Blogging about life and raising our five kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Thursday, April 09, 2009

Expander update

I'm thinking this was the worst medical decision I've ever made for Angela, and yet, it's necessary. Please know, that if your orthodontist is recommending one for your child, that Angela's reaction to it is NOT typical! She has an unstable swallow in the first place (she was on a gtube until age 3.5 because she aspirated everything.) So adding the appliance is just triggering all kinds of problems for  her. It's ALSO brought some problems to light that I thought were no longer a problem, such as her method for chewing and moving food to the back of her mouth! That's why she's having so much trouble eating food with this thing!

So, take that little problem, and combine it with the fact she's on the new seizure drugs. The kid is miserable and exhausted! Last night at swimming she did about 3 or 4 laps and was done. Normally she does 15-18 laps, plus 1/2 hour of free time with her friends. Well, last night it took her FOREVER to get into the water in the first place, because she was kind of lost on another planet. Then she did a couple of laps, then just stood at the shallow end of the pool in a daze. She didn't even want to play with her new friend J. In fact, J. was talking to her and Angela completely ignored her. I think she was just too tired to respond, and poor J. (who is only 5) was confused about why her friend was ignoring her. 

I finally pulled her out of the pool and headed for home. She took a shower, and TRIED once again to eat solid food, only to get frustrated to the point of sobbing tears while sucking down another Ensure drink. I think pudding and apple sauce are going to be staple additions around here. I wonder how she'd do with mashed potatoes? It's one of her favorites, but I know they can't have ANY lumps, and would have to be on the thinner side. 

 Have I mentioned Angela never cries real tears? She's cried more tears this week than she has in her entire lifetime! I just feel so bad for her. Last night in the car she looked at me with tears running down her cheeks and said, "Mom, it comes off for my birthday, right?" Oh man, I hope I'm right in the timing! The ortho said about 2 months, so I'm using her birthday (June 6th) as our focal point. Please Lord, let this thing be off by her birthday! What a present that would be!

2 comments:

Lund7 said...

Hi! Not sure who your ortho is...we use Jennifer Eisenhuth. My 14-year old also sees Jennifer Connolly, a speech therapist, because she has a tongue thrust and has difficulty swallowing properly. My son with DS, Ricky, also has that tongue thrust and will need to see her at some point. Sorry she is having such trouble with eating, poor girl!!

JennyH said...

Poor Angela! I hope it gets better within a couple of days. I'm sure it feels very funny to her.