Just the facts:
Have a 2nd opinion with a ped. neuro. in November, yes, this is the earliest apt. she is the expert in CP so we are more than thankful to wait.
In February of 2011, we have an apt. with a developmental pediatrician, who got into medicine with CP as his focus. Yes, this was the earliest apt. and as you can imagine the cancellation rate for him is less than 2%. We could see him earlier at his private practice, however, they do not take insurance and I cannot convince our insurance company to pay at this location due to the time difference. It would be just for the 1st visit $950.00 out-of-pocket. We so wish we could do it but we cannot.
We will not be seeing the ped. ortho. achilles release is not in her future! We will try other things first because that is a decision with a lot of permanent and 'domino effect' conditions for the rest of her life.
The great news, while I am holding my breath is that I found a new 'type' of therapy for Grace to do in the meantime. It is called the Feldenkrais Method. I have heard that this is by far the BEST therapy for CP patients. I am not going to try to explain because I know that I will not be able to do it justice. The man who created it Moshe Feldenkrais wrote several books and his title to one book, The Elusive Obvious (aka, Basic Feldenkrais) sums it up. It is so easy that it is hidden! This therapy is also used for sport injuries, etc.
Well, we are very excited because the first lesson is tomorrow! I am trying to contain my excitement but I am so happy that we are doing something. I just hope and pray that the Botox does not hinder any results that she can make early on. Every time I look at Grace Marie's calf, reality sets in. She has great calf muscles from the toe-walking but since that Botox there is not muscle definition at all.
Swimming is going great. She is having trouble kicking but that is to be expected. Hopefully, Feldenkrais will help with that too.
I would love to hear your thoughts and as always thank you for your prayers and all!!!
I want to support your choice in finding the Feldenkrais Method.
ReplyDeleteI so vividly remember when I watched a video of Dr. Feldenkrais work with a young boy with CP, I cried. As a PT, I had seen so many sessions when the client was in pain or distress in their therapy, this was totally different. The child looked like he was engaged in play. The results were amazing, the parents were contemplating surgical release of his adductors (commonly done from spasticity of the groin muscles). Dr. Feldenkrais taught the boy to understand how he was triggering the spasticity through guided therapeutic touch with his hips and pelvis. All the while interacting with the boy in a non threatening way. His hips relaxed and he did not have the spasticity at that time. This work has also been adapted for animals and often you see the same types of responses. Placebo doesn't work with children and animals, so it is always interesting. Best of luck to you and your family.
Thank you so much for your comment! It does wonders for us Moms to have extra support! Please keep following our updates.
ReplyDeleteAudra, I am the Mama of two children with special needs. My middle child has multiple diagnoses (High, high functioning autistic, OT delays, psychiatric issues). What I have learned it that there are simply SO MANY decisions to be made and so many choices - - often too many! What I try to do is research options, pray about it, make a decision and don't look back! Now, if it is not working you go back to revisit it, however trust that "Mama's instinct" that is God-given and reliable! You are doing a great job! Your biggest responsibility is to love that precious girl and raise her up in the way she should go....you are doing that! I have also had to wait an obxnious amount of time for appointments. In hindsight, it is clear why God had us wait. He is with you, friend, and loves you all so much! Take Care, Heather
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