#1. Right after we got home, we made an appointment for Katya to get further input about her body absorbing her skull bone. She'll see a Dr on the 21st, and if need be, we will get a referral on. We want to see what if anything can be done to help halt and then reverse this process.
#2. Before anyone asks, yes, we do plan to get a second opinion, and are setting things in motion to make that happen. This will be from another cranial-facial specialist in plastic surgery.
#3. We heard from Katya's eye Dr at Johns Hopkins today via a phone call. He said that after reviewing the information from her other Drs, he is going to recommend that Katya not have any surgery on her eyes right now. He said there is nothing wrong enough that it should be surgically corrected in a separate surgery. So no surgery right now for Miss Katya on anything. I told him that there is no way we want Katya to have any elective or "extra" surgeries due to how traumatic the medical things are for her given her past history of abuse and trauma. He said definitely not, and seemed to "get" that on a level some have not. I'm grateful. He wants to follow up with her again when we return for follow-ups to her other Drs at Johns Hopkins.
#4. We had a IEP meeting last week with Katya's school that was a pretty good one--especially compared to previous ones! It was almost fun! Not quite, but ALMOST. Lots of positive convo about Katya's progress, and lots of good cooperation. I'm grateful. There were 4 new faces on The Team that we had never had there before, so it was good that it was able to go so well. We will have the big official IEP meeting to re-write goals and such in December. Hopefully that meeting goes as well as this one did!
Points from the meeting: The new SLP stated that she would agree with our suspicions that Katya is probably dealing with Apraxia. Katya is doing great with the Special Ed teacher and goes to her once in the AM for reading/writing practice, and again in the afternoon for Math work. The Special Ed teacher stated repeatedly that she really enjoys teaching Katya, and loves her sense of humor! ;-) Her enthusiasm is one reason Katya is doing so well this year, I think. The OT explained that Katya has made tremendous progress and is close to meeting her goals--she will need new ones by December! This is good news, but does not surprise me, given how much improvement we have noted on things. It also got clarified that we DO want ESL services continued AND emphasis still on teaching Katya to talk. There had been some confusion about that, so it was a good thing we requested the meeting to sit down, meet all the new faces, and just make sure we are all on the same page. It also gave us a good chance to update the school about Katya's recent medical appointments and the change in plans surgery-wise, as well as the on-going head-precautions that are definitely needed.
So, there is the current news!