Wednesday, May 7, 2014

Letter #25: January 1, 2011

Happy New Year!
I hope this new year brings about all wonderful news and progress. 

We still have not received the results from Cameron’s blood work.  What could possibly be taking so long.  I was told 3-4 weeks.  It’s been 5 and a half weeks.  Are they just not going to tell me until our follow up appointment on 1/11?  Is it possible that it’s not Rett and they are testing for other things now? 

Cameron had her swallow test done on 12/23.  As we suspected, she is not swallowing her food.  She takes 3 bites and swallows.  Things like waffles, oatmeal, pasta, etc. are just sliding down her throat and probably breaking down easily.  Harder foods like meats and cheese are not breaking down.  When they watched her drink her juice, they noticed she has reflux.  So, with a combination of the reflux and hard foods, she sometimes throws it all up. 
We immediately changed her diet.  We took away all hard foods and acidic foods and drinks.  It has made a huge difference.  At least, we are attributing it to the change in diet.  In 10 days, she has not woken up once in the middle of the night and has even slept 1-1.5 hours longer in the morning!!!  I hope this continues.  We need to go to a nutritionist and GI specialist to get more information though.  In the grand scheme of what is going on, the not chewing and reflux is a very minor issue. 

Billy took Cameron to get her eyes checked on 12/30 at the Wheaton Eye Clinic.  He was very impressed with how thorough they were.  They spent an hour with her.  Her eyes have gotten stronger, however she is farsighted.  This news was definitely not surprising to us, as neither of us can see.  So, we get to go pick out some glasses this week.  Hopefully the glasses will help her.  We think she’s going to look so cute with glasses!

On New Year’s Eve, during the last half hours of 2010, I could not stop thinking that this is the last year (time) that we will have with our angel without a diagnosis. 

I hope I will have the strength to be the mom that Cameron needs me to be.  I hope she will never suffer or realize that she is different.  I was told that parents of kids with special needs hurt more than the kids b/c it’s the parents who know they are different.  I just wish Cameron would have all the same opportunities as every other child. 

How did we get here?  

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