Kaiya at LBI

We just got back from LBI, Grammy and Pa rented a place for a week so we took the crew down for a few days. I will post some pics and vids shortly

Friday June 26 - Another visit to Hospital

We had an unexpected visit to Hackensack Ped. ER on tues. Kaiya woke up, clearly in pain and she could close her mouth. a quick visit to our pediatrician, Dr. Shor, and then a trip to the ER. We felt it was dislocated (TMD) but we were afraid it might have been something neurological. After a series of x-rays, it was definitely out of place. Kaiya fell asleep with mom on the hospital bed. The dentist came in and was happy to see Kaiya asleep. While she was sleeping her jaw slipped back into place because she ws finally relaxed.......... Through it all she never stopped smiling,,,,,,she is the best!

Kaiya is taking steps- Stem Cell therapy

Could Stem cell therapy be next. I am using this blog as an outlet to reach out to others.

Kaiya is so determined. She regularly gets herself up and takes 5-10 steps at a time. If someone comes to the house she gets up immediately to show them what she can do. We went to Montefiore Childrens hospital to see an ENT. Her palate is anotomically correct, her feeding issues are with her muscles in the mouth and throat working slowly or not at all. The problem clearly originates in the brain. Her damaged brain tissue is causing the problem. We are looking into Stem Cell Therapy. We didn't save her cord blood and I feel AWFUL for not saving it. At the time my wife was pregnant I looked into saving the cord blood but all the literature at that time suggested there was limited use of the cord blood, factor that with the cost we opted against it. Now, I wish i had, I feel terrible.....We did save her younger twin brothers cord blood. If anybody can share their experience or what they know about using sibling cord blood.

First Post

I have created this blog for family, friends and to inform people about Kaiya and her daily achievements. I hope to inform people about Conductive Education and how it has changed Kaiya's life.

For those who do not know her, Kaiya is my daughter, she is just over 4 years old and she has Cerebral Palsy (CP). According to the hospital where she was born in Ridgewood, NJ she had a stroke while in uetero. After 6 weeks at that hospital and many different and wrong diagnosis, not too mention the numerous hypoxic events at that hospital, we demanded she be transferred to either Children's Hospital of Philadelphia (CHOP) or Morgan Stanley's Children's Hospital of New York Presbyterian-Columbia. We were able to get into CHOP. At CHOP they looked at the records from Ridgewood and literally laughed. They started all over from the beginning. They discovered she had PVL, which is caused from hypoxic events.
We went home after 11 days. Kaiya got a g-tube (Bard) on her 2nd birthday. She currently does not speak or walk, although she has started to take steps. See the videos on the page to see her progression. Kaiya has gone through the gamet of therapies and the one that has had the most influence has been Conductive Education. For now checkout the videos on this page and also check out the other videos on Conductive Education....