Monday, February 23, 2009

Then (2007) and Now (2009)

The past two years have seen a lot of changes. Look at these pictures and see how much Jack has grown and developed!

Two years ago, we spent too much time in Dallas in January. We were very worried about how low Jack's oxygen levels dropped while he slept at night. I worried about how he would be able to breathe while sleeping. I worried about what we needed to do and then we went through countless sleepless nights to get Jack started on CPAP and then Bipap. Now we have the Bipap AVAP and he does great! We worried about whether the subdural shunt would really protect Jack from having too much pressure on his head all by itself. It didn't and Jack had an endoscopic third ventriculostomy, then a VP shunt which became infected and had to be removed. Since we had it replaced, we had one scare that turned out to be an ear infection and cellulitis. Now the VP shunt is doing it's job and there are no concerns about pressure! Wooohooo!

This year, we learned that Jack has even poorer vision in his right eye than we'd thought. He is actually legally blind. We worry about the best way to teach him to read, how this will affect his life....can't wait to be on the other side of the worries over this one! Keep us in your prayers.

I want this blog to be real. It is about the real life of a great little guy who continues to amaze me as he adapts to the world around him. Well, I wouldn't be real if I wasn't honest enough to tell you that today the vision thing and all the other things hit me hard today and I cried. I cried because it's not fair. I cried because I want to make everything right and perfect. I cried because I feel like if I'd only done better for my little guy, he would not have to go through so much. I cried because there are idiots in the school system. [All the while acknowledging that there are good people there too.] I cried because I did not think that anyone else could understand.

I think back to the past two years and I cried out many times right here on this blog about that CPAP. Here we are now and Jack's latest sleep study was fabulous on the Bipap AVAP. Dr. Fearon says that the two things he most worries about impairing the development and cognitive abilities of kids with Apert syndrome are taken care of for Jack--excess pressure on the brain and not enough oxygen to the brain while sleeping. All that crying and God had his hands on my family the whole time!

I'd love to declare that I am done crying and from here forward I put all my trust in the Lord, hallelujah! But you and he knows that I'm not that good.

1 comment:

Cole's mom said...

You are an amazing mother!!! Don't ever doubt that! He is so cute and has grown so much. Look at all the obstacles he has had to work through and has come out shining. He is an incredible kid. Can't wait to meet you all in June.