Alex and Maddy

Alex and Maddy

Saturday, May 17, 2008

Alex still has a significant fever. After a night of tylenol every 4 hours he is still a little above 102. So we are hanging out for the time being. I do not feel comfortable heading home until we are sure he is okay. I would hate to get home and have to turn around and head back. My hope is that the fever will break and we can make it home in time for Brookie's (Alex's Girlfriend) birthday party tomorrow.

As for our appt with Dr. Koenig... There was some good and some bad.

The good: She is starting Alex on some supplements. We are hoping his tummy will tolerate them. We will trial them one at a time like we would a food. Dr. koenig will continue to monitor Alex's whole body. His eyes and ears we will test yearly, his heart every other year. She does not feel like we need to repeat the MRI or EEG unless we are seeing signs of brain involvement. The rest of the organs can be checked through bloodwork. She is okay with letting us allow him to do as much as he wants which is great. He pushes himself much harder when he is with his friends then when he is just with me. She said if he wears himself out, he will feel the effects for a few days, but it isn't dangerous. Both the GI (in Houston and Cinci) and Dr.Koenig are all in agreement that we will stop food trials for the forseeable future. It was pretty funny, she talked to Alex about food. She asked him if other people ate more food then him. He looked at her like "are you retarted" and answered "yeah". Then she asked if it bothered him. "NO". She wanted to know why he doesn't like to eat. "Because it always makes my belly hurt". So she was content that "psychologic​ally" he is okay with not eating. We all could of told her that couldn't we!

The not so good: Probably the hardest part of the appt for me was talking about more children. She is pretty certain that Alex's form of mito is passed down through the mitochindri​al DNA. Which means it is being passed down through me. If we were to have another child, they would 100% have mito. They could have virtually no symptoms like me or they could be similar to Alex or they could be much worse and there is no way to know. Basically it is a crapshoot. Once we are certain it is coming through the Mitochondri​al DNA she wants me to look into other ways to have a child. Whether it is through donor eggs and I could still carry the baby or through adoption. So that was really hard for me.

Dr. Koenig cannot give us any prognosis at this point. She is encouraged that at this point not a lot of organs are involved. Of course that could change at any point, but for now it is good news. She does not think his strength will get any better then it is now. It may stay the same it may decrease, but it will not get better. A lot of the stuff we are seeing, there is nothing we can do about (his temperature control, his pupils dilating, etc) She is hoping his energy level and leg pain will improve with the supplements.​
Neutral stuff: She said we are okay to try and push the pooping on the potty issue. She wants me to split up his vaccination​s at his 4 year check up. He can only get one shot at a time and they have to be spaced out by at least a month.

We are coming back again in June to see surgery (just to check his port), endocrinolo​gy, immunology, and run a few more tests.

I think that covers everything.​
Ali

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