Update on Ally’s 3 month follow-up from spinal surgery appointment in Cincinnati — ALL WENT WELL and we got home early this evening. Ally did a sitting up X-ray (which is a bit tricky since she has no muscle tone or head control but I wanted to be sure everything looked good in a sitting position). Dr. Sturm said everything looked really GREAT!! Her sitting X-ray went from an “S” curve in the 90s before surgery to 50s. Laying down estimate was while in hospital was from 70/80s to 40s (laying). He said the curve should be about the same laying or sitting up with rods, so I will see what the next one is laying. No matter what, the surgery was a HUGE SUCESS!!! He said she can be experiencing a little pain when sitting for long periods since she is only 3 months out but things are looking great and he saw no specific cause of pain, so some whining can be attitude too. He was also hopeful that the ability to urinate on her own will return with more time since it is starting and she has no trouble with her bowels. Ally is his first SMA child with long term urination complications, but he has had other patients experience this. It was neat that a surgeon from Israel was there shadowing Dr. Sturm. I wish the docs from Chicago would expand their minds on doing surgeries for type 1 SMA kids.
We also saw Dr. Stenger in endocrinology to check on Ally’s bone health. She has gotten pamidronate infusions in the past after having 3 fractures around the age of 5. Her DEXA scan scores were actually pretty good for an SMA child who does not bear weight (-2s) so we will repeat the Dexa in March and just keep a good eye on her bone health. If we do infusions in the future, it will be Zometa.
I cannot give enough praise to Ronald McDonald House Charities of Greater Cincinnati. We were soooo lucky to stay there two nights (across the street from the hospital). We had three donated meals and snacks there, comfy beds, a place to rest between appointments, balloon art, a walk in their outside area to calm Ally last night, networking with other families….. We made a small donation for our stay and I hope to do another Thirty-One fundraiser soon to pay it forward again.
Our next trip to Cinci will be in 3 months September 26-28th, then six months later in March and then annually.
I’m going to post all our pictures from this trip and xrays in case anyone missed the few I did. Hope this helps other SMA families and also our friends and family understand more about Ally’s trials and successes!! Thank you for everyone’s support!!!
Angel Ally Blog - SMA Type 1 