Update on Michael

Michael is doing very very well with his Evan's Syndrome - at least the parts they know about it. His platelets are still normal, and so he is down to lab draws once a month and telephone conferences with at least one of the many many docs he sees. His lupus is mild. His heart is normal. His sun sensitivity has decreased the last few weeks, and so he is back to wearing normal clothes. At least he can go out with slightly less layers. We still have to be diligent with the sun screen. Anyone know where I can find the Neutragena Helioplex UVA UVB 85 ! I can't find it anywhere except commercials. Usually it is either long sleeves or long pants, but at least it can be one or the other. His extreme skin, touch, light, taste sensitivities also seem to be a little calmer (still there but not as loud). He is on some diet changes for his stomach but not anything major. One of them being to incorporate mangos and papaya and white grape juice into his diet (which is also slightly better). We are anticipating starting Growth Hormone shots in August, Neurology evaluation in September for the PVL and Hypoplasia, and finishing the Asperger's evaluation through Psychology in the next couple weeks. The specialists want to see the MRI films again as they are concerned about other midline brain problems. Cortisol is now NORMAL; it ended up being just suppressed because of the Prednisone, which he is now off. While he had ROP as an infant, he has no active retinopathy now. Again, yeah ! Overall, I am very glad to report much better. Still lots of doctor appointments, but hopefully they will continue to slow down.

Jennifer