Previous Posts of Ashleigh's:
Some Neighbors
New Update on Ashleigh
On Saturday, Ashleigh came to me & her legs were shaking so badly. The look in her eyes had her worried. It had me worried, too. Ash saw her rheumatologist today. I was not sure if this shaky was from the gas or from her disease. Her rheumatologist said it is from the disease not the gas. The gas mostly likely did not pass through her skin since I worked fast to get her out of her jeans & into the tub. I am to follow up with her neurologist. Her rheumatologist could not understand why a 4 year old had gasoline in her possession. Yea, we don't understand that, too. I blame it on the mother. A mother is to protect the child. I believe this mother did not watch her own child & by doing this, she put my child in harm's way. Opps, I am getting side tracked.
I did called her neurologist before her appointment with the rheumatologist. I had to leave a message. Not sure when I will hear back the neurologist's nurse. I actually stopped by the neurologist department, but I had to call the neurologist's nurse. Sometimes this nurse & I don't get along. It took over a year or so to get her to listen about Ashleigh's pain. I called a lot & I argued a lot. Her neurologist mentioned that if the dragging of her left leg continued that an MRI would be needed & to have her come back in 6 months. I think she needs to be seen a lot sooner. The shaky legs is a new symptom. Something is going on. I think the progression is here for real now. I was in denial. We knew 1 day this could happen, but why now?
Once spring comes, we will have a lot of work to do. I need to do some research now about grants for the disability. I need to get a ramp put in for Ash. I will explain later once we get into our new home.
For more information on Spastic Paraparesis, click here.
I took this past weekend off from packing since Saturday evening was Noah's soccer banquet. It was sad because it was his last one with this soccer association. I told Noah that they were our home. He was like "Home?" I said "Yes, our soccer home!" Then, he understood. I realized today that I will still be in the area due to Ashleigh's Special Olympics horseback riding, which I can finally get her into. This is not every week though. Noah is starting a new soccer association in the spring. Different colors! Blue instead of red.
By Sunday morning, my fear of getting sick was real. My sore throat was a lot worse & went into a cold. By Monday morning, it was into my chest. A call into my pcp was made for a prescription. I can not take anything over the counter since I have asthma.
I finally went back to packing today, but only did 2 boxes. My dining room is a mess. Wait, mess is not the word to describe it. A wall of boxes. We can not see the dining room table. I can not wait until this move is over. Then, comes the unpacking.
40 days until we move. (Less than 6 weeks.) I am so not ready. I still have 2 big closets & a small closet, the kids' rooms, the bathroom, the bottom Kitchen cabinets, the bar cabinet (above & below), a little in the computer desk, & bikes.......
Any ideas to stay organized? Come on, I need all the help I can get!!!
Mel
Some Neighbors
New Update on Ashleigh
On Saturday, Ashleigh came to me & her legs were shaking so badly. The look in her eyes had her worried. It had me worried, too. Ash saw her rheumatologist today. I was not sure if this shaky was from the gas or from her disease. Her rheumatologist said it is from the disease not the gas. The gas mostly likely did not pass through her skin since I worked fast to get her out of her jeans & into the tub. I am to follow up with her neurologist. Her rheumatologist could not understand why a 4 year old had gasoline in her possession. Yea, we don't understand that, too. I blame it on the mother. A mother is to protect the child. I believe this mother did not watch her own child & by doing this, she put my child in harm's way. Opps, I am getting side tracked.
I did called her neurologist before her appointment with the rheumatologist. I had to leave a message. Not sure when I will hear back the neurologist's nurse. I actually stopped by the neurologist department, but I had to call the neurologist's nurse. Sometimes this nurse & I don't get along. It took over a year or so to get her to listen about Ashleigh's pain. I called a lot & I argued a lot. Her neurologist mentioned that if the dragging of her left leg continued that an MRI would be needed & to have her come back in 6 months. I think she needs to be seen a lot sooner. The shaky legs is a new symptom. Something is going on. I think the progression is here for real now. I was in denial. We knew 1 day this could happen, but why now?
Once spring comes, we will have a lot of work to do. I need to do some research now about grants for the disability. I need to get a ramp put in for Ash. I will explain later once we get into our new home.
For more information on Spastic Paraparesis, click here.
I took this past weekend off from packing since Saturday evening was Noah's soccer banquet. It was sad because it was his last one with this soccer association. I told Noah that they were our home. He was like "Home?" I said "Yes, our soccer home!" Then, he understood. I realized today that I will still be in the area due to Ashleigh's Special Olympics horseback riding, which I can finally get her into. This is not every week though. Noah is starting a new soccer association in the spring. Different colors! Blue instead of red.
By Sunday morning, my fear of getting sick was real. My sore throat was a lot worse & went into a cold. By Monday morning, it was into my chest. A call into my pcp was made for a prescription. I can not take anything over the counter since I have asthma.
I finally went back to packing today, but only did 2 boxes. My dining room is a mess. Wait, mess is not the word to describe it. A wall of boxes. We can not see the dining room table. I can not wait until this move is over. Then, comes the unpacking.
40 days until we move. (Less than 6 weeks.) I am so not ready. I still have 2 big closets & a small closet, the kids' rooms, the bathroom, the bottom Kitchen cabinets, the bar cabinet (above & below), a little in the computer desk, & bikes.......
Any ideas to stay organized? Come on, I need all the help I can get!!!
Mel
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