It has been a while since I have had time to update, but better late than never.
We got to Wisconsin on June 16th and started treatments on the 17th. The first thing I noticed is how Meg's vision got noticeably better and her eyes got very clear and bright. She seems to be tracking most of the time and I think she can see farther distances than before.
Her energy level is unbelievable. She is not tiring so easy and has so much more stamina to accomplish therapy. Also mentally she is much more present. Physically she has finally discovered she has hands - I am not sure she knows what they do yet, but she knows they are there and I am guessing she likes the way they taste.
She really is enjoying getting her hands in her mouth when she eats and then rubbing it into her hair......its all good - I have been praying to be able to be frustrated with little things like this. I can't wait for her to tell us NO! and then run away like a bad little girl - it is going to make me so happy.
I am seeing so many little things, but they all add up to so much. From what I have learned this is typical of the first 40 treatments, The next two sets of 40 should knock us off our feet. We come home on the 17th and I have to start to make arrangements for 40 more in conjunction with the intense physical therapy she is getting. That is going to be a challenge to have to leave the family again. I miss them and I know they miss us too.
It is hard but we have pulled together for Meg. James and Ryan could not get enough of her when they came out to see us over the 4th of July. James said she said Hi to him and he was right.
On Tuesday, July 8th Meg busted out a - "HI". It was crystal clear and everyone in the therapy room was silent - I think in shock for a moment - then it was pure excitement. She said it a couple of times today too. Everyone here is great.
I have came accross some genuine people here who know where I have been as they have been or are there now and are so supportive. It has been perfect for us.
Mayci is another little girl treating here now. She is 7 and has mitochondrial disease. Her muscle biopsy showed the same as Megs - Coenzyme C Oxidase Deficiency. Check out her website if you can @ www.westtennesseecares.com.
Shannon is Grace's Mom (the article I read that got me here) and she has the biggest heart. Grace is amazing and so funny. James and Ryan really enjoyed her and were happy to hope that Megan will be able to progress as Grace has and start having some fun for a change.
By the way, Meg is smiling a lot more - she thinks she is funny too! Her temper is still pretty fierce, but she comes by that honest..... must be from Daddy (we have to blame someone). I cant say thanks enough to everyone for all of your help and support.
Thanks especially for all your prayers - God heard us. I want to thank Him the most for everything he has given us and for enabling us to have a baby as sweet as Meg and giving us the abilities to care for her. It has broadened our life so much and changed it forever for our ENTIRE family and many of our friends.
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