Alex and Maddy

Alex and Maddy

Sunday, April 14, 2013

Update on Appointments

We made it home from our trip to Houston late on Wednesday. It was kind of a mixed bag.

Monday we only had one appointment with our Pulmonologist. It was by far the "worst" appointment of the week. Alex has been complaining of shortness of breath for some time. I knew it needed to be addressed, but wasn't ready for some really bad news! We repeated Alex's PFT's (Pulmonary Function Test). Two and a half years ago, Alex's PFT's were perfect at 100%. We have been watching them slowly decline since then. Presently, he is sitting at 40%. More concerning, they are showing a "restrictive lung disease" pattern, not asthma. This confirms our worst fears that Alex's GI problems are negatively impacting his respiratory status in a big way. His GI bloating and distention has always been a problem. It is so extensive at this point that it is resttricting his lung space and not allowing his lungs to expand properly. This needs to be addressed immediately. Unfortunately, we have already been aggressively trying to control the bloating. It is a real possibility that we may lose feeds do to this problem. It would be devastating to go TPN only because of this after working so hard for so many years to keep some feeds going. We see GI Tuesday and this will be a big topic of conversation.

Tuesday we saw Dr. Koenig. She is overall very happy with where Alex is, but concerned about this new development. We also saw the opthamologist. Alex's eyes are nearsighted, but because he doesn't drive we can hold off on glasses a little longer.

Wednesday we saw Dr. Pacheco who was also thrilled with how Alex looks and is doing. Things are status quo from her stand point. We also saw cardiology. Alex's ASD closure looks great with the closure device in place and no leaking around the edges. YAY!

In other news, we have withdrawn Alex from school this week. At the beginning Alex loved going. He looked forward to it. I think a big credit goes to his first teacher who worked really hard to make Alex feel included. In February, she moved into an administration position and he had a new teacher. We have also noticed Alex's anxiety and OCD getting worse. We had a couple of thoughts on cause, but we knew the pressure of the upcoming end of grade test was one of the causes. That coupled with the chaos of our new schedule were a lot for him to handle. He wanted to go less and less and was acting out more and more. Weeks we didn't have school we noticed a totally different child. Regardless, we were sticking it out....until I got a call last week informing me that Alex's homebound teacher was also being removed and changed to someone new. Another change in teacher after working so hard to establish a relationship with our other teacher is not in Alex's best interest. It was the final straw. Alex and I have been very happy and successful homeschooling for many years and are ready to get back to "normal".

We have had a really nice visit with Mimi and PopPop and are really looking forward to our summer trip!
Ali

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