Keely got to see a new specialist this week, Dr. Wright is a Physiatrist / Rehabilitative Medicine. a Physiatrist is a doctor of function. His focus is on things like, Keely's mobility. He upholds his reputation of being a wonderful doctor. He took his time with her, was very educational, and very hands on. He immediately started tweaking the chair that we have right now so she would sit better and help with her tone. He tested her whole body putting her in different positions, testing her spasticity (Spasticity: A state of increased tone of a muscle (and an increase in the deep tendon reflexes). For example, with spasticity of the legs (spastic paraplegia) there is an increase in tone of the leg muscles so they feel tight and rigid and the knee jerk reflex is exaggerated.. www.medterms.com). He wanted her to have an x-ray of her spine and her hips, he was concerned since she always leans to the right. We were there for 3 hours because x-ray took longer to get there but Dr. Wright came back from his meeting right as the test was done, so he just had us wait so he could review it and decide on a plan. Unfortunately, things were not normal......he showed me her hips have already started to curve to the right, her bones are not where they are supposed to be thus starting the deformity process. Her spine looks good right now but he said it is already showing a slight curve.
His plan for Keely: He is most concerned about her hamstrings, they are so tight, that is one of the things that is contributing to her hips curving, along with poor posture. He wants to do some injections to loosen them up and then put her in braces. He also wants to inject a little bit into her hand to help open it up. Then he will think about her feet and putting those in braces. He also referred us to a specialist he trusts for a seating clinic. We discussed the wheelchair we had ordered, and after he consulted with the specialist about Keely's issues, the specialist told him the chair we ordered is not gonna be enough for her especially on down the line. So, we have canceled our wheelchair order to explore other options and continue to pray about the situation knowing that God has been guiding us the whole way. Keely needs all the support she can get in a chair for secured posture and now we finally have some guidance in that area, Praise Jesus! Nick and I ask that you guys be in prayer about it as well, along with all of Keely's other ventures.
So we are really excited that God has sent Dr. Wright into Keely's life and we pray that he will be a blessing. Most of his patients have Cerebral Palsy so we trust that he is very knowledgeable in his field. Keely starts her first procedure of injections in February so be in prayer that all goes well and there are no complications.
So our precious baby did so well being at the doctor for so long.......and yes there's the barf bag again!
At 4 weeks old, Keely Skinner almost lost her life. Keely was rushed to the hospital with high fever and seizures. She had come down with a deadly form of Meningitis (severe infection located in the fluid around the brain) which then progressed into Encephalitis (which is a severe infection located directly on the brain). Keely continues to suffer from developmental delays, tremors and from a chronic seizure disorder, having multiple seizures every day. At two years old, Keely has severe physical limitations, she is still at the stage of a newborn 0-3 months. Through all life’s challenges, Keely remains to be the happiest, most loving child; inspiring and touching the lives of everyone she meets.
TINY KIDD....................BORN AGAIN
Tiny Kidd Hero
"Tiny Kidd," is a True Hero and a Blessing from God.
*Click on her name when you are done watching a video to see more videos of Keely on YouTube.
Friday, January 14, 2011
Monday, January 10, 2011
Goodbye 2010....Hello 2011!
I don't know about you guys, but 2010 felt like it flew by faster than ever. Every time we turn around another week has disappeared and so we begin another year....
Tiny Kidd is growing beautifully! Therapy is going well. Along with her tube feedings, we are continuing to do therapeutic feeds (which are: feeding her a few, small bites of food by mouth to try to train her how to eat, swallow, etc.). Her seizures, well.....still a work in progress. They've been increasing in number and in strength lately, so her neurologist in Texas has scheduled her for another inpatient video EEG for in February. Tomorrow she has an appointment with Dr. Wright (referred by her okc neurologist), to help with the stiffness in her joints and braces for legs & hands. And supposedly, her wheelchair has finally been ordered! This has been a 10 month long journey from the time we started demoing chairs; we had so many stinkin' hoops to jump through because of insurance...it was ridiculous! We are trying not to get our hopes up about it coming soon (cause each time we did, something happened to delay the process)....but secretly we are cheering & jumping for joy!
In closing up another year, we praise God for his one and only son Jesus Christ, for blessing us with precious Tiny Kidd and so many wonderful family and friends, and remembering loved ones we've lost . So from the Skinner family, we hope everyone had a very Merry Christmas, and we pray wonderful blessings for everyone in 2011!!!
Our Shining Star
Aint They the Cutest things you ever seen!
Christmas 2010
Tiny Kidd is growing beautifully! Therapy is going well. Along with her tube feedings, we are continuing to do therapeutic feeds (which are: feeding her a few, small bites of food by mouth to try to train her how to eat, swallow, etc.). Her seizures, well.....still a work in progress. They've been increasing in number and in strength lately, so her neurologist in Texas has scheduled her for another inpatient video EEG for in February. Tomorrow she has an appointment with Dr. Wright (referred by her okc neurologist), to help with the stiffness in her joints and braces for legs & hands. And supposedly, her wheelchair has finally been ordered! This has been a 10 month long journey from the time we started demoing chairs; we had so many stinkin' hoops to jump through because of insurance...it was ridiculous! We are trying not to get our hopes up about it coming soon (cause each time we did, something happened to delay the process)....but secretly we are cheering & jumping for joy!
In closing up another year, we praise God for his one and only son Jesus Christ, for blessing us with precious Tiny Kidd and so many wonderful family and friends, and remembering loved ones we've lost . So from the Skinner family, we hope everyone had a very Merry Christmas, and we pray wonderful blessings for everyone in 2011!!!
Our Shining Star
Aint They the Cutest things you ever seen!
Christmas 2010
The New Style Trend for 2011
In Loving Memory of April Gower
Feb 4, 1978 - April 3, 2010
Aunt April & her 'Apple Bits' 2008 (Keely- 1/2 day old)
We will Forever miss our April.....May you be at peace in the arms of Jesus
Therapy In December
Keely's First Laptop....Thank you Emily!!
Yes, her arm is in a barf bag....she loves it...we take it everywhere
(I promise, it's never been used ;))
........And She's Out.........
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