We started our day off bright and early meeting with Ali’s feeding team which consists of a nurse, a nutritionist and a feeding therapist (OT). Ali hasn’t gained any weight this week but she is still in the 50th percentile weight wise. Although she did grow a bit lengthwise she has slipped below the 50th percentile for length but she is still above the 25th percentile. Generally babies with Costello Syndrome are around the 3rd percentile for height and length by Ali’s age so in terms of her syndrome she is absolutely huge!!! Imagine how big she’d be if we could get her to stop spitting up. As a group we decided that Ali is never going to bottle feed. We were given permission to start giving Ali tastes of solid food. We are just putting little tastes onto her lips and she licks it off. So far she’s tried apple sauce and peach yogurt. We give her such small amounts that we don’t have to worry about the “rules” for starting solids and we’re just supposed to give her whatever we’re having. The tastes of solids didn’t make a huge impression. She gagged once but other then that she just licks her lips and looks totally neutral. I guess it’s better then screaming her head off.
We also had an appointment with cardiology on Thursday. Ali had an echocardiogram and an ECG. She was pretty squirmy for the echo so the pictures of her heart were suboptimal but the cardiologist was pretty sure that her heart defects were not getting any worse. She held totally still for her ECG so it was of great quality and it also showed no change from her previous ECGs. Children with Costello Syndrome often suffer from hypertrophic cardiomyopathy (can cause heart failure) so the fact that her defects seem to be stable is fabulous news!!!
We also had the opportunity to meet with the hospital administration in regards to Ali’s overdose and Jason and I were both very happy with the recommendations that the hospital made and has implemented because of what happened to Ali when she was in their care. They have done a lot of investigating and put a lot of work into their recommendations. I will elaborate when I get my written copy in the mail.
Anyways, thanks for reading.