Tuesday, November 16, 2010

Things have been crazy!

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!


sarah said...

chances are, the SLP will tell you that Adrian's stutter is not a big deal. My 5 year old has been in speech for oral apraxia for 3 years now, for the last 2 years he has been treated off and on for a horrible stutter. As he progresses developmentally, the stutter goes away then reappears like 6-9 months later.

You are awesome at the felt stuff for the kids Christmas gifts! Have you ever thought of making extra and trying to sell them at a craft show/flea market, or even online? I bet you could make a little extra cash that way!

Debbie said...

Firstly, your new place is awesome! Congrats!!! We just moved from a little 1 br/1 bath in NYC to a 2BR/2Bath in LA, so I know how good it feels to spread out AND not have to take the bath chair in and out all the time!

Secondly, I had a similar stutter thing as a kid. I remember knowing what word I wanted to say but just couldn't get the damn thing to come out of my mouth. My lips would form the first letter and my brain knew what I wanted to say...but I couldn't catch my tongue and mouth up to it. It was really frustrating and upsetting for me. Some kids teased me. My mom was told not to make anything out of it -- literally to ignore it and I eventually outgrew it. Looking back, I'm glad my mom ignored it because as long as she wasn't treating me differently or calling me out on it -- I didn't think it was "that bad". You know what I mean? Once a parent shows ultra concern, you get the sense that something is really wrong with you. It took years, but I did outgrow it.

Thirdly, I think it's great that you want to be "that mom" with all your ducks in a row. Go girl!!!

Can't wait to see all the other cutie gifts you come up with for your family! It's always fun and quite impressive to see your crafty side;)

swgoats said...

I wish Texas Medicaid would let us have store brand diapers. We get those generics from Medline! No contour whatsoever... Pampers do have that smell, but I'd still take them over the Medlines. :-)

I have to give you kudos for doing the cloth - that was one thing we had to give up when Joe came along. We couldn't keep up (maggots in the diapers is so not cool!!!). :-P

We are trying to help the planet by sitting Joe on his little potty now (fully supported - he can't sit). He nearly always goes when we put him on. We need to get organized and make a schedule.

Keep up the good work mama!

Shauna said...

How great that Joe is using the potty! I was telling Debbie (who posted before you) that I had talked to a lady who had potty-trained her daughter wit quad CP. I don't know how old she was when they did it. I think she was 13 when we talked and she wore underwear all day (no diaper back-up!). She was able to sit unassisted, but that's not something she did right away...she like 6 or 8 before she could sit. So we're not talking about mild CP here. I just think it's so great for these kids to be able to use the bathroom. Yes, they need assistance each and every time, but there has to be a lot of dignity and self-esteem gained from not having to use diapers. I would love to try to put Charlie on the potty, but that would take a full-backed chair...I'm not sure we would be approved for one.

Debbie, thanks for sharing your stuttering story. :-) I know that stuttering can be triggered/get worse from anxiety or stress, so I've not said anything to him about it. The SLP knows we haven't said anything. So hopefully we can keep the hoopla about it to a minimum. Even if we do end up putting him in therapy, hopefully he's old enough to understand that it's to help him, not to make him feel badly about himself.