They have a wish list for musical instruments, archery arrows, soccer nets, bedding for twin size beds, pillows, art supplies, golf carts, puzzles, costumes, board games, Gift Cards, beds, (Wal-Mart, Target, Lowes), Paint balls and CO2 cartridges. They also have an "Adopt-A-Camper" Program. The program covers 9 wonderful Camping programs for children with Spina Bifida and Orthopedic Conditions, Cerebral Palsy, Developmental Disabilities, Asthma, Autism, Sickle Cell, Hearing/Speech/Vision Impairments, Epilepsy/Seizure Disorder and Asthma.
We got the 21 hour Video EEG results back while Brynn was away at Camp. No seizures were captured on the 21 hour recording! He of course does still have the same areas of dysfunction as well as the Epileptic Spikes. At this time, he does not appear to be in a state of Encephalopathy. We will keep the three medications exactly as they are and will only change anything if he starts a downward spiral again. I will be getting him in to the Neuropsychologist soon to see where he is cognitively. I would guess he is about where he was last August, perhaps making strides in a few areas, but perhaps falling back in a few also. I am looking forward to moving soon... More about that another time! :) Brynn did get approved for SSI last week too. I expected to have to fight for it and he would be closer to 18 before he got approved, but they approved him the first time. Such a relief knowing that if anything happens to either my Husband or I or us both, he will be taken care of. Here in LA there is a 5-6 year waiting list for Waiver services for MR children/adults. I have already picked one of his siblings and discussed with them all that someone will have to take care of him, he is blessed to have 3 older and 2 younger siblings. So it's only natural to look forward... with praise and thanksgiving that the Father got us this far... and knowing that He and He alone holds the future... With that I look forward with great anticipation, praying for His will to be done, now and always... ~Denise
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