Another Diagnosis, another Tool Kit, another round of appointments.
Michael had his Child Developmental Appointment for assessment of needs. We walked in not knowing what was going to be suggested. We walked out with the diagnosis of Autism Spectrum Disorder. Ugh. Now I knew a dual diagnosis is common with children with Congenital Myotonic Dystrophy. We just didn't see Michael triggering enough of the bullet points for the diagnosis. Shows how much I know. I knew he had facial aversion until he knows you and sometimes even with us. Yes, he has repetitive behaviors. Spinning things.. Awesome!!! Full body movements when excited, since birth. Language, impaired but he has CMMD. So what now? 100 day family kit for Autism with things to do each day. A new Study to participate in about teaching kids with autism. ABA therapy on top of even more speech. :/ I am exhausted just thinking about it. I am thinking to start it all after our vacation. Lets go sit on the beach for 2 weeks and play and then come back to a new reality.
The ortho assessment was not positive either. They reminded me Michael has clonus in his left foot. I knew this but had forgotten. It came screaming back. Maybe I blocked it out? Clonus is caused by lesions on the brain. When Michael was 4 months old, his Bio mother went to jail and she left him with others not letting us know. When the court gave us the power to take him, we picked him up. He was lethargic, drooling and unable to focus. He wasn't eating. We drove from that location straight to the MD office who had seen him earlier in day and there was dramatic difference. An MRI was ordered and was completed within the 24 hours. Had to drive 3 hours to get it. Rather traumatic for Michael since they had to put him under for it. Later the report returned that he had brain lesion. Whether he had been dropped and suffered injury or was Shaken baby they were not sure. They just said the child could not be returned to mother and since father at that time had just gotten sole custody and was living with us it kind of just didn't get discussed a whole lot more following and none since we have had permanent legal Guardianship. The clonus of course appeared and PT and MD figured it was from whatever injury Michael had suffered previously. So 3 years later, has he had a repeat MRI? I don't want to have to put him through that again. Of course we need to know exactly where any lesions may be, given he is asymmetical in other areas as well. It was pointed out that it causes Michael to trip more in his AFOs as when he tries to dorsiflex, he spasms and loses his balance. He is toe walking more when in AFOs. The reason he pronates so far out is actually in response to the Clonus and keeps it from occuring. Well that is great that he can be steady with pronation, but he can't continue to walk like that or his knees and hips will suffer so needs AFOs. Can you all just figure this out for me and tell me what is next? My head hurts.
A big positive is all his care is being transferred to Eugene from Portland so we don't have to drive so far for Neuro and Ortho appointments. We will still have to go up for specific tests like MRI as only at Doernbecker's in Portland, but those things are not routine and only as needed. I was very impressed with the Eugene team and felt comfortable with them. Michael liked the MDs as well which is a plus.
Another change to Michael's life is a baby sister. Our son Trevyn, Michael's bio father and his wife Zephyra had a beautiful little girl. Michael keeps saying baby so we went to see the baby again. Of course his attention span to actually sit and admire a baby isn't there but he kept walking around and coming back and patting the baby and saying, "Good job baby". Zephyra was so patient and good with him as her toes got trampled as he came in for the pat on Lilith's head. Lilith was not distressed as all by the gentle caresses to her head. Michael was very gentle and he said "gentle" too when we would just give reminders as he was approaching fast. Want to start building the bond right away between the two and Michael seems to be all for that. He is very confident in his own worth so jealousy wasn't displayed. He might not share his fishing pole but he shared me :) I hope that doesn't speak of My worth!
The ortho assessment was not positive either. They reminded me Michael has clonus in his left foot. I knew this but had forgotten. It came screaming back. Maybe I blocked it out? Clonus is caused by lesions on the brain. When Michael was 4 months old, his Bio mother went to jail and she left him with others not letting us know. When the court gave us the power to take him, we picked him up. He was lethargic, drooling and unable to focus. He wasn't eating. We drove from that location straight to the MD office who had seen him earlier in day and there was dramatic difference. An MRI was ordered and was completed within the 24 hours. Had to drive 3 hours to get it. Rather traumatic for Michael since they had to put him under for it. Later the report returned that he had brain lesion. Whether he had been dropped and suffered injury or was Shaken baby they were not sure. They just said the child could not be returned to mother and since father at that time had just gotten sole custody and was living with us it kind of just didn't get discussed a whole lot more following and none since we have had permanent legal Guardianship. The clonus of course appeared and PT and MD figured it was from whatever injury Michael had suffered previously. So 3 years later, has he had a repeat MRI? I don't want to have to put him through that again. Of course we need to know exactly where any lesions may be, given he is asymmetical in other areas as well. It was pointed out that it causes Michael to trip more in his AFOs as when he tries to dorsiflex, he spasms and loses his balance. He is toe walking more when in AFOs. The reason he pronates so far out is actually in response to the Clonus and keeps it from occuring. Well that is great that he can be steady with pronation, but he can't continue to walk like that or his knees and hips will suffer so needs AFOs. Can you all just figure this out for me and tell me what is next? My head hurts.
A big positive is all his care is being transferred to Eugene from Portland so we don't have to drive so far for Neuro and Ortho appointments. We will still have to go up for specific tests like MRI as only at Doernbecker's in Portland, but those things are not routine and only as needed. I was very impressed with the Eugene team and felt comfortable with them. Michael liked the MDs as well which is a plus.
Another change to Michael's life is a baby sister. Our son Trevyn, Michael's bio father and his wife Zephyra had a beautiful little girl. Michael keeps saying baby so we went to see the baby again. Of course his attention span to actually sit and admire a baby isn't there but he kept walking around and coming back and patting the baby and saying, "Good job baby". Zephyra was so patient and good with him as her toes got trampled as he came in for the pat on Lilith's head. Lilith was not distressed as all by the gentle caresses to her head. Michael was very gentle and he said "gentle" too when we would just give reminders as he was approaching fast. Want to start building the bond right away between the two and Michael seems to be all for that. He is very confident in his own worth so jealousy wasn't displayed. He might not share his fishing pole but he shared me :) I hope that doesn't speak of My worth!
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