This site is to keep family and friends updated on the medical adventures of Ethen and Addyson.
When addyson was first born we were told she would have some medical issues but no one could tell us what the extent of her issues would be. She was later diagnoses with febrile seizures, periodic fever syndrome, no tear glands, asthma, and severe gerd. She was in a clinical trial at NIH for the fever syndrome, but recently was pulled off fall clinical trial meds due to sever GI problems. It took over a year to diagnose Addyson’s GI problems, but it was ruled that she needs a partial colon resection and cecostomy tube insertion. She had this procedure in OCT of 2017. They removed 30cm of her sigmoid colon and was able to make the end to end colon connection. This is more than they had planned to take, but they said overall her colon is not that great. Since surgery we have been doing daily flushes and venting with no real success to date. We have had constant follow up appointments and a few other specialties have been added to include ortho and genetics. Genetics is back on her case to see if we can find the top level disease name that covers all or at least majority of her medical issues. We are hopeful but aware that the chances of this are slim. (their words, not mine).
To see a video on her surgery click here: https://animoto.com/play/8uc97QWcesk5nzx8WLloxg?autostart=1
Ethen has Autism, Adhd, Ehlers Danlos (type 3) and DMDD. He was diagnosed with ASD at 27 months old from KKI. Since then, he has participated in OT, PT, Speech and language therapy, Social skills groups, ABA therapy and more. Around age 5 he was diagnosed with joint hyper-mobility and low muscle tone, we have continued PT to try to improve strength. He plays on a special needs hockey team called the Baltimore saints and we are looking into some Special Olympics activities.