03/04/2026
Ivydale was born February 26th 2022 via induction due to uterine growth restriction they decided to take her at 38wks. Everything was going smoothly until it wasn't. I was rushed into an emergency c-section I was knocked out. They lost her b4 we made it to the operating room lost me as soon as they put me under. They revived both of us. Thank God. Her apgar was amazing no extra stay for the both of us. Anyways Ivydale was hitting all of her milestones until she started to go backwards at 6mths so we went and started to get her tested got her into early intervention like our other 2 disabled babies. She started to refuse to eat foods and would only take a bottle. Still to this day she is on a liquid diet of a high calorie diet with pediasure. So far her swallowing is good. We saw genetics and this is where we found her genetic mutation which I also have it does cause childhood dystonia and I was 1 of the lucky ones to not get it but my baby Ivydale was the 1 less fortunate and developed dystonia this is where it gets hard. We just saw the specialist last week and we go back again this friday. Well know more soon. So far what we know is she'll get worse but no timeliness on when or what will go 1st usually its talking and walking her language has already regressed we have no words only hums, screeches and squeals. Shes walking and running bust starting to tip toe walk and starting to get a gate witch is pigeon toe or bow legged. Once we go friday ill update. Next test are 24hr eeg and deep brain stimulation surgery.
-mom
