Time is winding down...

My sweet pea is tired. He is not sleeping well at night and he is showing me that his back is hurting. Poor sweety just holds his back. Our wonderful doctor, actually the one who resussated him at two weeks old before he was brought to us, gave me some suggestions that are helping. It is time for another expansion surgery.

At the Marcus Institute we are now working on chewing and closing lips. The protocol is much the same, a three step, but complicated for me for some reason. I think because I am not sure when and where it fits in the first protocol. Our goal in the next two weeks is chewing and starting to self feed.

Wow that would be awesome.

We ran into so many snags since I posted last. The doctor wrote a script for duocal to add to his applesauce and we sent it to his medical supplier. They in turn assumed that since he was eating he did not need the G tube supplies and the insurance would not pay for them. HA! It took three doctors and a lot of calls to them straight. I promise I faxed a letter to them at least three times before they acknowledged they had it. Great Day!
We did finally get a shipment of his supplies. He is consuming 50% of his caloric needs on a good day. When he is not feeling well he is dropping to about 30%.

He is changing, growing up. Even his face is different in the past month. I think eating has slimmed his face. I keep checking to make sure it isnt weight loss. I think my baby is growing up.

We go in for a sedated hearing test next month and I am sure the expansion surgery is coming up in the next month too. We were given the not so great news that he will need another VEPTR II implant recently. That will come at the end of the year. Thats like getting hit by a truck...it takes so long to recover for him.

When we decided to fight for the VEPTR II implant in the first place, it was to extend his life. When you are told that your child will not survive his 10th birthday, you start fighting. Now we are faced with the same mountian again. When I rub his back and feel the implant and scars I wonder "how much more will he endure to grow up?" He is such a loving and happy boy. He deserves so much better.