September update
In support of
Allie D
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Allie D
We’ve had a lot going on in the past two months!
Firstly, Allison underwent a major leg surgery. This was also her 12th surgery. They cut her tendons, rerouted them, and lengthened them. They also reconstructed her bones and drilled holes. She was in a cast for 5 weeks and couldn’t weight bear. We just got the cast off today, although a bit early since she had a pressure sore forming. The surgery is quite painful at first. Now, she will go back into her AFO.
Allison also injured her knee. Dystonia spasm cause a little piece of bone to be pulled off. Her knee is quite swollen and causing pain.
We have an important procedure coming up on the 25th. They will inject a muscle relaxant called baclofen into her spinal cord. If this helps we will plan a big procedure to place the permanent pump. It will hopefully allows her more comfort. If it doesn’t work, we have run out of options. We are cautiously optimistic.
Next week we will head 5hrs up to Dallas for a neuromuscular and GI appointment. Then we will go up again in November for Botox and the HSP specialist.
Although Allison just received Botox in August, her spasticity and dystonia has already burnt it off. Typically it should last 3 months. It’s been less than a month and we have no benefit anymore. This is because she has a severe condition.
Allison’s condition has progressed. She is having a more difficult time transferring in and out of our van. It’s becoming crucial that we can get her a wheelchair van. Unfortunately it will be a bit due to costs.
Today Allison had what should have been simple blood work. But that turned into a 2hr thing and involved the ultrasound and PICU team to get labs. They did two vein pokes. And even with the ultrasound she does not have many accessible veins. They are quite deep, clot easily, roll, and pretty much anything a vein could do. They ended up having to poke her finger 3 times and drip blood out. And even then they had to forgo a blood panel because they couldn’t get anymore.
Thank you everyone for your support. We really appreciate it.
Firstly, Allison underwent a major leg surgery. This was also her 12th surgery. They cut her tendons, rerouted them, and lengthened them. They also reconstructed her bones and drilled holes. She was in a cast for 5 weeks and couldn’t weight bear. We just got the cast off today, although a bit early since she had a pressure sore forming. The surgery is quite painful at first. Now, she will go back into her AFO.
Allison also injured her knee. Dystonia spasm cause a little piece of bone to be pulled off. Her knee is quite swollen and causing pain.
We have an important procedure coming up on the 25th. They will inject a muscle relaxant called baclofen into her spinal cord. If this helps we will plan a big procedure to place the permanent pump. It will hopefully allows her more comfort. If it doesn’t work, we have run out of options. We are cautiously optimistic.
Next week we will head 5hrs up to Dallas for a neuromuscular and GI appointment. Then we will go up again in November for Botox and the HSP specialist.
Although Allison just received Botox in August, her spasticity and dystonia has already burnt it off. Typically it should last 3 months. It’s been less than a month and we have no benefit anymore. This is because she has a severe condition.
Allison’s condition has progressed. She is having a more difficult time transferring in and out of our van. It’s becoming crucial that we can get her a wheelchair van. Unfortunately it will be a bit due to costs.
Today Allison had what should have been simple blood work. But that turned into a 2hr thing and involved the ultrasound and PICU team to get labs. They did two vein pokes. And even with the ultrasound she does not have many accessible veins. They are quite deep, clot easily, roll, and pretty much anything a vein could do. They ended up having to poke her finger 3 times and drip blood out. And even then they had to forgo a blood panel because they couldn’t get anymore.
Thank you everyone for your support. We really appreciate it.
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