Super Miss G is doing great. Really great. As in almost fully back to normal. The blood transfusion was a success and we were sent home after just one day with Gwendolyn’s lips more ruby than we have seen in weeks.
I’m so sorry we are just posting now. I know that worries people. To be honest we have just been recuperating, counting our blessings, anxious, watching, and hopeful. It has been a rough summer of all seemingly unrelated events. After three years of no hospital stays, we’ve racked up three in one season. And we don’t like it one bit. We have been really, really scared at times and we have seen our stoic incredible doctors have unusual worry on their faces. But… (and please knock on a seriously enormous piece of wood)… it seems we may be coming out the other side okay.
We spent the weekend resting and marveling at Gwendolyn’s renewed sass and cherry cheeked coloring. GrandPa spent the weekend at our house and Gwendolyn loved the extra story reading and hand holding with him. On Sunday we all went out for a walk and we absolutely loved seeing Gwendolyn busy with her eyes noticing every bird and tree and making sure GrandPa stayed right by her side.
On Monday we had an appointment for Gwendolyn to see a pediatric cardiologist for the first time to have an ECHO and EKG done. This was planned before the emergency blood transfusion. With the extended period of high heart rate there was some worry about her heart. And, while still much is unknown, there is now some evidence of heart malfunction among SMA children. I had a pit in my stomach the whole time, but tried to keep Gwendolyn reassured that this doctor’s visit wouldn’t hurt. She was a champ and really rocked her super strength by being so patient during all the tests. And HOORAY — Gwendolyn’s heart looks normal, healthy, just as it should look. Hallelujah!
Then yesterday we went back to our pediatrician to check in and redo her hemoglobin count. And WOOT we have a 15! Yep, she bounced from 5 to 15 with the help of that Super Girl blood. Hallelujah again! We will be checking in with Dr. Abbott weekly for the next few weeks just to be sure this holds. Given the other test results though it really looks like this was just caused by a bad reaction to a strong antibiotic. She has never had any side effects from related drugs, so this came as a shock to everyone. Needless to say she will NOT be getting this again… big bold letters in her chart
Thank you all so much for your continued support, thoughtfulness, concern and love. We are continually humbled by your kindness and it truly makes a difference in our lives!
PS — Gwendolyn is doing so well that tomorrow is a special day for Super Miss G