Now that summer has come to an end I can admit that we've had a terrific one, health wise anyway. Our last hospital stay was in April! Of course we spent pretty much the first four months as in-patient, but hopefully we were just getting it out of the way ;-) We had one ER visit at the end of June while in Aptos visiting family. The resulting illness was not so extreme, especially considering he went in with a fever of 105.1.
Only strange kind of bummer thing is we've had is a new diagnosis by Dr. Dobyns in Seattle. After looking at Ian's MRI's, a bunch of clinic notes and having a conversation with me, he feels Ian has what's called Megalencephaly, polymicrogyria, and hydrocephalus (MPPH) syndrome. Of course it's extremely rare, he only knows of 50 cases in the world and he's one of the experts on it. Anyway, all it means is we could now have a reason for his extremely large head. And what it could mean to us is the same as our previous diagnosis of regular PMG. A multitude of not so great things that you just don't know until he grows and exhibits symptoms.
We are supposed to see a Dr. Graham at Cedars here who also specializes in the understanding of the syndrome, and who works very closely with Dr. Dobyns.
Other than that, we continue to work with our OT, PT and Speech Therapists to help Ian to make progress in all things mental and physical. We've also been seeing Dr. Dolgin, an Osteopath, and what he exactly does for him I still don't understand exactly ;-) But ideally his treatments are supposed to help optimize Ian's health, especially in the brain department. Dr. D specializes in children's brains.
And lastly, we just returned from a short trip to visit family which was lovely. And we had a magical day today!
Lila is back to preschool 3 hours a day. Dr. Dolgin and the PT cancelled this morning so we had 2 hours to snuggle on the couch, read, eat and play. With just enough time to do breathing treatments and meds before the speech apt at 11. It was wonderful! Especially after him waking at 5.
Then, after picking Lila up from school and him attempting a nap for an hour and a half, we headed up to UCLA to pick up his meds. There we ran into a couple nurses who worked with us while in the NICU. They brought us up to see another and it just so happened that the doc who saved him upon birth, and the one who was his 1st attending on in the NICU, happened upon us as did 2 out of 4 of his primary nurses. And I spaced on taking a photo! Lila was with us and she had eaten some dibbs which caused her to be literally running in circles while we chatted.
After leaving UCLA and sitting in about 40 min of traffic to get to SM (during which I was strangely mellow) we made it to the optical shop to drop off mike's broken glasses (Ian thinks they are his toy ;-) After which we grabbed some food and headed down to the beach for a picnic. A most beautiful evening to finish off the day!
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