So yesterday, was hard. That is all I have to say. I was "planning" on going in there and the doc. saying she is making so much improvement just keep us updated and see you back in a couple of months.
That is NOT what she Said.....
She proceeded to tell me there will be lasting effects.... LASTING EFFECTS. Really... I just broke down. The words I did not want to hear and scared me. Bascially, at this point we are looking at residual effect, but only God knows what that will look like. Her hands will most likely have some issues. I am praying that her brain and her swallowing will not. The doc was confident that this is either an autoimmune issue, metabolic, or something that requires more major action that what Hershey was taking towards it. We are headed back for another impatient stay when they can schedule her swallow study, MRI, MRA, and MRV all in the same day. This does require her to put to sleep and intabated again, which is super scary. The doc did inform me of a couple of courses of treatment including more steroids and another treatment that Kent and I have think about due to its adverse effects.
- That Brinton's body would handle all testing well
- Her swallow study would be passed and she would be able to take a bottle again
- Elijah, Hudson, and Kelvie would handle yet another change! They will be staying with my in-laws, but it is still another adjustment
- For my gracious in-laws who continue to jump in and support us in every way possible with our kids
I know God is bigger than this... I just need to keep reminding myself of that every day! I had a conversation with God this am in the shower because Mom's of small kids will understand that is the only place you can think! HA I just kept asking what do you want me to learn through all of this...
I also mentioned a little girl named Sage a couple of weeks ago... she is now with Jesus in Heaven... please pray for her parents as they walk some very dark days through this Christmas season.