This blog is a very personal perspective of life from the mother of a special needs child
Girl Scouts at Chimney Rock
Faith and two "High Tiders" from the OBX
March 26, 2010- Purple Day for Epilepsy Awareness
Faith and my dad..
"I am begining to learn that it is the sweet, simple things of life which are the real ones after all." -Laura Ingalls Wilder
Our little Ladybug
About Me, Faith!
Hi, I am Faith Ann Hudson. I am 7 yrs old and live in SC with my mom, Candace. God gave my name to my mom when she was just 6 weeks pregnant with me, she saw a sign on a church called Faith worship center and knew that God wanted her to name me Faith. I have cerebral palsy, epilepsy and other developmental delays but I am a happy and loved little girl!
Thanks to my friend, Amy, for the cool buttons!
About Faith's type of Cerebral Palsy
Spastic diplegia, historically known as Little's Disease, is a form of cerebral palsy (CP) that is a neuromuscular condition of hypertonia and spasticity in the muscles of the lower extremities of the human body, usually those of the legs, hips and pelvis. Doctor William John Little's first recorded encounter with cerebral palsy is reported to have been among children who displayed signs of spastic diplegia. This condition is by far the most common type of CP, occurring in almost 70% of all cases.
Today, Faith got her new Snug Seat Crocodile reverse walker! It was in a couple of weeks ago but a piece was missing so it finally got fixed and we got it. Faith's PT met us there and examined it for her satisfaction and ours! Thanks Ms. Erin! This product is the next step after the Gator gait trainer. It is a good bit larger than the gator but it much lighter weight. I can pick it up with one hand! It also folds up, which is wonderful when you are transporting huge wheelchairs and walkers and children all in the same SUV! LOL! The design is very pleasing to the eye... very modern and sleek with cool, curved front legs. We were lucky that Faith did not need all the extras that she needed in the past on her old gator...on this one we just needed the hip stabilizers and strap to keep her in. It is a very simple design but practical and sturdy. The hand bars can be rotated around and up or down to accommodate smaller/tighter children. Faith needs it to be close to her because she has trouble when she is walking and they go out too far. I also like the large tires in back with a brake to keep it from going backwards. On her Gator, it had these metal wheels that were supposed to do the same thing but they wore out like crazy. We had to keep replacing them, which was no easy feat! The Crocodile also has anti tip bars, in the back so she can't tip back. Faith was very excited about it, as she loved her Gator, and hasn't been able to use it for over 6 months. She wanted in so....despite NO NO's from the doctor...(cover you ears, any doctors or therapists out there!) we let her stand in it while we made the necessary adjustments. She did not appear to be in any pain and she was actually trying to take off in it, leg splints and all! LOL! I brought it in when we got home and she was signing "please" over and over to get in. I think when she gets these casts off, she is going to do some real walking! SO HAPPY! We also had eye doc appointments, yesterday, and they want to do surgery soon. I stalled for a while but she did say it needed to be done. Also Faith had another seizure, this morning, while Carl was feeding her. It was a short one, only about 30 seconds but it always puts me on edge. I have been paranoid all day. We go to the neuro, next week and I am going to sit down and have a pow wow with him. We have doubled her meds in the last 12 months but her seizures are still breaking through. Maybe it's time to try a different med...I don't know. We are using so much now...over 730 mls a month...two HUGE bottles. Please keep Faith in your prayers, we need all we can get. It seems like we get lulled into a false sense of security and then the bottom falls out, in some way. It also worries me b/c of the tumor. No one seems to want to repeat an MRI even though she has had about 5 breakthrough seizures since May. We might need to push for that too.
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comments:
Anonymous
said...
Faith and you are on my daily prayer list.
She does look good and happy in her new walker.
I really appreciate you posting about the design features you like and the differences in this one and the one she outgrew. Other parents can really benefit from that information. Those differences show progress that Faith has made. Barbara
I am mom to one very special little girl for the last 7 years. Before my daughter, I was a store manager of a sporting goods store for 5 years. I love the beach but live in the mountains. I am also a juvenile diabetic diagnosed 14 years ago.I have always loved animals. My current brood includes a pom. mix and a very large standard poodle. My life is ruled mostly by doctors appt's, therapies and specialists. Did I mention that we are just beginning our first year of homeschooling? I am kind of simple girl at heart.I appreciate the little things in life. Most importantly,I am a born again Christian.
2 comments:
Faith and you are on my daily prayer list.
She does look good and happy in her new walker.
I really appreciate you posting about the design features you like and the differences in this one and the one she outgrew. Other parents can really benefit from that information. Those differences show progress that Faith has made. Barbara
WOW,look at that nifty thing. We are waiting on a stander for Jude. Go Faith, you look so sweet!!!
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