Tomorrow is the day! We are nervous/excited. It seems like we have been trying to prepare for this forever. You just never know how it is going to play out until you get there. Tomorrow is also Brian's last day of class-kind of weird. It has been a long 3 years. I am so proud of him! The ending of one chapter and the beginning of another.
We hear that there is a lot of down time in between getting blood draws every four hours around the clock, so if you are in the area, Cole can have visitors! He's armed with his pal Woody and a new Buzz Lightyear. Mr Potato Head has officially joined the crew too! Hopefully, it will keep him entertained along with some DVDs and the toys at the hospital.
We will probably be there for the rest of the week. It all depends on how he reacts to the change.
Monday, May 31, 2010
Friday, May 28, 2010
Miracle Noodles
Cole is a fan.
You can be too, I know I am! They are cleared for the diet. No carbs, no gluten, no calories. You can order here. Have them with tomato sauce, stir-fry, whatever! The perfect diet food. They taste just like regular pasta, and he loves them.
Now if they can only make donuts, pizza and Cafe Rio burritos with no carbs, no fat, no gluten and no calories!!!
You can be too, I know I am! They are cleared for the diet. No carbs, no gluten, no calories. You can order here. Have them with tomato sauce, stir-fry, whatever! The perfect diet food. They taste just like regular pasta, and he loves them.
Now if they can only make donuts, pizza and Cafe Rio burritos with no carbs, no fat, no gluten and no calories!!!
Tuesday, May 25, 2010
Plan B-version 47
I feel that we have gone through the entire alphabet multiple times with all of the "plans" that we have had this year. Here is the most recent (but it could change) version of what we are going to do!
Johns Hopkins has denied taking us on as a patient unless A. our insurance pays for it or B. we move to the Trans-Atlantic Area. Our current insurance has denied our neuro's request to send us to Baltimore. We could appeal, but it will take months and we don't really think they will give in as they have already previously approved Primary. We asked Hopkins if they would take us once we moved-if we started the diet here. They usually have a strict, "you can't start somewhere and then come here and start again" (kind of like, we don't clean up other hospitals messes) policy. However, they said that once we move, as long as we give them at least a month's notice, they will take us on. This was great news. We still feel that Cole needs to be there eventually and recieve services from their Epilepsy Center.
Cole's pediatrician and neurologist have convinced us with their concern that we just can't wait any longer. We have to take action because Cole is having way too many seizures. If he continues to develop new types at the speed he has been these last few months, who knows where he'll be at neuro-wise by the time we can get a job, finish school, move, etc. By the way-he had a 15 min partial yesterday. Day 12. At least that is a day and a half more than he has gone in the last three months, the longest he has gone without a partial is 10 days.
SO-one week from today we will be checking in to Primary to officially start the diet. I am confused, frustrated and more than a little scared. I know that when Brian and I felt that we shouldn't start in April, it was for a reason. Things change on a daily basis for us and so...this is the right thing to do, right now. We'll still go to Hopkins as soon as we can. Until then, I guess we just have to mentally prepare ourselves again for the big change that is coming.
Johns Hopkins has denied taking us on as a patient unless A. our insurance pays for it or B. we move to the Trans-Atlantic Area. Our current insurance has denied our neuro's request to send us to Baltimore. We could appeal, but it will take months and we don't really think they will give in as they have already previously approved Primary. We asked Hopkins if they would take us once we moved-if we started the diet here. They usually have a strict, "you can't start somewhere and then come here and start again" (kind of like, we don't clean up other hospitals messes) policy. However, they said that once we move, as long as we give them at least a month's notice, they will take us on. This was great news. We still feel that Cole needs to be there eventually and recieve services from their Epilepsy Center.
Cole's pediatrician and neurologist have convinced us with their concern that we just can't wait any longer. We have to take action because Cole is having way too many seizures. If he continues to develop new types at the speed he has been these last few months, who knows where he'll be at neuro-wise by the time we can get a job, finish school, move, etc. By the way-he had a 15 min partial yesterday. Day 12. At least that is a day and a half more than he has gone in the last three months, the longest he has gone without a partial is 10 days.
SO-one week from today we will be checking in to Primary to officially start the diet. I am confused, frustrated and more than a little scared. I know that when Brian and I felt that we shouldn't start in April, it was for a reason. Things change on a daily basis for us and so...this is the right thing to do, right now. We'll still go to Hopkins as soon as we can. Until then, I guess we just have to mentally prepare ourselves again for the big change that is coming.
Sunday, May 23, 2010
Cool Dude
The glasses are in, and we think they are working!
Cole has been outside 4 days in a row with NO partial seizures! If he makes it through the entire day today, it will be a record for partials in the last 3 months. We think that the new dose of Keppra is working, even if his drop seizures are still high.
Cole has been outside 4 days in a row with NO partial seizures! If he makes it through the entire day today, it will be a record for partials in the last 3 months. We think that the new dose of Keppra is working, even if his drop seizures are still high.
Thursday, May 13, 2010
Progress
It is inevitable that the night following a major seizure is filled with restlessness.
My dreams are always full of people dying, getting hurt, having seizures and I sometimes jump straight out of my bed screaming.
Last night, although my dreams were strange...no one died. No one seized. I actually even slept a little. That is what I call progress.
You've got to celebrate the little stuff!
My dreams are always full of people dying, getting hurt, having seizures and I sometimes jump straight out of my bed screaming.
Last night, although my dreams were strange...no one died. No one seized. I actually even slept a little. That is what I call progress.
You've got to celebrate the little stuff!
Wednesday, May 12, 2010
Unpredictable
It seems like even a little is too much nowadays.
Cole and I went to a friends house today for less than 2 hours and everything was low key. He fell asleep on the way home and then continued to nap once I got him out of the car. Later, we went and got Sampson's hair cut, even though we did less than a month ago. Maybe took an hour.
Even though we were out, which is rare...it was nothing too terribly exciting-not even a lot of people around. Still too overstimulating for my little boy.
Our timeline of partials every 6 to 10 days just got blown out of the water.
4 days. 18 minutes long, with a VERY long postictal period. This with the increased number of drop seizures, is getting hard on everyone.
It is like your child is a ticking time bomb, without the countdown clock.
We wondered how the rescue meds would affect him if he was partially conscious. Answer: NOT GOOD
In our world where everything is so unpredictable, it is the little stuff that is getting more and more important. Therefore, if you stop by-I am predicting it will be a royal mess.
Cole and I went to a friends house today for less than 2 hours and everything was low key. He fell asleep on the way home and then continued to nap once I got him out of the car. Later, we went and got Sampson's hair cut, even though we did less than a month ago. Maybe took an hour.
Even though we were out, which is rare...it was nothing too terribly exciting-not even a lot of people around. Still too overstimulating for my little boy.
Our timeline of partials every 6 to 10 days just got blown out of the water.
4 days. 18 minutes long, with a VERY long postictal period. This with the increased number of drop seizures, is getting hard on everyone.
It is like your child is a ticking time bomb, without the countdown clock.
We wondered how the rescue meds would affect him if he was partially conscious. Answer: NOT GOOD
In our world where everything is so unpredictable, it is the little stuff that is getting more and more important. Therefore, if you stop by-I am predicting it will be a royal mess.
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