Day 43.

Afternoon update:

The day started with a great physio session again for Jack. The therapist was really happy to see that Jack could roll over on his own. She said she was excited to share the news with the doctors that afternoon. We kept working on strengthening his arms and core for preparation for crawling and holding himself up.

We then had our meeting with the team of doctors: one representative from the neurology department at the University hospital, the head neurologist at Kreischa, and 3 other doctors that are on our ward’s team.

I’m happy to report that after extensive genetic testing, they can say with 95% certainty that Jack does not have the one type of autoimmune neurological disease. (The scary one, with a poor prognosis). They will continue running tests in the hopes of saying with 100% certainty but it’s certainly good news. They will also continue to run tests to determine if there’s a chance he may have the other autoimmune neurological disorder that requires the vitamin therapy he’s currently on, however I think they first wished to eliminate more serious possibilities.

Overall the doctors seem very pleased with his progress, especially one of the doctors from our ward. He spoke English very well and was very encouraging. He said he hoped with Jack’s progress that they would be able to remove the NG tube next week, if he’s able to drink enough water on his own. He also commented on the fact that Jack seems to be making a fairly quick recovery which was great to hear.

He was very supportive of the idea of going home to Canada to continue therapy. He even commented on the importance of both us and Jack being around family and our support system and the positive impact that will have. (Which is totally how I feel!!) That being said they do recommend continuing for one more month and after their meeting with therapists this afternoon will apply to our insurance company for a renewal. So I imagine we will hear later this week exactly how long they will apply to renew for and then early next week at the latest  if we’ve been approved by our insurance company.

After the meeting and doctor’s exam, Jack had a good OT session where he did pretty well practicing drinking and even got to try some banana (his fav!) and cake to practice chewing. After some bites of mashed banana he was no longer interested in the carrots and turkey purée and gave us a pretty funny smile and waited for more banana lol. Turkey.


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