About Zane
This page will go into more detail about Zane's history.
In many ways, Zane is a typical 2 1/2 year old. He enjoys playing with his little brother, Ezekiel. He also enjoys watching movies while he is in his stander. Some of his favorite movies are Veggie Tales and Cars. He has a blue race car bed and his room is done in Cars stuff. He is so proud of that bed! Other things he enjoys include: playing outside in the dirt, riding in his wagon, listening to music and riding around Grandpa's yard in the RZR. Some of his favorite foods are: french fries from McDonald's (he calls them "num nums") ,spaghetti, and pizza, but his absolute favorite thing to eat is ribeye steak with a loaded baked potatoe! (Imagine that!) His dad builds engines as a hobby and Zane loves being around the engines and imitates the sound they make. He is a very sweet little boy and is also determined and hard headed at times (I think that's what has gotten him this far!)
He was born at 24 weeks gestation due to severe pre-eclampsia and HELLP syndrome. He suffered a grade III brain bleed at birth. Our course in NICU was fairly uneventful except for a few minor setbacks. Before we went home, he had an MRI of his brain which confirmed he has periventricular leukomalacia, or PVL. The neonatologist informed us that this, paired with his extreme prematurity and low birth weight, put him at a very high risk to have cerebral palsy.
Once we came home, we immediately started getting therapy for him. As the months went on, it seemed like he was not making any progress. We saw a developmental pediatrician when he was 9 months old. This doctor agreed that he was behind on his milestones but was reluctant to make an official diagnosis of cerebral palsy at such a young age. We went back for a follow up appointment 6 months later and not much had changed. This is when Zane was diagnosed with cerebral palsy, spastic quadriplegia. Aside from the ups and downs of the NICU, this was the most difficult news we had received. We have always believed that God is in control of this situation. I also am a firm believer that God has awesome plans for Zane!
Zane has been to Shriner's Hospital for his orthotics and we have seen a neurologist at Riley Hospital in Indianapolis for Botox. He is also on medicine to help relax his muscles. All of these treatements, combined with developmental, speech, occupational and physical therapy have helped Zane come a long way. One night, while searching the Internet for treatments for cerebral palsy, we came across the Xcell Center. We have been in contact with them as well as other parents who have had this procedure done. We have heard lots of amazing stories and have faith that this procedure would benefit Zane!
For those interested in the procedure, this is a brief run-down of what will occur:
Approximately 150-200 mL of bone marrow will be taken from Zane's hip bone via needle. At this point, the bone marrow is taken to the lab so they can isolate the adult stem cells. Once the stem cells are ready for administration, they will do a lumbar puncture (spinal tap) and inject the stem cells into the cerebrospinal fluid. There is no risk of paralysis due to the fact that where they do the lumbar puncture, there is no spinal cord. The cerebrospinal fluid circulates throughout the entire spinal column including to the brain. The stem cells then travel to the damaged area of the brain to help heal that portion of the brain. Both procedures (bone marrow collection and spinal tap) are done under general anesthesia.
This is by no means a "cure" for cerebral palsy as there is no cure. Our hope is that it will improve his quality of life in areas such as: motor skills (dressing himself, personal hygiene, being able to get himself out of bed using utensils, sitting up unassisted, crawling, walking etc) and speech. We also hope that it will help him to be able to keep up with his peers, help daddy in the engine shop, and overall improve his self esteem and self confidence. We are very excited about this new opportunity! Please hep us reach our goal!
