Chapel Hill Update

Cutter's visit went very well. Started out rough with him crying and not wanting to be there. He weighs 36 pounds now! Dr. Elkay wants to wean him off Dilantin. At first she said it would take 16 months. Then 8 months. We're thinking with the way it is written it will only take 8 months. Is not touching any other medicines. No MRI or EEG right now. She is not ready to put him to sleep again yet. She called him "delicate" and said when we take him for his vaccinations that he does not need to get More than one in one day. We need to be cautious if he were to get sick and run a fever. This causes his threshold to be lowered. Keep Him healthy as we can to reduce chances of having a seizure. Dr. Elkay is leaving Chapel Hill in June. Said it was confidential so we don't know why. We will see her one more time before then, in April. We were upset about this. We definitely don't want to change doctors, especially in the middle of medication changes. One of the current doctors will take her patients. So, that is all for now! On our way home! (With three new ninja turtle shirts, a plastic horse and two hot wheels cars....they spoiled both boys at the hospital!) Thank you for the prayers!!!

CIDD Results

We finally got the results back from the Neuropsychological Developmental testing Cutter had done in October. He did very well and has grown a lot! The tests completed were the same tests that were completed 17 months prior in May of 2012. They measure everything in "months" so if this seems confusing then just think about it in terms of his age in months! Gross Motor Skills: He went from performing at a 20 month age to performing at a 27 month level. He gained 7 months! Fine Motor Skills: He went from performing at an 18th month old level to performing at a 28 month old level. A 10 month gain! Expressive Language: He went from a 23 month to 29 month old level. 6 month gain! Receptive Language: He went from a 23 month level to a 24 month level. Only a 1 month gain, but we were not surprised by this. This is a HUGE part of his sensory issues. Visual Perception: He made a huge gain from 16 months to 31 months! A 15 month gain! We are very proud of him! He has a long way to go, but is gaining ground!!! We are excited!