I know, we didn’t update yesterday. Avery had a great day though.
It was just busy (she and sister visited another set of grandparents that haven’t seen in months) and we didn’t get any photos.
Plus, we were simply relishing the moments and didn’t think about even updating until late.
Today she’s feeling more withdrawal symptoms.
It takes about 48 hours to see symptoms after changing her dose, so the way she’s feeling today is right in time.
She’s anxious about sleeping and has been sad again.
Although she has times of contentment, there are haven’t been any smiles today.
We did see some dancing when her favorite Super Simple Song (When the Band Comes Marching In) on though!
It’s not as bad as has been before, but she’s definitely not feeling her best today.
For reference, she was on 1.0 mL when she was discharged.
They wean goes down 0.1mL each week. She’s currently at 0.6mL.
It’s a slow wean, but still challenging.
Hopefully, she’ll start feeling better soon.
This week she only has one clinic day rather than three, but she does have an early Physical Therapy appointment tomorrow.
That should be the last therapist to start making house calls. She currently has Speech and OT, as well as a nurse.
It takes a team to help get her well post-transplant, and we’re so grateful for the one she has!
