I have been trying to figure out how to succinctly get this all out and landed on a month by month update. If you are new here, Hello! We are so glad to have you! If you would like to read our story to find out how we got where we are today, you can find that Blog post here.
In October, I talked about how Brayden was recovering beautifully from his eye surgery for bilateral cataracts. He also started clonidine for sleep (more restful vs. restless) and I am happy to report that is working great! Brayden also started OT and PT services through VCU.
At the end of November, we got the call that we were off the waiting list and Brayden picked up Speech Therapy through VCU as well. We made some calls for ABA and happily decided to go with AHA Therapeutic and Behavioral Services.
January was ANOTHER busy month!! First and foremost, Brayden was evaluated for ADHD. We’ve always known Brayden had ADHD but we were written off time and time again because of his comorbid diagnoses. If you are in our direct circle, you know that we didn’t want to medicate Brayden as the thought of him not being able to tell us how the medication made him feel was terrifying to us. You would also know we got him a medical marijuana card to start a more natural attempt to help with ADHD symptoms along with everything else. After many failed attempts/no impact and seeing how the clonidine had greatly improved his sleep, I reluctantly made an appointment to discuss medication. After jumping through many hoops, we got an official ADHD diagnosis and Brayden started Ritalin. We are EXTREMELY HAPPY to report this has been an amazing transformation for Brayden. Where Brayden was only able to focus on one activity for 2-3 minutes, he is now able to participate in an activity for 15-45 minutes! Last
in January, we had a check up for Brayden’s recent diagnosis of scoliosis and that has not progressed!
In February, Brayden had an assistant technology appointment and was approved to receive his own ACC device (not one borrowed from the school). It will be delivered in May. Brayden started working with a new PT at VCU who has shed light on some new developments and about Brayden’s treatments for pronation of his feet. We were headed back to Boston Orthotics to get fitted for new SMO’s and an AFO for his right leg. We were also referred to Richmond Hope Therapy, an intensive therapy where Brayden can receive 2-3 hours a day of OT, PT and SPEECH for 3 weeks! He was evaluated and accepted into the program with the understanding that there is a pretty lengthy wait list!
March….we had an urology appointment to make sure that there was nothing medically wrong with Brayden to get the all clear to start potty training with ABA. Our ABA therapists started observing and building rapport with Brayden during the month of March as well. Brayden finally got into genetics and we have sent those labs off and will get results hopefully sometime in April. We switched pediatricians (for all the right reasons) and we added orthopedics to our team to monitor his growth and scoliosis. We also learned that Brayden has fallen off the growth chart in height and weight! We have a plan in place and are monitoring closely.
April: We have received the results from CMA genetic testing and they came back negative for any extra chromosomes and negative for any missing/deleted copies. Brayden's dad and I will now get genetic testing so they can complete the WES genetic testing. We won't get those results for 2 to 3 months.
Today we had our long awaited Neurologist appointment to discuss next actions for a MRI to see if our suspicions of stroke in utero or at birth may be the cause of weakness in the left side of Brayden’s body! That will be scheduled in the upcoming weeks along with an appointment for Brayden to see a Neuropsychologist.
**Please know that we wouldn’t be here without the help of the CCC+ waiver! If you know of anyone who may benefit from the waiver please send them our way so we can help other families get their children the benefits they deserve!
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