We are all packed up and ready to go for our 24 hour vEEG. I have been pushing for it thinking that he would schedule us sooner than next month with all the recent activity. I called this morning about her increased spasms and CP seizures and left a message. A few hours later he called and left a message that he wanted to get us in tomorrow morning. EEG called us by 2PM and had us scheduled for 8AM tomorrow morning. Dr. Neuro mentioned in his message that he wanted to talk to us about treatment if the EEG reveals what we think it will reveal, that she is in fact having more clusters and complex partials. I am not sure if we will still be going in the same direction we had planned after he said that.
Kay isn't really sleeping well at night. We think that she may be having seizures at night, since this all began at the same time we noticed the increase in activity and before we increased the Topamax dose. Today the count for seizures I witnessed was two clusters and two CP's. Clusters usually last a little while, so I feel like I can catch most of those. Some of her CP's only last for a few seconds so there's a good chance I missed some, since I cannot hover over her all day (who can? She's always on the move, crawling around and getting in to everything! the little stinker!).
I will send updates from the hospital. I guess we will find out more info after he reads the EEG. Hoping for the best, but still preparing for what may lie ahead.
Showing posts with label complex partial. Show all posts
Showing posts with label complex partial. Show all posts
Wednesday, October 8, 2008
Tuesday, October 7, 2008
Fear of the Unknown
We have had the seizures kick back up again. We are going to have to increase the meds again tomorrow. More clusters and more cp seizures. One CP at lunch, one CP before we left for dinner. One cluster in the car while we were driving to the breast cancer fund raiser. My friend is doing the SGK 3-Day Walk, so she had her birthday dinner at a restaurant that was willing to donate a portion of the proceeds to breast cancer. Another small cluster at the restaurant. It seems like they are slowly ramping up.
I called Dr. Neuro's assistant and called the dietician to schedule an appointment so we can begin the Ketogenic diet soon. We should have an appointment set up by the time we hit our max dose of Topamax, I hope!
We are still scheduled to see Dr. Genes at the end of the month and still scheduled for a repeat vEEG at the beginning of next month.
We had PT today with a substitute therapist. Ms. Bonnie is taking some time off. I was picking her brain about Kaylee's flaccid muscles. She isn't sure why her muscles are not developing much given her level of activity. She's making progress with her abilities, but she said she doesn't have enough leg muscle tone or hip strength to support her own weight with out assistance. Hence why she is not standing on her own or walking unassisted. She doesn't have the muscle tone to balance her weight. I am getting nervous about her tone not improving much. We work with her so much at home. I'm not impatient for her to walk, I just hate playing the waiting game to try and figure out if there is some other underlying problem. I know they don't have a crystal ball to tell me whether or not she will walk well unassisted, but when ever I say "maybe she'll be walking by Christmas" they say "that seems like a reasonable goal". It's not the confidence they had when we went for our first few sessions that she wouldn't be needing therapy for long with the progress she made in the beginning.
I hate and fear the unknown. I am more confident that I can deal with emotional blows, but it's the wait and see stuff that sends me. I want to know one way or the other. I guess all we can do is hope. I know that's all anyone can do for their child. Everyone has hopes and dreams for their child, but they are a little different when you have kids with special needs. Most people dream of their child going to college, having a good career, having a family, owning a home of their own. For us, we dream of the things many people take for granted. Performing self care tasks independently (dressing, showering, preparing food), be completely potty trained, tie shoes, follow directions, communicate well, make friends, walk, run, play a team sport effectively, ride a tricycle or a two wheeled bike, read at grade level, use money, etc. All these things that you almost anticipate as an automatic is a challenge for my children. Some of these things may never be mastered.
I just ache sometimes knowing what a challenge everything is for them. How must they feel waking up every morning and willing themselves to get up and face all their challenges head on each and every day. I can see how life can be so frustrating. Sometimes it's easier to throw a tantrum than to have to deal with one more thing!!!
So here's to our brave children who get up every day and face their fears in this wobbly old world every day. They are a lot braver than I am!
I called Dr. Neuro's assistant and called the dietician to schedule an appointment so we can begin the Ketogenic diet soon. We should have an appointment set up by the time we hit our max dose of Topamax, I hope!
We are still scheduled to see Dr. Genes at the end of the month and still scheduled for a repeat vEEG at the beginning of next month.
We had PT today with a substitute therapist. Ms. Bonnie is taking some time off. I was picking her brain about Kaylee's flaccid muscles. She isn't sure why her muscles are not developing much given her level of activity. She's making progress with her abilities, but she said she doesn't have enough leg muscle tone or hip strength to support her own weight with out assistance. Hence why she is not standing on her own or walking unassisted. She doesn't have the muscle tone to balance her weight. I am getting nervous about her tone not improving much. We work with her so much at home. I'm not impatient for her to walk, I just hate playing the waiting game to try and figure out if there is some other underlying problem. I know they don't have a crystal ball to tell me whether or not she will walk well unassisted, but when ever I say "maybe she'll be walking by Christmas" they say "that seems like a reasonable goal". It's not the confidence they had when we went for our first few sessions that she wouldn't be needing therapy for long with the progress she made in the beginning.
I hate and fear the unknown. I am more confident that I can deal with emotional blows, but it's the wait and see stuff that sends me. I want to know one way or the other. I guess all we can do is hope. I know that's all anyone can do for their child. Everyone has hopes and dreams for their child, but they are a little different when you have kids with special needs. Most people dream of their child going to college, having a good career, having a family, owning a home of their own. For us, we dream of the things many people take for granted. Performing self care tasks independently (dressing, showering, preparing food), be completely potty trained, tie shoes, follow directions, communicate well, make friends, walk, run, play a team sport effectively, ride a tricycle or a two wheeled bike, read at grade level, use money, etc. All these things that you almost anticipate as an automatic is a challenge for my children. Some of these things may never be mastered.
I just ache sometimes knowing what a challenge everything is for them. How must they feel waking up every morning and willing themselves to get up and face all their challenges head on each and every day. I can see how life can be so frustrating. Sometimes it's easier to throw a tantrum than to have to deal with one more thing!!!
So here's to our brave children who get up every day and face their fears in this wobbly old world every day. They are a lot braver than I am!
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