So we now have a diagnosis for Michael and a new journey begins. Michael was just diagnosed with Myotonic Dystrophy. His care has been transferred from Doernbeckers CH to Shriners hospital since they specialize in the Muscular Dystrophies. He has the congenital form of Myotonic Dystrophy, which means his Mother has the condition is well but adult form. My anger at her abandonment of him has lessened greatly after reading what symptoms she would present with. 2 of the biggest are apathy and depression.
What does this mean for us? We know know why he has the hypotonia he has and why he does certain things or is delayed. He was already getting OT,PT and Speech therapy before the dx so we are a step ahead in all that. I had demanded it earlier when I realized his neuro deficit was hindering things. Our house looks like a mini obstacle gym. Now i will be ordering a sign language learning program because they usually sign for communication first, as speech is very delayed and due to weakened muscles in face many times hard to understand until they build up the strength.
I am so fortunate to work from home and be able to be here for him.
Don't have to worry about day care and germs. I work, do some PT, work, swing, work, feed, work, play.... Not a lot of free time at all but that will come later.
So I am raising another generation.
What I miss:
1) long hikes whenever I wanted to get up and go.
2) Traveling as we didn't do the Disney stuff but did High Adventure stuff that you cannot take young kids on.
3) Sleep.. he still does not sleep thru night.
4) The part of my job that entailed travel and meetings in other states. When i travel now for meetings, it is over a day. Fly there and then fly home so not away for any great length of time. I do not attend any meeting that is more than a day.
5) Doing all my craft projects when had free time.
6) Being able to take off any weekend I wanted to if I felt like it.
7) Doing things with Steven just the two of us. He too has given up a lot of Mom and Me time but has been a trooper. He always said he wanted a little brother.. well...
But with everything I have given up for awhile WE have gained so much.
1) Squeezies every morning from the cutest little cuddely bug.
2) Giggles that make my heart sing.
3) Little hands pulling on my leg just asking for kisses.
4) The overwhelming feeling of love I have for Michael as I watch him sleep or carry him to bed.
5) Playing in the park again and being silly.
6) The overwhelming feeling I get again as I watch Steven playing with Michael and hear the uncontrollable laughter.
7) Knowing I am needed, really needed for this little one to live the life he deserves.
While the things I miss are only temporary, the things I have been blessed with are for a lifetime..hopefully
What does this mean for us? We know know why he has the hypotonia he has and why he does certain things or is delayed. He was already getting OT,PT and Speech therapy before the dx so we are a step ahead in all that. I had demanded it earlier when I realized his neuro deficit was hindering things. Our house looks like a mini obstacle gym. Now i will be ordering a sign language learning program because they usually sign for communication first, as speech is very delayed and due to weakened muscles in face many times hard to understand until they build up the strength.
I am so fortunate to work from home and be able to be here for him.
Don't have to worry about day care and germs. I work, do some PT, work, swing, work, feed, work, play.... Not a lot of free time at all but that will come later.
So I am raising another generation.
What I miss:
1) long hikes whenever I wanted to get up and go.
2) Traveling as we didn't do the Disney stuff but did High Adventure stuff that you cannot take young kids on.
3) Sleep.. he still does not sleep thru night.
4) The part of my job that entailed travel and meetings in other states. When i travel now for meetings, it is over a day. Fly there and then fly home so not away for any great length of time. I do not attend any meeting that is more than a day.
5) Doing all my craft projects when had free time.
6) Being able to take off any weekend I wanted to if I felt like it.
7) Doing things with Steven just the two of us. He too has given up a lot of Mom and Me time but has been a trooper. He always said he wanted a little brother.. well...
But with everything I have given up for awhile WE have gained so much.
1) Squeezies every morning from the cutest little cuddely bug.
2) Giggles that make my heart sing.
3) Little hands pulling on my leg just asking for kisses.
4) The overwhelming feeling of love I have for Michael as I watch him sleep or carry him to bed.
5) Playing in the park again and being silly.
6) The overwhelming feeling I get again as I watch Steven playing with Michael and hear the uncontrollable laughter.
7) Knowing I am needed, really needed for this little one to live the life he deserves.
While the things I miss are only temporary, the things I have been blessed with are for a lifetime..hopefully
your blog is great! I think this precious boy couldn't have been born into a better family. Bless you!
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