Today was our big meeting with the palliative care doctor and developmental pediatrician.
We were a little anxious about it, and I felt like I was going to die getting there and back in such pain. I still hurt so bad! I can stand and breathe, and sometimes walk and breathe, but not much at a time. And certainly not while carrying a toddler.
We got lots of good news today!
First and foremost, she finally hit the growth chart! She is 21 pounds at 21 months, and we are thrilled. This is huge! It’s largely in part due to the ng tube, but if we can keep her drinking then maybe she can maintain the weight and avoid the gtube all together. We are so grateful for the speech paths that have worked so hard with her these two years!
Secondly, her heart looks better, which is great news, and an answer to prayer. She is on oxygen less and less, and even at school seems to manage her airway behaviorally – taking breaks and rests when she needs to do so. She is still very easily fatigued, but they think it is muscle weakness from not having been able to do all her gross motor stuff all this time. They think she could catch that up with more time and practice, and get stronger!
How amazing is that?
We also got confirmation clearance to dismiss all the specialists now that we are focusing on her as a whole, and just let her have the time she needs to keep healing and keep getting stronger. This is huge for us, in the context of the last two years, and means we don’t have to fight the ones who won’t listen to us or be confused by those only treating parts of her. We could not be more thrilled!
Naturally, we took her to the temple to say thank you!
Barrett and Anber were at school, but the second graders also got a temple visit, so that was lovely.
It was also a special day because it was Kirk’s birthday. He got new scriptures as part of getting baptized next week:
He also got a new bike, which he knew was coming because the second graders have figured out everyone gets the same birthday present all year long, and James Mission donated new bikes for all the kids’ birthdays this year. We teased him about it all day, and finally just told him there are no new bikes in the house. We obviously keep all the bikes in the back yard, and he knows that. He ran outside, and there it was waiting for him!
It’s a special bike for cerebral palsy, with a training wheel only one on the left side and a special grip that wraps his left hand to the handle bar. He is so excited!
We love this little guy so much!