Fall to Spring
This last Fall, Michael and I went to Utah to stay with 3 other families that have children in the Congenital Myotonic Dystrophy study. One family came from Idaho and the other two from UK. We all had boys. It was eye opening seeing the differences and similarities in our boys. It was super enjoyable to spend the time with the other families. Dr Johnson, Missy and Becky from the Utah University Study team came to the house for a visit as well. Sarah, one of the Mums, neglected to tell us that the news team was coming too. We had just returned from running the boys in the park when there was a knock at the door. "Hi Dr Johnson, Missy and Becky. And you are?" Man introduces himself, channel 5 news. Ah, well really? Warning would have been nice. "Oh, we told Sarah yesterday!"
The next day we met up with the Contes at the Zoo. Their daughter Kate also has Myotonic Dystrophy and was in town for the study. I warned Elizabeth about the news team. She laughed and said she had been told. You will meet them both in the link below. Was a wonderful day spent with a great group of people that would never have met except for our love for our children and our active search for a cure.
See interview here.
January brought Michael to a Stand. He FINALLY could stand from the floor without holding onto something.
Standing by self! Video
It also brought the flu that knocked us both down. He was sick for his 4th birthday. Poor guy.
February brought Great Grandpa and Great Gran to visit. Michael just could not get enough of them now. He constantly wanted GGPa to pick him up and hold him. He read GGpa a book as well. He snuggled up to GGran.
We had a change in our household with Steve Grandpa moving out. Michael hasn't seemed to notice he is gone. It was pretty quiet around here again. Thinking of Michael needing interactions while I was working, I considered a pet again. I took Michael down to the the local shelter to see if any of our furry friends resonated with him. He found Pip. I took Pip from her cage and set her on Michael and she snuggled in and began to purr. His face lit up wide with his special smile. Adopted! We had to wait a couple days to pick her up as she had not been spayed yet. It was hard pulling Michael away. Saturday, we went to get our kitty. Steven came as well to help. We went in to see Pip and under her cage was another cat that made my heart sing. Again we took her out and let her interact with Michael. She snuggled into him right away. I put her back in her cage and Michael tried to crawl in with her. I said... "Guess we are getting 2!" I asked Steven to think of a name for her and left to do paper work. We came home with Pip and Squeak. Squeak is a 12 lb cat that sounds like a mouse when she meows. It is strange but her. So we have 2 new additions to the family and Michael could not be happier! His speech has taken off and he plays hours everyday with his kitties but mostly Pip. She is so patient with him and puts up with a lot of abuse of ear and tail tugs. Squeak tends to stay to high ground. Pip also sleeps against Michael. Michael wakes up at night multiple times looking to touch. It has woken me numerous times for years and makes sleeping difficult. Pip feeds that need by laying on his legs. Bliss!!!! Cats were not allowed in our house when Steve was here so never would have found Michael's therapy buddy before.
Having fun with tunnel and cat video
Michael is going to have yet another sibling in December. Wanting Michael to have more time with siblings, his father has stepped up to plate. Michael is learning to share me and toys with baby sister Lilith. He adjusted much quicker than I thought he would. Bit of a change for all of us getting used to how we each interact and set boundaries. All a work in progress that is going well. Michael always has someone to play with teaching positive interactions.
We return to Utah next month for Michael's continued study. We will now be going every 6 months. We plan on meeting up with our other families again in Oct/Nov. Michael will always know some of his extended family! We plan on visiting Idaho and UK in the future as well. September sees us return to Washington DC for MDF conference. Who knows what else will spring up between.
With Michael's disability, he is allotted so many paid hours for a respite worker. Courtney has agreed to be Michael's. She has lots of energy, humor and great personality! I foresee a very fun and loving relationship developing.
The next day we met up with the Contes at the Zoo. Their daughter Kate also has Myotonic Dystrophy and was in town for the study. I warned Elizabeth about the news team. She laughed and said she had been told. You will meet them both in the link below. Was a wonderful day spent with a great group of people that would never have met except for our love for our children and our active search for a cure.
See interview here.
January brought Michael to a Stand. He FINALLY could stand from the floor without holding onto something.
Standing by self! Video
It also brought the flu that knocked us both down. He was sick for his 4th birthday. Poor guy.
February brought Great Grandpa and Great Gran to visit. Michael just could not get enough of them now. He constantly wanted GGPa to pick him up and hold him. He read GGpa a book as well. He snuggled up to GGran.
We had a change in our household with Steve Grandpa moving out. Michael hasn't seemed to notice he is gone. It was pretty quiet around here again. Thinking of Michael needing interactions while I was working, I considered a pet again. I took Michael down to the the local shelter to see if any of our furry friends resonated with him. He found Pip. I took Pip from her cage and set her on Michael and she snuggled in and began to purr. His face lit up wide with his special smile. Adopted! We had to wait a couple days to pick her up as she had not been spayed yet. It was hard pulling Michael away. Saturday, we went to get our kitty. Steven came as well to help. We went in to see Pip and under her cage was another cat that made my heart sing. Again we took her out and let her interact with Michael. She snuggled into him right away. I put her back in her cage and Michael tried to crawl in with her. I said... "Guess we are getting 2!" I asked Steven to think of a name for her and left to do paper work. We came home with Pip and Squeak. Squeak is a 12 lb cat that sounds like a mouse when she meows. It is strange but her. So we have 2 new additions to the family and Michael could not be happier! His speech has taken off and he plays hours everyday with his kitties but mostly Pip. She is so patient with him and puts up with a lot of abuse of ear and tail tugs. Squeak tends to stay to high ground. Pip also sleeps against Michael. Michael wakes up at night multiple times looking to touch. It has woken me numerous times for years and makes sleeping difficult. Pip feeds that need by laying on his legs. Bliss!!!! Cats were not allowed in our house when Steve was here so never would have found Michael's therapy buddy before.
Michael is going to have yet another sibling in December. Wanting Michael to have more time with siblings, his father has stepped up to plate. Michael is learning to share me and toys with baby sister Lilith. He adjusted much quicker than I thought he would. Bit of a change for all of us getting used to how we each interact and set boundaries. All a work in progress that is going well. Michael always has someone to play with teaching positive interactions.
We return to Utah next month for Michael's continued study. We will now be going every 6 months. We plan on meeting up with our other families again in Oct/Nov. Michael will always know some of his extended family! We plan on visiting Idaho and UK in the future as well. September sees us return to Washington DC for MDF conference. Who knows what else will spring up between.
With Michael's disability, he is allotted so many paid hours for a respite worker. Courtney has agreed to be Michael's. She has lots of energy, humor and great personality! I foresee a very fun and loving relationship developing.
I love reading about all of Michael's accomlishments and adventures. <3
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