Enjoying Every Moment
A lot sure has happened the last couple months. I am really unsure where to start.
1. We have new AFOs that Michael actually loves. More about that in a bit.
2. Shriner's clinic visit... May be our last.
3. He has decided to actually talk. His signing is huge and is still primary but he has decided to add words to some signs and replaced the Sign 'All Done" with just words now.
4. He is graduating from the Early Intervention program to preschool.
5. He is 40 inches and 39 lbs. (Steve just had his tendon repair and rotator cuff surgery)
1. Braces. Micheal pronates terribly and my concern was the wear on hips and knee later. We had tried braces previously with no success. Our friend Sarah in the UK recommended silicon AFOs and we found someone that made them near us. Went in for eval with John who could make them and he said.. "Nope, not what Michael needs. I have a plan that is kind of an experiment but can we use Michael?" They paid for AFOs and we were off. Off and going with the first pair of AFOs Michael absolutely loves wearing and wants on. I don't know all the technical terms for how his foot is placed and what they are trying to achieve but it is working. His gait is straighter and much more stable and he has more stamina. We go back next month for casting again for the next stage in the experiment. More below on getting the rx for that.
2. Had our Shriner's visit and it was interesting.......... Ummmm.... Yes that sums it up. So those of you remember how my "new at time" local Aussie EIP PT was the one that recognized Michael as having CMMD and told me to get him tested and the Genetics counselor in her oh so awesome Wisdom said.. "He can't have that, His mother would have it." I pushed back saying.. How would you know if the mother has it or not? You have never seen her! Test Him! and had to fight to get it done? She was the first in the door today and would you believe she said.. Oh I remember Michael. He is the one I discovered had CMMD and this is the doctor that ran his strand when no one else knew what was wrong with him. I saw him and his mom in genetics clinic.
So how do you think I reacted to that? .........
I behaved and just said "No. You never met his mother and we asked to have him tested ourselves." She then kept continuing to try and place us in some happy self-fulfilling spot in her memory ID. OK, let us just do small talk........
The ortho doctor came in and I gave him John's request for the next set of AFOs and needed a rx for it. He disagreed and didn't think Michael even needed AFOs and that AFOs would not correct his pronation or gait. He saw Michael walking without as he has before and then asked me to put them on. I put them on Michael with NO resistance what so ever. He saw the improvement in gate and walking stability AND I think the clincher was, how much happier Michael was wearing them apposed to being bare foot. The doctor then took the AFOs, looked at the modifications and the shoe modifications John had made and said.. I understand what he is doing. Hmmm. Interesting. What do you need? He wrote the rx for the next pair per John's specifications and sent us to x-ray as he wanted an x-ray of Michael standing in the AFOs to see if was achieving what John was trying for.
Long drive back home. I think next time we will just go to Eugene MDA clinic unless really needing something.
3. Already kind of explains it all already. He is starting to actually use words for communication as long as it is a word already in his signing vocabulary. That doesn't mean both can't be there quickly. he did not know what cookie was or sign and his Speech therapist was trying to get him to say. He wouldn't. I told her he didn't know that sign. She signed it. He watched her and later signed and said cookie together. He has paired them correctly since so that was almost instant learning BUT again he had to have the sign.
4. we get to work on our first Special Education Family Education Plan. Oh Joy. Luckily I have a great virtual support group of mothers and fathers that have children with CMMD that have gone before me. I am taking everything they have told me and making sure I do this right!
5. 40 inches and 39 lbs. If no one remembers those growth charts.... That is big. (Steve Rotator cuff surgery)
1. We have new AFOs that Michael actually loves. More about that in a bit.
2. Shriner's clinic visit... May be our last.
3. He has decided to actually talk. His signing is huge and is still primary but he has decided to add words to some signs and replaced the Sign 'All Done" with just words now.
4. He is graduating from the Early Intervention program to preschool.
5. He is 40 inches and 39 lbs. (Steve just had his tendon repair and rotator cuff surgery)
1. Braces. Micheal pronates terribly and my concern was the wear on hips and knee later. We had tried braces previously with no success. Our friend Sarah in the UK recommended silicon AFOs and we found someone that made them near us. Went in for eval with John who could make them and he said.. "Nope, not what Michael needs. I have a plan that is kind of an experiment but can we use Michael?" They paid for AFOs and we were off. Off and going with the first pair of AFOs Michael absolutely loves wearing and wants on. I don't know all the technical terms for how his foot is placed and what they are trying to achieve but it is working. His gait is straighter and much more stable and he has more stamina. We go back next month for casting again for the next stage in the experiment. More below on getting the rx for that.
2. Had our Shriner's visit and it was interesting.......... Ummmm.... Yes that sums it up. So those of you remember how my "new at time" local Aussie EIP PT was the one that recognized Michael as having CMMD and told me to get him tested and the Genetics counselor in her oh so awesome Wisdom said.. "He can't have that, His mother would have it." I pushed back saying.. How would you know if the mother has it or not? You have never seen her! Test Him! and had to fight to get it done? She was the first in the door today and would you believe she said.. Oh I remember Michael. He is the one I discovered had CMMD and this is the doctor that ran his strand when no one else knew what was wrong with him. I saw him and his mom in genetics clinic.
So how do you think I reacted to that? .........
I behaved and just said "No. You never met his mother and we asked to have him tested ourselves." She then kept continuing to try and place us in some happy self-fulfilling spot in her memory ID. OK, let us just do small talk........
The ortho doctor came in and I gave him John's request for the next set of AFOs and needed a rx for it. He disagreed and didn't think Michael even needed AFOs and that AFOs would not correct his pronation or gait. He saw Michael walking without as he has before and then asked me to put them on. I put them on Michael with NO resistance what so ever. He saw the improvement in gate and walking stability AND I think the clincher was, how much happier Michael was wearing them apposed to being bare foot. The doctor then took the AFOs, looked at the modifications and the shoe modifications John had made and said.. I understand what he is doing. Hmmm. Interesting. What do you need? He wrote the rx for the next pair per John's specifications and sent us to x-ray as he wanted an x-ray of Michael standing in the AFOs to see if was achieving what John was trying for.
Long drive back home. I think next time we will just go to Eugene MDA clinic unless really needing something.
3. Already kind of explains it all already. He is starting to actually use words for communication as long as it is a word already in his signing vocabulary. That doesn't mean both can't be there quickly. he did not know what cookie was or sign and his Speech therapist was trying to get him to say. He wouldn't. I told her he didn't know that sign. She signed it. He watched her and later signed and said cookie together. He has paired them correctly since so that was almost instant learning BUT again he had to have the sign.
4. we get to work on our first Special Education Family Education Plan. Oh Joy. Luckily I have a great virtual support group of mothers and fathers that have children with CMMD that have gone before me. I am taking everything they have told me and making sure I do this right!
5. 40 inches and 39 lbs. If no one remembers those growth charts.... That is big. (Steve Rotator cuff surgery)
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