Stretching
Living with Shwachman Diamond Syndrome means you need to be nimble and flexible. Good thing the heart is a muscle because rest assured, it's going to be stretched and stretched.
This weekend is going to stretch me to my limits and it will be interesting to see how we all fare. Spencer is going to Boise for the State Basketball Tournament with a group of friends. That in itself is testing me in so many ways. In addition, Spencer has had a really rough week. Tonight, as he lays in the recliner he says, "Mom!! I don't even know how I feel anymore! I can't tell the difference between nausea and heartburn. I don't even remember what it feels like to be healthy."
He eats Pepto Bismal like they are Smarties. He has had to rely on Zofran, an anti nausea med to get him through the day and night. There is not an antacid strong enough to handle whatever is going on with him. I have no idea how he will manage this weekend and keep all his meds straight. The boys will be eating nothing but junk and I'm guessing they won't be tucked into their hotel room beds at 9:00 for a peaceful night's sleep. All of that means he is going to be one sick kid this weekend and probably crash when he gets home.
Spencer is still going to physical therapy for the compressed facet joints in his back. They are getting better but he is slow to heal. Today while doing some of the exercises involving his legs, I noticed that his movement was jerky as opposed to fluid. I asked the doctor if it was normal and he was taken aback. He said the movement looked like his little old ladies he works on who are weak and don't have enough energy to do the exercises. It doesn't make sense. It's times like this that I can't wait to get to Seattle for the muscle biopsy and figure out what is going on with this poor kid. I wish there was something I could do for him. Mitochondrial disease just makes everything more complicated.
This weekend is going to stretch me to my limits and it will be interesting to see how we all fare. Spencer is going to Boise for the State Basketball Tournament with a group of friends. That in itself is testing me in so many ways. In addition, Spencer has had a really rough week. Tonight, as he lays in the recliner he says, "Mom!! I don't even know how I feel anymore! I can't tell the difference between nausea and heartburn. I don't even remember what it feels like to be healthy."
He eats Pepto Bismal like they are Smarties. He has had to rely on Zofran, an anti nausea med to get him through the day and night. There is not an antacid strong enough to handle whatever is going on with him. I have no idea how he will manage this weekend and keep all his meds straight. The boys will be eating nothing but junk and I'm guessing they won't be tucked into their hotel room beds at 9:00 for a peaceful night's sleep. All of that means he is going to be one sick kid this weekend and probably crash when he gets home.
Spencer is still going to physical therapy for the compressed facet joints in his back. They are getting better but he is slow to heal. Today while doing some of the exercises involving his legs, I noticed that his movement was jerky as opposed to fluid. I asked the doctor if it was normal and he was taken aback. He said the movement looked like his little old ladies he works on who are weak and don't have enough energy to do the exercises. It doesn't make sense. It's times like this that I can't wait to get to Seattle for the muscle biopsy and figure out what is going on with this poor kid. I wish there was something I could do for him. Mitochondrial disease just makes everything more complicated.
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