Our file has been turned over to the review department for eligibility. We do not have the neuro-psych eval, as of yet but that process begins on August 23rd. We made sure that we made an impression on the gate-keepers and the decision makers. Grace wore her new sporty orange Adidas and a shirt to match. I did my part by letting her light shine and ensuring that all had a face to put with our names.
Now I wait for them to contact me (I will be calling Monday morning to check-in) for the full evaluation appointment. They have room in the program if we decide that is a better place for her and of course the least restrictive environment. I am trying to focus on the peace in the fact that we have an incredible private pre-K and a private therapy location too.
Please pray that we are approved for eligibility and that I continue to have peace and not let my flesh and fear cloud it.
Thank you so much have an incredible weekend. Audra
Friday, August 13, 2010
Thursday, August 12, 2010
Big prayers requested for tomorrow
So tomorrow morning we have a hearing test at 8:30 am for Grace and then an appointment at 9:30 am with the public school system.
Our goal is to pass the hearing test, will be shocked if she does not. Get an evaluation ASAP. I spoke with the necessary people and they have instructed me to give their name and say that they want an evaluation.
I am getting all paperwork needed together and copies now. I just pray that the OT evaluation is ready before 5pm today.
So specific prayer request that was get the evaluation ASAP to get Grace in the 'least restrictive' environment to help her reach her full potential and to especially help with her regression and recoupment issues from the past couple of months. This has been really really hard for me because I have really tried a lot!!!
Also, pray that we hear God's ultimate discernment/wisdom as we make our decisions as to what treatment to do next and the financial means to go forward with recommended treatment protocols.
Thank you so very much.
Our goal is to pass the hearing test, will be shocked if she does not. Get an evaluation ASAP. I spoke with the necessary people and they have instructed me to give their name and say that they want an evaluation.
I am getting all paperwork needed together and copies now. I just pray that the OT evaluation is ready before 5pm today.
So specific prayer request that was get the evaluation ASAP to get Grace in the 'least restrictive' environment to help her reach her full potential and to especially help with her regression and recoupment issues from the past couple of months. This has been really really hard for me because I have really tried a lot!!!
Also, pray that we hear God's ultimate discernment/wisdom as we make our decisions as to what treatment to do next and the financial means to go forward with recommended treatment protocols.
Thank you so very much.
Wednesday, August 11, 2010
PART 2
If the surgery is recommended Dr. Bruce with Denise the NP, do the percutaneous heel cord lengthening procedure, which is less invasive. No cutting, ie. long scar.
Also, during the appointment it was mentioned by the NP that Grace would need physical therapy for life and a good amount. I discussed the results of her recent PT evaluation and she the NP agreed with me that Grace should be having PT three times a week so we have a Rx in hand for that and the PLS AFO. The diagnosis codes that were used are
343.1, congential hemiplegia
727.81, contracture of tendon
Denise also feels that will all of the PT and protocols and our dedication that Grace should be able to play any sport she wishes and do well. She gave an example of a woman that was in NP classes with her and for years no one knew that she had CP, hemiplegia or right diplegia like our sweet baby Grace. They only noticed a slight limp after a 20 hours work-day at the hospital, and yes this woman finished top of her class.
Prayer request is please pray that I can be steadfast, detailed, and efficient in getting the KBW paperwork together to get an approval. We so need this for Grace to do these therapies and treatments for now and for her future. Thank you so very much for your prayers!!!
I have tried for 20 minutes to get this post brighter, I am clueless and going to bed it must be an eternal glitch! :-) Good night, sleep tight!
The Latest with the Edwards
So as quickly as Grace started to walk on her heels, she stopped. Yes, it would be great to know the exact reason why she started and then why she stopped. However, this is not heaven! So I am sure it is a combination of the brace, her reminding herself, the Feldenkrais, our PT exercises and so on and so on as it always goes. We kept up the Feldenkrais but had to stop in August simply due to financial reasons. So of course I always have another plan.
Last week Grace Marie had a PT and OT evaluation. Got the results back on the PT yesterday. So in a nutshell, she is delayed and the Peabody testing, according the the therapist had her age as 4yr. 11months, not 5 yr. 1 month. She came back in the 25th percentile in all testing areas. She was tested for about 45 minutes with her AFO brace on. PT recommended therapy once a week. We will get the OT results sometime tomorrow.
Had a much anticipated appointment with the NP at the orthopedic surgeon's office. The NP, Denise, reviewed the MRI of her head and spine from November of '09. She stated that she did not want to do the surgery at this point, but wanted to do another round of BOTOX and casting. They administer this differently than at the Neurologists office. BOTOX is given under general anesthesia, with a mask no IV. Therefore, the patient is not scared out of their minds thinking someone is going to put another hole in their leg, yes, Grace's thoughts, every time we go to another apt. They can get the perfect location, and then the patient is relaxed and the leg can be placed in the proper flexion to have the cast put on. The cast will be below the knee like before and she will wear a brace to ensure that her leg is stretched out while sleeping so the hamstring does not get tight, like before. This will also give the proper stretch. The cast will need to be on for two to six weeks. Then wait and see for up to four or five months. Each person reacts differently to the medication, casting and growth spurts, etc.
Then another evaluation is done to see if this needs to be repeated. If so just one more time. Then surgery if needed, and only if needed and their goal is only one surgery.
We need to get her another brace and or ankle foot orthotic AFO this time but another kind that she would like her to try, PLS, Posterior leaf spring, or brace within the next month if possible.
Here is a great article studying the different types of AFO's and the areas of improvements.
http://gait.aidi.udel.edu/gaitlab/gcma/info/abstracts/P29.abs20111.pdf
http://emedicine.medscape.com/article/314838-overview
Another great article giving practical ideas for use of which type of orthotic for our main concern which is equinus, or toe walking.
http://www.fillauer.com/education/ED_afo.html
Last week Grace Marie had a PT and OT evaluation. Got the results back on the PT yesterday. So in a nutshell, she is delayed and the Peabody testing, according the the therapist had her age as 4yr. 11months, not 5 yr. 1 month. She came back in the 25th percentile in all testing areas. She was tested for about 45 minutes with her AFO brace on. PT recommended therapy once a week. We will get the OT results sometime tomorrow.
Had a much anticipated appointment with the NP at the orthopedic surgeon's office. The NP, Denise, reviewed the MRI of her head and spine from November of '09. She stated that she did not want to do the surgery at this point, but wanted to do another round of BOTOX and casting. They administer this differently than at the Neurologists office. BOTOX is given under general anesthesia, with a mask no IV. Therefore, the patient is not scared out of their minds thinking someone is going to put another hole in their leg, yes, Grace's thoughts, every time we go to another apt. They can get the perfect location, and then the patient is relaxed and the leg can be placed in the proper flexion to have the cast put on. The cast will be below the knee like before and she will wear a brace to ensure that her leg is stretched out while sleeping so the hamstring does not get tight, like before. This will also give the proper stretch. The cast will need to be on for two to six weeks. Then wait and see for up to four or five months. Each person reacts differently to the medication, casting and growth spurts, etc.
Then another evaluation is done to see if this needs to be repeated. If so just one more time. Then surgery if needed, and only if needed and their goal is only one surgery.
We need to get her another brace and or ankle foot orthotic AFO this time but another kind that she would like her to try, PLS, Posterior leaf spring, or brace within the next month if possible.
Here is a great article studying the different types of AFO's and the areas of improvements.
http://gait.aidi.udel.edu/gaitlab/gcma/info/abstracts/P29.abs20111.pdf
http://emedicine.medscape.com/article/314838-overview
Another great article giving practical ideas for use of which type of orthotic for our main concern which is equinus, or toe walking.
http://www.fillauer.com/education/ED_afo.html
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