I finally have a diagnosis. This describes exactly what I have been dealing with since I can remember.
Hereditary Spastic Paraplegia (HSP). "This term is used to describe a group of rare, inherited neurological disorders along the motor neuron disease continuum whose primary symptom is progressive spasticity (stiffness) and weakness of the leg and hip muscles. HSP is caused by degeneration of the upper motor neurons in the brain and spinal cord. The main symptom of HSP is progressive difficulty walking due to increasingly weak spastic leg muscles. Initial symptoms include difficulty with balance and stubbing the toe or stumbling."
There is a 50% chance that I can pass this to Dagan. Doctors aren't sure if it happens more in boys or girls. But since only my mom and I have it and we have no boys in the immediate family to compare to, it's a wait and see what happens kinda of thing.
Wednesday, October 15, 2008
We took Dagan on his first camping trip this past weekend to Lake Texana. We had a pretty good time. The weather was nice but the bugs were biting. Of course, we didn't go swimming but Gillian and Dagan splashed around in the kiddie pool Brenda packed. It's hard to take Dagan anywhere now because he wants to walk and we couldn't let him down in the dirt. Thank goodness we had a little tent along so the kids could play inside and stay out of the dirt.
Tuesday, October 7, 2008
Finally, somehow, I figured out how to get a new post. THANKS Kim Brandt!
So the biopsy on my arm went ok. I have a pretty ugly scar now on my left bicep. The doctor in Houston said that I have to come back AGAIN to have a MRI of my pelvis. I will also get the results from the muscle biopsy, and he asked if my mom would come too, because he wants to examine her and see if I got this from her.
I am looking forward to camping this weekend. We are going Saturday and spending the night at Lake Texana. My sister and her family are going Friday night, but I don't want to push Dagan's limits with 2 nights away from home. He hasn't spent a night away from his own bed yet, so this should make for an interesting trip. My parents are going also. My dad is always cool and laid back, but my mom can be such a 'mother-in-law'. I don't know what her problem is lately, she just isn't like she used to be. Maybe is has to do with aging, idk.
Dagan is walking better, not smooth but he is really trying. Tooth number 6 is coming in. I got a peak at it when Dagan was eating supper last night. He has a gap between his two front teeth. It's pretty cute. He is going to be a skeleton for Halloween. I can't wait.