Friday, April 30, 2010

Two More Appointments

Yesterday we had another reevaluation, this time from the group at ECI. They do an evaluation every year to see where he's at and to make more goals. We dropped their therapy last fall when we switched to the place where we go for PT and Speech. So we have been receiving service coordination, which means I get a call every month to make sure we are okay and check if there is anything they can do for us. So we opted to discontinue that as well since we are not going to go back to them before he turns three and after that age therapy is offered through the school instead of in the home.

Anyway, that being said I have decided that I don't like anyone to evaluate him who doesn't know him. I think that's why I am apprehensive about going to the DS Clinic (which coincidentally is next week and I am going solo for the first time since Randy can't go with me.) Without seeing him no one can truly understand what he can do. I can't even explain his ability well enough. Yesterday they scored Justin in 5 areas (with his scores in months of age):
  • cognitive 22
  • communication 16
  • social-emotional 32
  • physical 11
  • adaptive behavior 16

Nothing was too unusual. I wasn't quite prepared for their assessment because I hadn't really paid much attention to the things that they scored in previous tests. Physical was so low because he can't walk. They lump OT and PT skills together so even though he can feed himself and stack blocks he still low because of the lack of walking. And I guess anyone who knows him knows that he is a social boy. If he knows you and is comfortable with you, he goes right for you. He nearly jumps out of my arms to go to Miss Penny. And he crawls after Miss Caroline for therapy every week. He scores even higher than his physical age in social! Kind of cool to me. Communication is low because while he understands he cannot express. I hate it when the testers try to ask a question several different ways to try to get me to say he can do something. Basically they really wanted me to say that he was using some words. He still doesn't say mama. He is actually closer to saying Travis than mama or dada. Sad but kind of neat too. I love watching the brotherly bond develop. I bought them the same sandals for this summer and Justin knows he has the same shoes as big brother.

I am glad that I has this evaluation so I can be prepared for the DS Clinic next week. I know they are going to be upset that he is not cruising, but I am prepared not to let that bother me. I am excited in what he can do and I don't what to be brought down by the can'ts.


And today we went to get measured for Justin's new orthotics. They exact orthotic (or combination of orthotics) is yet to be determined. After seeing Justin the orthotist (?) is going to call Penny and see if together they can decide what is best for Justin. The SMO model works for pronation but Justin also hyper extends his knees so there is an advanced model that stabilized the knees and prevents hyperextension. The problem with the advanced model is that is inhibits ankle flexion. (It makes is hard to move the ankle.) So we could go with the SMO PLUS another brace called a HEKO which is specific for hyperextension. Our dilemma is over bracing given that he is going from never having worn a brace to potentially having two. Will he wear them both? Should we go that far already? Our agreement this morning was to try the SMO and then add the HEKO later if he is still hyperextending because sometimes just having the extra stability in the ankles corrects the hyperextension. We are just waiting to double check with the therapists at the DS Clinic and Miss Penny. Also, the advanced model requires casting for fitting and given Justin's dislike of the mere measuring, the longer we can avoid casting the better. (We probably will have to cast as he gets older for the larger models.) The very coolest part was all the different patterns we can get on the brace. It's almost too bad Travis doesn't need one because they have firemen as a pattern. He was going crazy with the choices: Cars (the movie), Bob the Builder, trucks, construction equipment, and even more. Justin is getting sports (or Elmo, we had to give a back up choice) because of his ball fetish.

And we hit another milestone today. I took the support ring off of Justin's horse and now he can almost get on it himself. And he can make it MOVE! Now he has his eyes on Travis' horse! It was a good morning!


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