Saturday, October 29, 2011

Joe update

Joe recently got new orthotics. The Pediatric AFO is a molded leg support to help maintain alignment of the bones in the foot and ankle. An AFO will support the foot and provide maximum stability if weakness is present. This is his third pair. The first were just one solid piece that went up to mid-calf. The next pair were two pieces, one short solid pair that went just above his ankles (for all the time use) and those fitted into a taller solid pair that went to upper calf (for standing/walking). This pair is two pieces like the last wet but the larger part is hinged to help encourage walking. We are hopeful that this change will help Joe with his walking as his progress is obviously very slow. Joe also got a SPIO compression vest from his physical therapist. I had never heard of them until recently. From what I understand they are supposed to help via muscular support and sensory input. Here is what the SPIO website says about them: Stabilizing Pressure Input Orthosis (SPIO™) assists patients with stability and proprioceptive deficits. SPIO is a compression system designed to help children with special needs including cerebral palsy, autism, Down Syndrome, sensory processing disorders, and other neuro-muscular delays. While its still early, we have not seen a big difference since getting the compression vest. With every new thing we try a part of me hopes that this will be "the thing" that changes everything. But it never seems to be true.
Developmental Preschool seems to be going well. But we're kind of in the position of "no news is good news" right now. When Joe started dev-preschool
in the spring of '10 we got notes home daily telling us what he did each day. Then last school year they said the notes took too long and they implemented a new system of communication via dry erase board in Joe's backpack and they would circle pictures of the activities that he did each day. This year we get a weekly newsletter telling us the theme for the week and we get notes telling us when he's out of diapers or had a grumpy day. Its been quite frustrating to have the communication go down every year. We get ongoing advice from several people who have more experience in the special needs world and we're discussing the potential of writing it into his IEP that they have to give us daily or weekly updates about what he is doing specifically. I'm not good at being hard nosed and I think that is what needs to happen here.
At home... well... Joe has been rather difficult to manage. He is into everything; opening cabinet doors, getting into trouble at every turn. When I sit down to nurse Christine, Joe throws a big fit and tries to pinch and grab at her and I. He is fascinated by Christine's hair clips and pulls her hair with a death grip. We often barricade off one part of the room or another to keep Joe from hurting Christine. He has found this high pitch screech that is enough to drive me mad. Nate notices when I get really frustrated and he has started saying "Joe just turned on the light in Mom's grumpy room". What? Where does he come up with stuff?
As always, please keep us in your prayers.

Mark 9:36-37 - "He took a little child and had him stand among them. Taking him in his arms, he said to them, 'Whoever welcomes one of these little children in my name welcomes me; and whoever welcomes me does not welcome me but the one who sent me.'" (NIV)

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