Alex and Maddy

Alex and Maddy

Saturday, January 12, 2008

Hope everyone is enjoying the new year. The first two weeks of January, lots of stuff started coming through all at once.

1. Alex's stroller should be here in the next week or two.

2. Alex's therapist, Elizabeth, had ordered him a special tricycle. We should also have that in about 2 weeks. It is being donated by an organizatio​n, so that is a blessing.

3. Many of you know that we have been trying to get into a program in TX called the Medically Dependent Children's Program. The main reason we have been trying is because it gets us Medicaid as a secondary insurance. But it will also provide nursing care so I can get a break a few hours a week. There is normally a 2yr wait, but a social worker had told us a way to move the process along. The ball has started rolling on this. We have someone coming to the house on Thursday to see Alex and make sure he really has "issues". Once they okay us. I will have to fill out paperwork, as will Dr. Benzick. Then Alex and I will spend a night in a nursing home. They will discharge us 24 hours later and we will be all set. Services start within 48 hours of discharge.

4. We have an appt with the Neurologist who specializes in Mitochondri​al disorders in Houston on March 7th. The contact I have already had with them has been wonderful.

5. We have our next trip to Cincinnati planned. Our endoscopy is scheduled for March 31st. We will followup with Dr. DeGrauw (the neurologist​) and Dr. Putnam on April 3rd. I have told Bruce he better start travelling and earning more points. I am hoping to get another free hotel stay this trip!

I think that catches you up. As for fun stuff, Alex had a blast with Mimi and PopPop. It is always so nice to have family around. We spent a day at the stockyards and then Mimi got a chance to see all the parts of Alex's life, from meeting friends to dr's appts and therapy. Other then that we have played with friends a few times and have started walking with our friends on Thursday. (Well Mommy walks, Alex rides!)

Plea​se keep us in your prayers. I cannot kick this bronchitis and Alex has been sneezing/co​ughing more each day. I am really scared for him to get sick. I dread another trip to the emergency room. One of the things I have been told is that we need to be really aggressive in treatment if Alex gets sick. Kids with Mitochondri​al Disorders or metabolic disorders bodies don't handle the stress of being sick very well. So that means getting IV rehydration and treatment sooner then most kids will. So anyway, pray for Alex to stay healthy.

Tha​nks for surrounding us will love as we forge ahead on this crazy rollercoast​er of a journey.



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