1 year + 34
1 year +34
Friday brought Tates new wheelchair! It actually delivered with it some unexpected emotions for Tate. Seeing that wheelchair was tough as it looked too permanent and represented a lot of emotional and physical pain. Yet…by Sunday, Tate was willing to give it a try and even wheeled herself a bit for an outside walk with PT Abbey today. It maneuvers beautifully, has amazing tires and the anti tip wheels came in handy a few times as Tate was learning the feel. And it’s pink with a bit of sparkle, just like Tate.
We had friends come stay with us Thursday-Monday. We love the Zemlicka’s and sweet Emmet and Edalyn were a fun distraction.
We’re still waiting on the full BMB report. I didn’t want to share until we knew for certain, but many are asking and I don’t want people assuming the worst. Preliminary reports look like the Trisomy 8 has not come back in Tates bone marrow. The relief is palpable, but guarded as we aren’t sure the source of all the inflammation. This is huge despite everything going on!
Tates oligoclonal bands (OCB) are 15 in both her CNS fluid and blood. This is very very high and indicates severe systemic inflammation. These are a type of antibody. We started the immunosuppressant and received approval (after a very fast appeal-hallelujah!) for IVIG. That along with steroids happens Wednesday and Thursday.
We switched to morphine on Friday and have already hit our maximum dose. It is helping a bit more but doesn’t last. It’s liquid and goes through Tates G tube meaning increased nausea. Next step is to switch to long acting which will be easier.
Keep our friend Emma and her mom, Angie, in your prayers. Emma is battling liver complications after a transplant 19 years ago! She’s been inpatient a month and complications just keep popping up.