO desire to put toys in her mouth at all. She doesn't put her hands in her mouth. When WE get in her mouth for any reason, she bites us. Hard. But here she is, going to town on his nose. She was kind of licking/sucking on it.

Who's out there?

2010-01-30T16:50:00.001-05:00

I'm very curious about all of you that read Charlie's blog. I know she has some "fans" and a few people who leave comments regularly. What about the rest of you? I'm a member at a few message boards and several times a month I get PMs from people saying they love our blog and read it all the time. Sometimes I'll mention something about Charlie in a post and someone will say, "You're Charlie's mom!? I'm a huge fan!". I'm usually not aware that these people are readers so it always makes my day to know that Charlie's story is reaching people besides my closest friends and family.

If you read, even if only occasionally, would you mind leaving a comment telling me who you are and how you found our blog? Pretty please? :-D I'd love to get to know some of the "regulars" around here.

Lots of pics!

2010-01-29T20:44:00.007-05:00

We got a new shower head so we can finally put Charlie in her bath chair and quit stuffing her in the kitchen sink!

Needless to say, she loves it!!!

Some more fun with Adrian's abacus.

It was so funny today...I had her G tube open onto a rag (we do this to vent her and the rag catches anything that seeps out) and she kept trying to grab her tube. I never tell Charlie "no" to anything...I don't have to! But I didn't really want her sticking her hand into her own stomach contents, so I told her "No, Charlie, that's yucky, don't try to get that". Well she grinned at me and went for it again! And I told her again. And she grinned again and kept trying to get it. We did this 4 times. Finally I figured if she wanted it that bad, she could have it. I closed her tube and tossed the rag in the laundry. She went right for it again, though I didn't notice the whole time she was going for her J tube, not her G. She likes the red tip on it. Well she actually managed to slip her fingers under it and she played with it for 10 minutes before she dropped it. I helped her grab it again and she played for a total of an hour! I think she was just so fascinated, not with the tube itself, but that she had some control over it!

Action shot. :-)

Adding bells made it that much more fun.

And she also learned how to spin the globe!

Charlie's Christmas present...

2010-01-25T13:19:00.003-05:00

I finally remembered to take a pic of it! I made her a wall hanging from the pictures in her favorite book. I got the idea for it months before Christmas but then didn't get around to actually making it until like the 22nd. Thankfully my mom helped because I would have been SOL. I didn't even know how to touch up the images so they looked good when I printed them on the transfer. LOL I ironed them onto squares of material (from an old sheet), pieced them together, sewed on the ribbon, then added a back (random jungle animal material I had lying around) and loops to secure it to the side of her crib (which I need to redo because I got a little over-zealous with the snap press :-/). My mom had tons of the transfers she got for free. So the total cost was $0!

Update on botox...

2010-01-24T16:50:00.001-05:00

Well it's day 6 and so far...nothing. :-( We're suctioning her just as much and she's drooling just as much. You'd think it would help a *little* at least. Boo.

We may or may not discuss the much more invasive and painful route of surgery to seal off the glands. On one hand, she's used to the suctioning and it doesn't seem to bother her and the surgery is brutal. On the other, maybe she'll aspirate less and get sick less if she has less secretions, even if we have to put her through some pain to get there.

I hate decisions.

Botox...

2010-01-20T11:01:00.002-05:00

Well I finally broke down and we did the botox in her salivary glands. I wasn't thrilled about having to put her under and intubate her, but it seemed like our only way, so I tried not to think about all the "what-ifs", especially "what if she won't come off the vent?"

So we took her on monday and she was so thrilled to get out of the house and into the car:

Isn't that the best smile EVER?

We had to wait a while but she was happy the whole time and even napped a little.

Then the anesthesiologist came in and said her pulmo doctor wrote him a letter that said to please, PLEASE try to do it without intubating her because it truly was a concern, not just something we made up in our heads to freak out over. LOL Ok, he didn't quite put it like that, but it was nice to have a doctor say it so I didn't look crazy. So he agreed to not put her completely out and try to do it without intubating. Yay!

They were able to do it and she didn't react at all to the gas stuff they gave her so she woke up right away and was acting pretty normal, all things considered:

It took her a little while to get back to her usual smiley self, but at least she wasn't upset.

It's supposed to take 3-5 days to notice a decrease in her secretions, but her nurse swears she has less already. It's hard to tell because it could just be a coincidence that she had a good day right after the procedure. We will see. I'm hoping it helps even a little because this poor kid is constantly choking these days unless we position her "just right". And Charlie doesn't always like to be positioned "just right". She likes to be able to look around and see everything. LOL She'd rather be suctioned constantly than to miss out on her surroundings and let her secretions drain.

2010-01-11T08:30:00.004-05:00

Charlie is sick again. :-( I think it was just a cold and she started to get better. Then, just when you think you are in the clear, she spikes a temp and starts coughing up junk, so it may be settling in her lungs...again. So I'll probably call for antibiotics today. I wish we just had a standing order to use as needed. We never even take her in when this happens, the doctor just trusts that we know what we're talking about. They have no way of actually diagnosing her anyway. They just look her over. Fever? Check. Low sats? Check. Gunky lung secretions? Check. Following a minor illness? Check. Always, always, always how it happens.

But she's still doing well on her feeds. We still haven't weighed her but she's filling out a little. Here's a full-body shot, you can see her thighs have a little meat on them:

Feeling a little better yesterday:

BTW, we got a new camera, that's why the first two pictures look so much more awesome than normal. I'll be so glad to not have to take pics with my cell phone anymore!

New car seat pic, all bundled up:

And why she's bundled up.

Charlie had a lot of fun with Adrian's abacus. She moves her hand up and down and spins and clinks the beads. :-)

Long overdue post....

2009-12-30T18:10:00.004-05:00

Sorry, I normally don't wait so long to update unless things aren't going well, but this time the delay was just from the holidays. :-) Charlie is actually doing REALLY well now. We switched around a couple of meds and decreased another and I don't know if it helped or was just a coincidence, but she no longer seems to be in pain at ALL and we're packing almost double the calories in her every day. We think she's gaining but haven't weighed her yet. I read about a condition that could explain everything wrong with her (well, that GI problem specifically anyway). It can be brought on by a stressful situation (including physical ones, like illnesses) and can be treated sometimes successfully with meds and sometimes it goes away on it's own. Sometimes it does require IV feeds though. She has no diagnosis so far, but I'll be bringing it up next time we see the doctor, for no other reason then if it happens again, we'll be able to treat her better (hopefully). Some of the meds used to treat it were ones we were discussing anyway before she started to get better.

We had a nice xmas. I made all the gifts again. Adrian got felt food:

I worked on it for months before xmas. I was a little worried because I thought maybe he was getting too old for play food, but he LOVES it. He plays with it for an hour at a time every day he's with me. I packed it up with picnic supplies: a red, checkered blanket with matching cloth napkins, two sets of dishware and utensils, and a basket. He has everything he needs for breakfast, lunch, dinner and snacks. :-)

Charlie got monkey finger puppets so we can act out "5 Little Monkeys Jumping on the Bed":

I need to get more pictures, but I also made them each pajamas, a hat, puppets, and Charlie also got a wall hanging I made using pictures from her favorite book. That was her "big" gift from me. It was a LOT of work!

Charlie chilling on the presents.

Hanging out with bubby in bed. He's been very sweet with her lately. But I did kick him out of the bed because it was just too crowded for all of us (now he sleeps on a mattress next to me) so he crawls up into my bed in the morning and snuggles with his sister. You can see her arms are filling out again. They were getting awfully scrawny before. :-(

And, finally, I let a group working with palliative care sponsor us this year. I said no at first, just like last year (I'm a proud mama and do what I have to in order to make xmas for my kids awesome) but they asked again (almost begged it seemed like LOL) and Adrian really needed new clothes so I said ok. I didn't expect quite so much though! I had about 12 presents under the tree. Family added about 5 more. By the time we opened them though, there were 55 presents under the tree! Yup, all from the group that sponsored us. They also brought 3 big packs of diapers for Charlie which will probably last us months. We still use cloth about half the time, so a huge pack of diapers last at least a month. Adrian got plenty of much needed clothes (the kid is growing at a phenomenal rate....about 6 inches in the past year and 3-4 shoe sizes). Both kids got some toys. And I even got stuff! A winter coat, bath towels, slippers, a shirt and sweater.

And another one!

2009-12-20T20:04:00.000-05:00

The same person that made the extended rear-facing video also made an extended harnessing one. She's been busy! Look for Adrian in this one. ;-)

Excellent new rear-facing video!

2009-12-18T14:18:00.001-05:00

And Charlie is in it so watch it! LOL

I may be small....

2009-12-10T07:32:00.002-05:00

But I'm gonna take up as much space as I can anyway!!!

And one good, smiley day. :-)

Update

2009-12-06T03:23:00.002-05:00

Sorry for leaving everyone hanging. It's hard to update when things are so crappy. It's much more motivating to type out long posts about positive things.

Anyway, we still don't know what the heck is wrong with this kid. She did better for like a week and a half but then she started screaming again. We are going to try erythromycin again for gut motility. So hopefully that helps. We tried it in the past and it helped, but then they changed it (?) and it stopped working so we quit using it. I talked to both of her docs again last week and her pedi admitted that the "gut rest" was grasping at straws. He's just the type of doctor who doesn't want to not have an answer so he suggested that, at a loss.

So, unless the erythromycin works wonders, it's probably still down to a PICC line or putting her on hospice. We can *barely* get enough calories into her to maintain on her good days. But kids can't just maintain, they need to gain. And she already looks like a concentration camp victim. No exaggeration. Normally her nurse gives her a bath. I change her diapers and stuff of course, but I don't often see her completely undressed. She doesn't hang out half nakey like other toddlers do. So I gave her a bath today and I was just *shocked*. I hadn't realized she'd gotten so bad. And then I broke down crying after I put her to bed. Because I realized she needs a LOT more calories than we can even imagine fitting into her. If the erythromycin works wonders, she might be fine. But if it only helps a little, she'll continue to starve. So it would still be down to a PICC line.

The whole story....

2009-11-13T08:34:00.003-05:00

Ok I have a little more energy now so I'll tell more about what has happened the last 2-3 weeks.

Charlie started waking up from a dead sleep just screaming. She'd been waking up agitated, and sometimes whimpering, but after a couple of weeks she was full-blown screaming for sometimes over an hour. She did this for about a week and then she started screaming during the day too. By that time I was pretty sure it was her feeds causing it because she was also retching more and would get better if I turned her feed off. By Saturday the 24th she was screaming when we'd just feed her pedialyte so we took her to the ER.

They did x-rays and a ct scan and put her on IV fluids. They couldn't find anything physically wrong with her or her tube. But we did determine it was her feeds. She'd scream after someone examined her belly and she screamed when they gave her the contrast for the ct scan and screamed when they tried pedialyte at 10 mls an hour. :-(

So we discussed our options. I talked to 3 different doctors about the pros and cons of a PICC line. Pro: She'd get fed. Cons: Very susceptible to very serious infections, over long-term she'd suffer liver damage, her nurse wouldn't be able to do anything with the PICC line, and we'd still have to do some meds in her tube and over time that could become painful for her (it already is to some extent). I decided it wasn't worth it and took her home. The next day we decided to take her in for a tube change. They didn't see anything wrong with the tube, but what the hey, ya know? She actually did a little better on her feeds for a few days after that. Then she started going down hill again.

She started waking up in a cold sweat and her HR was erratic, on top of all her other problems (she's also been battling some kind of illness, culture came back + for psuedomonas). I took her to the pedi and he said his only suggestion was to try a gut rest. That would mean a PICC line for about a month and then trying her feeds again. He agrees that a long-term line is not a good solution.

So that's where we're at. I told palliative care what he said and they are going to discuss it at their meeting. And we'll go from there.

I really hate doing these posts...

2009-11-12T19:22:00.003-05:00

I haven't updated in a while because I haven't had the heart to write these things out. Charlie is below 20 lbs now and we're barely getting her fed. I don't feel a PICC line or broviac is a good thing long-term. We are considering a temporary PICC line to see if all she needs is a gut rest. But if we still can't get her feeds in after that, we may be shutting them off and switching back to hospice.

Her pulmonologist insisted that kids like Charlie almost always die from something respiratory. We never thought her digestive system would be the first to go.

Teeth!

2009-10-23T18:40:00.000-04:00

Miss Charlie is getting her 2 year molars in! She has one completely in, 2 poking through, and the last one is just a bit swollen so far. Just a little bit longer and she's done until she's 6! Yay! I'm honestly surprised that a child with very little oral stim managed to get all her teeth perfectly on time. So many kids like her get them so late!!!

Duh!!!

2009-10-22T15:02:00.003-04:00

Charlie is *2* years old. For *2* years I've been doing things the hard way! Did you know, for $1.67, you can buy little medicine caps at wal-mart that fit in most bottles, that let you draw the medicine up into the syringe without having to pour it into a medicine cup first? They even come with a syringe! Yup. I knew these things existed, and our pharmacy gives us a jank version that aren't as nice and only fit the biggest bottles (only 1 of Charlie's). You can buy them at most places, they are cheap, you can reuse them, and they fit small and large bottles. So I bought 4. One for each med, except her Klonipin. We have the jank one from the pharmacy for that. I plan to get a few more for tylenol, motrin, antibiotics, ect.

Isn't it nifty?

Ok, onto "duh" moment #2. This one I figured out sooner, but still spent a crazy amount of time doing it the hard way. Most pills don't have to be crushed. Just stick them in the syringe, push in the plunger, pull up a few mls of water and let it sit. Some dissolve instantly, others take 5 or 10 minutes.

On to "duh" moment #3. Splitting pills doesn't have to be so frustrating. Our pill splitter is stupid. It never wants to split them exactly in half. Sometimes it's so bad that it'll split off a tenth of one and the other 90% is just sitting there. How does that help me!? I started using a steak knife. Getting down real close to the counter to make sure I had the blade in the center and then hoping my hand didn't slip as I shoved the knife down. When a pill has a line down the center....you can BREAK THEM IN HALF!!!

Good grief, I've been wasting a lot of time on unnecessary med chores!

Ladybug Charlie.

I kept out some of her summer clothes and bought like 5 pairs of leggings from wal-mart for $3 each so I can layer a bunch of her outfits. She still fits in all her summer clothes AND all her winter clothes from last year. So leggings and boots and she's DONE. Awesome. Adrian on the other hand....can you really stack books on their head to make them stop growing?

Miss Charlie

Settling in...

Happy New Year!

Lots of changes!

Sleep clinic and sleep study scheduled!

PICU stay!

So I was cleaning out my closets the other day....

Adrian

Still on the car seat thing...

Just a few pics...

Just playing around...

Guess what!?

Happy Birthday Charlie!

100% better!

First pneumonia of the season!

All about Adrian!

School, and car seats, and Christmas, Oh My!

End of summer :-(

Haircut!

Sorry!

Well...

A rough few weeks...

Not a baby!

Update...

Update on salivary gland ablation...

Salivary gland ablation!

Seating clinic

Well, look at me go!

Wow, it's been a long time again!

No, I didn't fall off the face of the Earth!

Weight gain and other stuff...

School issues...

Videos!

Adrian's new glasses!

Goals for 2011!

Just random stuff...

10000

*Just* a virus!?

Just pics...

So excited for Christmas!

Christmas is just around the corner!

Autonomic stuff...

Things have been crazy!

Happy Birthday Charlie!

Zoo trip!

So this is my "exciting" post!

Well we're home...

Update...

Inpatient!

Carnival!

So a little bit on Adrian...

Firsts....

Tummy troubles (again!)

Lots of great stuff going on!

Haircut!

Positive results!

Update!

More on the procedure...

Clarification...

I'm nervous!

One piece outfits!

Changes...

The little things...

Hospital pics...

Huh...

Hospital update...

Hospital stay...

Lots of stuff...

Relax, she's alright!

Crazy stuff...

Pics and the Most Awesome Story Ever!

Who's out there?

Lots of pics!

Charlie's Christmas present...

Update on botox...

Botox...

Long overdue post....

And another one!

Excellent new rear-facing video!

I may be small....

Just a virus!?