July 2006
Savannah recovered very quickly from her scoliosis surgery of Oct 05. I believe she was back in school within two weeks. Savannah’s strength and will power never cease to amaze me. She is an incredibly strong little Spirit.
She has already gone through some pain management for muscle spasms after the surgery which included Botox injections in her leg muscles, and physical therapy. She will soon have another round of injections and will start a weekly regiment of physical therapy once school starts this next semester. She was also put on small doses of Diazepam (2 ccs morning & 2 ccs afternoon) for the relaxation of the muscles. This has also helped with her small seizure twitches, and she has no need for any other medications at this time.
I am a single mother, and continue to take care of her (my full time job) alone without hired help. She is now 58lbs. and 4’8” tall. She still does no more than a 3 month old baby even though she will be 10 years old this Sept. 06. Savannah’s father, Steve has continued through our two year divorce to take her every other weekend and one week at a time for Spring Break and a Summer visit, while I took a couple of vacations/breaks. He is very involved with her care, such as her baths (which is the one thing that I cannot do alone) and taking her to Dr. appts. Etc.
We have been on the list for MDCP and CLASS since 2001. We are now number 340 on MDCP which is getting very close to getting help based solely on Savannah’s income which is 0.00. These two programs are the only two in Texas that do not consider the parents income, and the only ones that we would qualify for. Thanks to a very helpful mother that we met at Children’s hospital we learned of a program that can speed up this process for money for Respite and all other expenses called “waiver Rider 28.” This program is not publicized, so it takes a phone call to the MDCP Social Worker for your Region. You must actually ask about this Rider 28, or you will not hear about it, and you must ask for a home visit to evaluate your daughter, based solely on her income and needs. You can receive up to $25,000 a year to be used only for respite. Savannah qualifies for the maximum amount for her extreme needs. The second benefit is that she automatically qualifies for Medicaid paying for anything insurance does not; including pediasure, diapers and DME It is to keep the children out of nursing homes and allow parents to continue care at home (where in my opinion they should be) with this benefit of monetary help. We have a study & home visit on July 18th, 2006 to start this process.
Another source of help in Texas is called SPED, and it is money from the school district also helping to keep the child at home and help with respite care refunds. Contact your school admin office and ask for this benefit for respite care refunds. I accidentally heard about this only lately (after 9 years) from a school employee, or I would not have known about this benefit either. It too, is not publicized. I hope that I have helped someone with the info that I have recently learned myself. I do not know if this is State, or if this is USA Federal benefits, so you just need to start asking about these programs where you live.
Love and Blessings to all Aicardi Syndrome girls and their parents,
Deborah Samuels- Mother
Steve Samuels-Father
*Photos by Nancy Whitworth of Austin, TX
09-21-2008
