Wednesday, November 16, 2011

My Precious Boy

Just wanted to give you all a quick update on Caleb.  He is doing better and better every day! He is keeping down his food and has also continued to gain weight. (we are up past 18.5 lbs now) He has physical therapy every week and the last 2 weeks the PT has noticed him getting stronger.  He is sitting better and standing more balanced as well.  I didn't used to be able to carry him on my hip very well because he was so unstable, his core muscles weren't strong enough to hold him up.  But now it's no problem at all.

Today was the best day yet, he actually wanted me to put him down so he could stand at the coffee table and play with his "Ra ra."  (Translation- Elephant.  yes I know, makes no sense! haha) Anyway, he would bend down and put it on the lower shelf of the table and then stand back up.  (he needed help getting it back from the shelf but no matter) He has also been crawling more lately, and today especially.  He stands at his tool bench and plays, crawls over to the garden and checks the mail, (his favorite) and tonight he was even crawling around chasing a balloon.  For those that haven't seen him all of these things are such a huge improvement over where he has been the last few months.  It was not all that long ago that he pretty much just sat in a chair most of the day watching TV and even that was too exhausting so he would roll out of the chair so he could just lay on the floor and watch TV.

Our appointment for his consultation for the muscle biopsy is next Monday the 21st.  We are hoping to have the procedure done the beginning of December.  With all of his drastic improvements lately I really want to get him started on his vitamins to see what those do for him as well.  (we have to wait until after the muscle biopsy to start the vitamins as they could interfere with the results)

As far as why the improvements over the last month or so, well, God is really the only answer I have. (and it's really the only answer I need!)  Caleb was throwing up multiple times a week for over 4 months, and then one day he woke up and hasn't thrown up since.  (that was over 2 months ago) He had declined to where he was not able to sit up and had no desire to stand or crawl.  He didn't really want to eat much, and it was the same few things if he did eat.

Now let me be really vulnerable here, I have read that with this disease there can be times where they get better and times when they get worse.  I'm standing in faith that he will not get worse but only continue to get better.  But sometimes I am scared to hope that he will continue to improve.  I am scared to tell people that he is doing so well because what if tomorrow he isn't?  It's in those moments that I stop myself and I praise God for today.  I thank God that today my son is feeling so good and is physically stronger than he was yesterday.  I thank God for his charming personality and adorable little face.  His smile brightens up the room and you can't help but smile back.  He is such an amazing little kid and I have such hope for him.

Please continue the prayers, they are working!! :) Thank you all for your love and support as we walk through the trials of this life.


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