Because I have been wordless on my blog, I have missed some updates.
Gabriella had a swallow study done last month, because it was a mommy vibe of mine that her coughing and choking issues were related to her stroke. Sure enough, she has a weak swallow reflex. Her trigger to close off her lung region when swallowing is delayed and causes food and drink to pool right at the opening to her airway. She is successful in clearing out what is there but runs a risk for aspirating! We have some not so easy techniques to practice and help the process. One is always sitting while eating or drinking. Hard for a girl who is VERY active! And the other is no talking for 10 seconds after swallowing. Even harder for a girl who is VERY talkative!We aren't sure if this will improve or not, because of the muscle damage done to her body from stroke, but as always we are hopeful.
Clinic appointments are going well for the most part. It is all a balancing act with medications, but we are close to target on everything! She is growing perfectly and we do not have many concerns at the moment. Her next biopsy will be in February, as we wean her down from steroids and watch what her heart tissue says to that.
School is going smooth. Her school has been amazing working with her IEP and ensuring that she gets the extra help she needs on reading and writing. She is a wiz at math, and is quite the little gossip girl. We have dealt with minimal cootie issues, for which I am so thankful!!!
PJ is doing fantastic as well. He is in dance class (hip hop) and still plays Tball. He is a smart little guy with more daily energy than I will have in the remainder of my lifetime.
Thanks for checking in!!