Olivia has been approved for a grant through the Dravet Syndrome Foundation that will provide her with a Coolsport Cooling Vest and an Emfit movement/seizure monitor!!!! This is a huge, awesome, amazing, wonderful, LIFE-CHANGING gift!! http://www.dravetfoundation.org/pag.html
The Coolsport Vest arrived today and the Emfit Monitor is on its way. The vest is the best one available to help her endure the too-hot temps of summer. Some days are too hot for Olivia to even go outside at all (as the heat is a seizure trigger) and having this vest will allow her more freedom. This vest is not likely to be covered by insurance and costs $130 before shipping. http://www.coolsport.net/index2.html
The Emfit is a monitor for her bed that will detect seizure movements or if she escapes the bed. Olivia is at great risk for SUDEP and nocturnal seizures. This monitor will afford me more peace of mind at night as it will be able to detect and alarm during seizures that I could otherwise sleep through. This monitor is NOT covered by insurance, and it costs at least $600 before shipping. http://www.emfit.com/en/care/products_care/movement-monitor/
Through this amazing grant program, The Dravet Syndrome Foundation is providing these two LIFE-CHANGING items to Olivia, FREE. They are able to provide grants such as this through the generosity of donations acquired either directly or through fundraising events. I strongly encourage you to donate, if at all possible, any amount, because it will go toward helping change the lives of other sweet kiddos like Olivia. There was NO OTHER way we were going to get these items as funds are so limited for us. This is truly a blessing I could never say "Thank you" enough times for.
Please visit The Dravet Syndrome Foundation at http://www.dravetfoundation.org/, to see the amazing things they are doing and how you can join them!!
My heart is SO full of love and gratitude!
-Hilary
Wednesday, June 8, 2011
Monday, June 6, 2011
Summer, Summer, Summertime! :o/
Summertime temps are definitely here in OKC! Dravet causes Olivia to be extremely heat/light sensitive. Some days/times are better than others, but we are certainly seeing the effects of summer. Just about any time she walks outside, she has a brief seizure. However, she did have one the other evening that was not brief, and we ended up having to call the ambulance. She managed to avoid the hospital, thankfully. She had been playing outside for a little while and was just getting too active--Bam!--I looked away for a second and when I looked back, she was down on the ground seizing. She did play outside yesterday for quite awhile in her baby pool and seemed to do quite well. The only catch was her nap afterwards---it was four hours long! And, it was only interrupted b/c someone rang our doorbell. So, it looks like even if she doesn't obviously seize in the heat/light, it is certainly wearing her out. We are going to continue making the most of the early hours of each day and getting her out while we can.
In other news, it's almost her 2nd birthday!!!! She turns the big TWO on 6/13. We are having a little party here at the house. I waited so late to get things planned that it might just be us here with a cake and some presents, but at least she will LOVE her presents. I can't wait to give them to her. She has a Wish List on Amazon.com, under the email: hray75@yahoo.com.
In order to deal with her increased seizure activity, we have finally increased her medication a bit. She hasn't had an increase since last fall, which is VERY good! But, summer carries such extreme triggers that it is apparent her previous dosage will not safely get her through. So, we started the new dose a few days ago. It usually takes a week or two for the side effects to go away when we do this. In the meantime, she has been quite a handful---more than usual!
I am glad to finally be out of cold/flu season even in spite of the difficulties of summer temps. Olivia still must be very protected from illness (as always--this will never change for the rest of her life), but it has been a great relief that not as many illnesses are swirling around the population. I tell you the cold/flu season will make you a bonifide germa-phobe when you have a compromised child. So, I am glad to get a little break from the extreme anxiety of that issue.
We are absolutely loving our nurse!! She has been an amazing help. The agency is working hard to find us a second nurse, so we can get our full approved hours. Please pray that the right person comes along to fill that position for us.
Well I gotta go. I am SO tired. Olivia got me up at 6:00 this morning. :o/ So, I am already ready to get back in bed!
Much love, -H
****Addendum: We ended up not going through with the med increase (Keppra), b/c she wasn't getting any obvious benefit from it, yet she was experiencing too many negative side effects. It was decided to go back to her previous dose and just hold steady there.
In other news, it's almost her 2nd birthday!!!! She turns the big TWO on 6/13. We are having a little party here at the house. I waited so late to get things planned that it might just be us here with a cake and some presents, but at least she will LOVE her presents. I can't wait to give them to her. She has a Wish List on Amazon.com, under the email: hray75@yahoo.com.
In order to deal with her increased seizure activity, we have finally increased her medication a bit. She hasn't had an increase since last fall, which is VERY good! But, summer carries such extreme triggers that it is apparent her previous dosage will not safely get her through. So, we started the new dose a few days ago. It usually takes a week or two for the side effects to go away when we do this. In the meantime, she has been quite a handful---more than usual!
I am glad to finally be out of cold/flu season even in spite of the difficulties of summer temps. Olivia still must be very protected from illness (as always--this will never change for the rest of her life), but it has been a great relief that not as many illnesses are swirling around the population. I tell you the cold/flu season will make you a bonifide germa-phobe when you have a compromised child. So, I am glad to get a little break from the extreme anxiety of that issue.
We are absolutely loving our nurse!! She has been an amazing help. The agency is working hard to find us a second nurse, so we can get our full approved hours. Please pray that the right person comes along to fill that position for us.
Well I gotta go. I am SO tired. Olivia got me up at 6:00 this morning. :o/ So, I am already ready to get back in bed!
Much love, -H
****Addendum: We ended up not going through with the med increase (Keppra), b/c she wasn't getting any obvious benefit from it, yet she was experiencing too many negative side effects. It was decided to go back to her previous dose and just hold steady there.
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