My appologies for not updating in over a month. We've had a lot happening in the Current household...
With the approval of the Medicaid Home Health Waiver, we've received nursing care for Drake. We have LPNs in the house about 12 hours each day to help care for him. What a huge weight that has lifted! We've been working on projects around the house that we weren't able to get to in the past, spending time with a neglected six year old, relaxing for a change, and occassionally DC and I even get out of the house together without the kids.
Drake started on Stiripentol (a drug specifically designed for Dravet Syndrome, not yet FDA approved so we have to get it from Europe). He started it six weeks ago and has now gone 35 days without a large seizure! He's still having small seizures daily, but nothing that stops him from enjoying being three. The only downside is that it seems to be making him more sleepy, so he's taking an extra nap each day. We were ecstatic to learn insurance would cover the bulk of the cost with no issues and waiting to find out if BCMH (Medicaid for children with medical handicaps in Ohio) will pick up the balance.
Thanks to DCs amazing coworkers, we quickly raised the funds needed for the Emfit movement monitor. It is now installed under his mattress, but thankfully we've not yet had to find out whether it works or not.
And just last week, I got together with a couple other local Dravet moms to begin planning this year's Dravet Syndrome Foundation's Steps Toward a Cure charity walk in Toledo. The walk will take place at Swan Creek Metropark on September 17th. I'll be sharing information on how you can register to participate or make a donation in the near future. In the meantime, if you work for or know of a company that would be interested in sponsoring the event or making a donation for the silent auction/can raffle, please contact me as soon as possible.
I hope you are all out there enjoying your summer and living life to its fullest...I know we are!
With the approval of the Medicaid Home Health Waiver, we've received nursing care for Drake. We have LPNs in the house about 12 hours each day to help care for him. What a huge weight that has lifted! We've been working on projects around the house that we weren't able to get to in the past, spending time with a neglected six year old, relaxing for a change, and occassionally DC and I even get out of the house together without the kids.
Drake started on Stiripentol (a drug specifically designed for Dravet Syndrome, not yet FDA approved so we have to get it from Europe). He started it six weeks ago and has now gone 35 days without a large seizure! He's still having small seizures daily, but nothing that stops him from enjoying being three. The only downside is that it seems to be making him more sleepy, so he's taking an extra nap each day. We were ecstatic to learn insurance would cover the bulk of the cost with no issues and waiting to find out if BCMH (Medicaid for children with medical handicaps in Ohio) will pick up the balance.
Thanks to DCs amazing coworkers, we quickly raised the funds needed for the Emfit movement monitor. It is now installed under his mattress, but thankfully we've not yet had to find out whether it works or not.
And just last week, I got together with a couple other local Dravet moms to begin planning this year's Dravet Syndrome Foundation's Steps Toward a Cure charity walk in Toledo. The walk will take place at Swan Creek Metropark on September 17th. I'll be sharing information on how you can register to participate or make a donation in the near future. In the meantime, if you work for or know of a company that would be interested in sponsoring the event or making a donation for the silent auction/can raffle, please contact me as soon as possible.
I hope you are all out there enjoying your summer and living life to its fullest...I know we are!
