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!"
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!
5 comments:
yay for communication :)
LOL...Charlie does love her Candy, doesn't she? I hate when people assume that someone who cannot communicate is cognitively disabled! My littlest guy ( 5 in November) could not talk until close to 2.5 years old due to apraxia, but we quickly discovered that he was SMART. At 3.5 years old he was doing the same work as his typical 5 year old peers!
Just an idea, but what if you color code her Left and Right? Maybe lavender for left, and red for right? You could use something simple such as Silly Bandz since they are colored.
I was just curious if there had been anything decided about preschool yet. Chances are, Charlie would really enjoy being with the other kids...
Actually I think I have decided. We'll probably just send her and hope for the best. LOL I know there will be times we'll have to keep her home, but I think it will be good for her. I've always been about quality of life, not quantity, so it doesn't make a lot of sense to make her miss an experience because she *might* get and illness that *might* contribute to her death a *little* earlier than it might have otherwise happened.
We haven't actually discussed details so I don't know much about the program. I do know that she would be in a regular classroom with a full-time nurse (one of her regular home nurses).
So happy to hear about the wonderful progress C is making - congratulations! Joe says "hi!" - Actually he says something more like "uhhh" but there you go ;-)
Having had a child in a special needs classroom for 2 years now, I can tell you that she will have a great time. Here in the Olentangy school district, they have a mixed class ( either 8 SN and 4 typical, or 6 SN and 6 typical)of 12 kids plus a teacher and an aide. The kids are pulled aside for their therapies ( speech, OT, PT) and sometimes therapies are built into the lessons and activities. In Clay's class they had a sensory table that they switched around every week or two. It was one of the activity choices they could do daily. Charlie *might* even be able to participate in snack time by licking her portion of snack ( I saw this on a discovery health channel show about a little girl with bad facial deformities who doesn't eat by mouth) since she is able to be suctioned.
I totally agree with you about quality over quantity. Charlie has overcome so much, but she deserves to have as many typical experiences as she can.
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