6/2 - Some Updates

Leo continues to improve, he is now more awake and alert and getting back to himself. The seizure medicine seems to be stabilizing. He is almost back to his normal regimen with the ventilator where he is off the vent all day and only on it at night when he sleeps. No more signs of seizures either which is a good sign.

We are trying to get follow-up Neurology appointments scheduled which has been interesting. Peoria is now down to only 1 Neurologist which only sees inpatient, acute situation children. Leo got lucky to see him while he was hospitalized. And to be honest, the few days we were in the hospital he was there until mid-night every night and was back again first thing in the morning. Peoria Children's Hospital is now referring us to Campaign and Chicago clinics because they don't have a doctor that can see him unless he is hospitalized. And when we try to get appointments scheduled other places, it will be anywhere from August to October at the earliest we can get in.We think a University setting is the best for Leo, a setting where people are very interested in the research aspect of Leo's disease and are more on the cutting edge of understanding and treating the disease. We feel this is better than compared to the current level of care which is basically acknowledgement of the disease and treat any emergency. So that has been frustrating.

But then there are doctors like one from John Hopkins University that Kate is talking to that looked at Leo's MRI in less than 24 hours and provided his opinion. More information in a simple email than we have received from Neurologist out of Peoria in 18 months. The University of Washington also has been very helpful in helping us understand Leo's challenges. Here is the email response we received Johns Hopkins, I cut out some of the filler but wanted to show the response. Kate is amazing with the contacts she is able to make.

"Thank you very much for your email and the MRI images of Leo. I was able to review them. I can confirm the diagnosis of pontine tegmental cap dysplasia. The MR images are classic for PTCD and I have no doubts about the diagnosis. ........ there is a spectrum of severity and not all children with the same disease are similarly affected. For PTCD, it looks like that mildly affected children tend to have a rounded bump (the so called "cap"), while more severely affected children tend to have a more angular brainstem kink (a so called "beak"). Reviewing Leo's MRI, it looks like that he has a "beak" rather than a "cap". .....In summary, I think that the MR images of Leo are diagnostic for PTCD and in the PTCD spectrum, he may be part of the severe spectrum."

Updates on budget cuts and nursing - not really anything to update there. The State still doesn't have an approved 2016 fiscal budget and will be entering an extended summer session soon to pass the budget before it takes effect July 1st. After spending a few nights in the hospital last week, i couldn't imagine if we had to do that everyday permanently. Please continue to call or write your state representative to show your support for no cuts to the Medically Fragile, Technology Dependent Waiver.