CMD-Washington-British Invasion
What a year!
This has been a year of changes for both Michael and our family as a whole. So much has happened.
Michael started 2 days at Head Start with typical children and does 2 days at the Education Learning Center as well. He is doing great at both. More interactions, more engagement, and more songs :)
He shows off reading where his peers are not. Glad he has a strength to share. He LOVES riding the bus. He wants to ride the bus everyday. He wants to take his cat too. No Michael, cats are not allowed.
We made the trek to Washington DC to meet representatives and participate in a Congressional hearing on Myotonic Dystrophy. Continue to fight for funding for a cure. We left Miles behind to attend the MDF Gala. Michael enjoyed himself but was the only Little Little one in attendance.
We have wonderful friends, Sarah Ruane and her son Josh that live in England. Josh is also in the same Congenital Myotonic Dystrophy Study Michael participates in. We are trying to coincide our visits near the same time so we can spend time together. We spent last year Thanksgiving, and this year aimed near Halloween. I was cutting it close due to personal issues but was able to hop in the car on a Thursday after Michael got out of school and start the road trip to Utah. Drove this time as was also going to continue on our road trip as soon as the British Invasion had landed :)
I can't express how great it is to have other children and parents dealing with the same disease to interact with. Our extended family!
On Saturday we took off for Yellowstone Park from Utah. Both our young travelers did very well. My car seats will never be the same but it is a kid mobile now anyway. From Yellowstone we drove to Idaho Falls to visit yet another cousin.
Dallen is the oldest of the three, Josh next and Michael a year younger than Josh. They are in a pool being fed by a hot spring. So many adventures!
It was a very relaxing, and enjoyable trip. We so needed the time away. After dropping Sarah, Kevin and Josh back in Utah for their own appointment with the Study Team, Michael and I drove home.
I got stopped for speeding in Oregon but the NICE officer gave Michael a teddy bear instead of giving me a ticket!!!!!
Michael has a new little brother. He gets much more play time with Sister Lilith now which he enjoys. He loves his little sister. Luckily Lilith has taken a liking to my own cat Squeak so there isn't any cat competition.
This has been a year of changes for both Michael and our family as a whole. So much has happened.
Michael started 2 days at Head Start with typical children and does 2 days at the Education Learning Center as well. He is doing great at both. More interactions, more engagement, and more songs :)
He shows off reading where his peers are not. Glad he has a strength to share. He LOVES riding the bus. He wants to ride the bus everyday. He wants to take his cat too. No Michael, cats are not allowed.
We made the trek to Washington DC to meet representatives and participate in a Congressional hearing on Myotonic Dystrophy. Continue to fight for funding for a cure. We left Miles behind to attend the MDF Gala. Michael enjoyed himself but was the only Little Little one in attendance.
We have wonderful friends, Sarah Ruane and her son Josh that live in England. Josh is also in the same Congenital Myotonic Dystrophy Study Michael participates in. We are trying to coincide our visits near the same time so we can spend time together. We spent last year Thanksgiving, and this year aimed near Halloween. I was cutting it close due to personal issues but was able to hop in the car on a Thursday after Michael got out of school and start the road trip to Utah. Drove this time as was also going to continue on our road trip as soon as the British Invasion had landed :)
I can't express how great it is to have other children and parents dealing with the same disease to interact with. Our extended family!
On Saturday we took off for Yellowstone Park from Utah. Both our young travelers did very well. My car seats will never be the same but it is a kid mobile now anyway. From Yellowstone we drove to Idaho Falls to visit yet another cousin.
Dallen is the oldest of the three, Josh next and Michael a year younger than Josh. They are in a pool being fed by a hot spring. So many adventures!
It was a very relaxing, and enjoyable trip. We so needed the time away. After dropping Sarah, Kevin and Josh back in Utah for their own appointment with the Study Team, Michael and I drove home.
I got stopped for speeding in Oregon but the NICE officer gave Michael a teddy bear instead of giving me a ticket!!!!!
Michael has a new little brother. He gets much more play time with Sister Lilith now which he enjoys. He loves his little sister. Luckily Lilith has taken a liking to my own cat Squeak so there isn't any cat competition.
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