08/23/2025
Our sweet girl has had a busy busy couple of weeks!
She has been an absolute rock star for every bit of it! We have been booked full basically everyday with appointments and several out of town Dr visits as well.
Speech therapy with the vitastim is going great and CK actually loves those appointments because she gets to eat all the different foods and play with all of the toys the entire time. She is completely unbothered by the stimulation and we are already seeing lots of great progress. I feel so fortunate we have this program available right here close to home so we can take full advantage of it for her! The more I’m learning about it I have found out it is not readily accessible in most areas. We are so lucky it is offered right here and home and things fell perfectly in place for her to start immediately without the 6-8 month wait we were expecting! (Just another one of the times we know Gods hands are all over our girl ❤️)
Physical therapy is going great too! We are right at 6 months of treatment and she exactly where she wants her to be! Charley is sitting up great, trying to get on hands and knees to crawl and is pulling herself up to sitting with very minimal help!
We had our follow up with the Down Syndrome Clinic last Thursday and overall it was a great, positive appointment! When we are at this appointment we see 4 different clinicians. Physical Therapy, occupational therapy, speech therapy and lastly we see our genetic doctor. All of them were so pleased with her progress and how amazing she is doing! We are growing, developing and absolutely crushing all the milestones they set for her! The Dr even moved us from a 4 month return to a 6 month she said there is not one thing I can recommend therapy/proactive wise you guys aren’t already doing ❤️
She did set us up for another hearing screening to get established at Vanderbilt and for Charley’s first ophthalmology appointment.
We had our audiology appointment this last Thursday and she did fail the hearing test. She failed it also at the hospital when she was born which is not uncommon at all for a newborn to fail them, however, we had one in March that she passed and then this one she didn’t. So we are now waiting for another appointment with an ENT where they will go in in-office and remove any wax buildup they can get and we will go back over that same day to audiology again to retest.
The audiologist did recommend we go ahead and discuss tubes for Charley and if the ENT agrees she would benefit from them we will repeat the hearing test while Charley is sedated for that if not and she fails the next one again we will sedate her to do the more thorough one after that. Not exactly the outcome we hoped but with her passing it just a couple months ago and the fact she responds to sounds and voices no one seemed concerned other than the possibility of tubes being needed now or not.
We will go back to Nashville Wednesday for our ophthalmology appointment then the first week of September is our cardiology appointment for follow up and right behind that she will be seeing the endocrinologist again!
Overall she’s absolutely crushing everything we throw her way! This girl knows how to put the work in and it’s showing in everything we test her at! Shes growing and her own little personality is starting to shine through and it’s my favorite thing to see ❤️
