lots to catch up on
Okay, i won't take the time to post pictures right now (mostly because i haven't had my camera recently and have to wait for others to e-mail me pix!).
I'll try to breeze through the updates as quickly as possible.
First, Uncle Fred: he is recovering miraculously! Whew! Totally amazing that he pulled through last week. Sharon and I had a trip planned for PA for a long weekend and i was able to see Fred in person. I wasn't there for his critical time and so just was able to have very pleasant visits with him! Sharon wasn't able to see him at all (he is in isolation at the hospital)but luckily we had help from Rachel and Lorrie and Greg and Angela who watched her at various times so that i could visit with him. I actually had some of the best conversations I've had with him since the accident!
And the trip was wonderful. Sharon was truly amazing (more on that in a minute) and we had a great time. Sharon got to visit with the (Carolyn) Brown kids and Jennifer's Lydia again and it was awesome! They had all just seen each other in the past month and so they just played and had a ball at Lorrie and Fred's house (which is pure heaven for kids...!! the yard, the ramps, the toys!). Carolyn's little Gabe played with Sharon for about 40 minutes while other kids were doing things she couldn't keep up with and it just warmed my heart to watch! They are almost exactly the same age and really enjoyed each other. And little Lydia followed Sharon all over the place! It was so good to watch Sharon holding her own with typical kids and thoroughly enjoying herself rather than being timid.
And we stayed with my best friend Angela and so Sharon got to visit for 4 days with Molly. They danced and sang and played for hours on end! Such a great trip for Sharon (and me of course!)
And a well deserved trip for her as well. I'll have to backtrack and update you on the seizure status. As you know, the initial EEG showed seizure activity and so Sharon was immediately put on a seizure medication. As we gradually increased the meds, we began to notice that her sleeping actually got significantly worse. It was a very scary time as the meds seemed to make things worse instead of better. I asked for a sleep study and got one within days. Simultaneously, the meds seemed to begin really working and she was sleeping better than she had in a long time. Sharon and I stayed overnight at the hospital last Tuesday. She was again hooked up to EEG leads. These ones were seriously glued to her head and the glue is STILL there. She was amazing and was able to sleep as well as she normally does. They woke her up at 6:00 am (WAY too early for her!) and sent us on our way. That was the roughest part! That was the day we flew to PA, which is why she gets the trooper award! It takes the doctors a few days to read the sleep study and get results to us so our neuro told us to go ahead with the trip and just make sure Sharon was getting enough sleep.
While on the trip i got a phone call that Sharon did have seizures during the sleep study (the obvious hope was that the medication would have stopped the seizures by the time the sleep study happened). So once again they increased the medication.
The bottom line(s) is this: seizures are very difficult to control. When they have been happening as frequently as Sharon's have, they are even harder to get under control. it often takes many weeks or months and often medication changes etc. I do trust our neuro and feel that she listens to us and is very available to us, so that is a relief. I think i talk to her nurse at least twice a week now! We don't know how long it is going to take to get these under control. For those who have medical backgrounds, they are sub clinical, partial seizures in her frontal lobes (both of them). What this means to most of us is that we have no idea what they look like. She doesn't convulse or shake like people do on TV. It makes it impossible for us to know if she is having them or not. Right now all we have to go on is her sleeping patterns and that's not easy since she is not a good sleeper (a chicken and the egg situation: is she a restless sleeper because of seizures, or has her restless sleeping brought on the seizures?...we will probably never know).
So we will be on this roller coaster for a very long time. We hope and pray that the seizures respond to the meds NOW and STOP. We don't want to subject her to continual EEGS and sleep studies so we hope that we will be able to clearly see that they have stopped soon.
As for Sharon, she is just going about her happy life! She willingly takes her medicine twice a day (such a big girl!) and is loving school and life! She's amazing. We hope that she won't know the affects of this new diagnosis. We will have to be very protective of her sleep which may hinder some travel plans (no jet lag, and no matter where we are we need to be sure she can sleep well) but other than that, life goes on! Believe it or not i'm still fighting the therapist battle, but really don't care too much about it. Sharon's in a great place and since she's getting her speech therapy that's all i really care about right now! We definitely have learned to pick our battles! One wise mother of a child with CP said "this is a very long marathon, not a sprint, so don't burn out too soon!"
I'm very glad you're cheering us on! Thanks for checking in and for your concern! hopefully i'll have some great pictures up soon of our trip!!!
I'll try to breeze through the updates as quickly as possible.
First, Uncle Fred: he is recovering miraculously! Whew! Totally amazing that he pulled through last week. Sharon and I had a trip planned for PA for a long weekend and i was able to see Fred in person. I wasn't there for his critical time and so just was able to have very pleasant visits with him! Sharon wasn't able to see him at all (he is in isolation at the hospital)but luckily we had help from Rachel and Lorrie and Greg and Angela who watched her at various times so that i could visit with him. I actually had some of the best conversations I've had with him since the accident!
And the trip was wonderful. Sharon was truly amazing (more on that in a minute) and we had a great time. Sharon got to visit with the (Carolyn) Brown kids and Jennifer's Lydia again and it was awesome! They had all just seen each other in the past month and so they just played and had a ball at Lorrie and Fred's house (which is pure heaven for kids...!! the yard, the ramps, the toys!). Carolyn's little Gabe played with Sharon for about 40 minutes while other kids were doing things she couldn't keep up with and it just warmed my heart to watch! They are almost exactly the same age and really enjoyed each other. And little Lydia followed Sharon all over the place! It was so good to watch Sharon holding her own with typical kids and thoroughly enjoying herself rather than being timid.
And we stayed with my best friend Angela and so Sharon got to visit for 4 days with Molly. They danced and sang and played for hours on end! Such a great trip for Sharon (and me of course!)
And a well deserved trip for her as well. I'll have to backtrack and update you on the seizure status. As you know, the initial EEG showed seizure activity and so Sharon was immediately put on a seizure medication. As we gradually increased the meds, we began to notice that her sleeping actually got significantly worse. It was a very scary time as the meds seemed to make things worse instead of better. I asked for a sleep study and got one within days. Simultaneously, the meds seemed to begin really working and she was sleeping better than she had in a long time. Sharon and I stayed overnight at the hospital last Tuesday. She was again hooked up to EEG leads. These ones were seriously glued to her head and the glue is STILL there. She was amazing and was able to sleep as well as she normally does. They woke her up at 6:00 am (WAY too early for her!) and sent us on our way. That was the roughest part! That was the day we flew to PA, which is why she gets the trooper award! It takes the doctors a few days to read the sleep study and get results to us so our neuro told us to go ahead with the trip and just make sure Sharon was getting enough sleep.
While on the trip i got a phone call that Sharon did have seizures during the sleep study (the obvious hope was that the medication would have stopped the seizures by the time the sleep study happened). So once again they increased the medication.
The bottom line(s) is this: seizures are very difficult to control. When they have been happening as frequently as Sharon's have, they are even harder to get under control. it often takes many weeks or months and often medication changes etc. I do trust our neuro and feel that she listens to us and is very available to us, so that is a relief. I think i talk to her nurse at least twice a week now! We don't know how long it is going to take to get these under control. For those who have medical backgrounds, they are sub clinical, partial seizures in her frontal lobes (both of them). What this means to most of us is that we have no idea what they look like. She doesn't convulse or shake like people do on TV. It makes it impossible for us to know if she is having them or not. Right now all we have to go on is her sleeping patterns and that's not easy since she is not a good sleeper (a chicken and the egg situation: is she a restless sleeper because of seizures, or has her restless sleeping brought on the seizures?...we will probably never know).
So we will be on this roller coaster for a very long time. We hope and pray that the seizures respond to the meds NOW and STOP. We don't want to subject her to continual EEGS and sleep studies so we hope that we will be able to clearly see that they have stopped soon.
As for Sharon, she is just going about her happy life! She willingly takes her medicine twice a day (such a big girl!) and is loving school and life! She's amazing. We hope that she won't know the affects of this new diagnosis. We will have to be very protective of her sleep which may hinder some travel plans (no jet lag, and no matter where we are we need to be sure she can sleep well) but other than that, life goes on! Believe it or not i'm still fighting the therapist battle, but really don't care too much about it. Sharon's in a great place and since she's getting her speech therapy that's all i really care about right now! We definitely have learned to pick our battles! One wise mother of a child with CP said "this is a very long marathon, not a sprint, so don't burn out too soon!"
I'm very glad you're cheering us on! Thanks for checking in and for your concern! hopefully i'll have some great pictures up soon of our trip!!!
posted by Jaye @ 6:00 PM
