Follow up at Gillette

It's taken me awhile to get this written! Last Wednesday we took Luella to the cities to have a follow up appointment with Dr. Wical. My parents came the night before to watch the other kids and we left early in the morning for Gillette Children's in St. Paul. We were thankful that the winter weather hadn't hit yet and the drive went well.

Dr. Wical was very happy with how well Luella is doing. We are currently at 4 weeks without a seizure and hope to sail through the holidays without any problems! Luella does have some balance issues. Dr. Wical saw first hand how she falls down quite often. The stumbling could be a side effect of the medications or caused by Dravet itself. We are still in the process of getting Luella to her target dose of Clobazam. Dr. Wical said that it sometimes takes kids a little while to get used to the medication and then things improve. A month after Luella is at her target dose (which we will hit on Thursday) we will have physical therapy assessment to see if there is a need for ongoing physical therapy.

One thing that doesn't help Luella with her balance is the fact that she loves to walk on her tip toes. I had gotten Luella a pair of squeaky shoes when she first started walking. I decided to get her another pair to wear now. She loves to wear them and since you have to walk flat on your foot to make them squeak, she tends to walk better and is more stable when she wears them. An added bonus - I always know where she is!!

We are so thankful for how well Luella is doing. We know that there are so many kids with Dravet who aren't as lucky as Luella. We ask that as you pray for Luella that you also remember the many other families that are affected by this terrible disease. Thank you!

Now I need to get busy with my Christmas shopping!!

Thankful!

This Thanksgiving we have much to be thankful for!
We are thankful...

• That Luella has gone 3 weeks and counting without a seizure.
• For all the prayers for Luella and our family.
• That Cigna and Berkley have agreed to cover Luella's stiripentol - her awesome new seizure med that is imported from Europe and quite costly (but very cost effective when you consider the medical costs of Luella's uncontrolled seizures).  We just got the call yesterday letting us know!
• For all our family and friends who donated to the Dravet Syndrome Foundation in honor of Luella!  THANK YOU!  

Of course we are also thankful for the health of our other three children, our home and all the other many blessings that our Father in Heaven has given us. We hope you all had a very blessed Thanksgiving!

Give a Gift

November happens to be Epilepsy Awareness month. We think Epilepsy in general needs attention, but more specifically we want a cure for Dravet Syndrome!! There is currently a fundraising effort to benefit the Dravet Syndrome Foundation (DSF) and two anonymous donors have agreed to match funds up to $10,000 until midnight November 20th. That's $20,000 to benefit Dravet research!!

We hope and pray for a cure for Luella and the DSF is working towards that. Please, if you are able to make any kind of a donation - no matter the size - please go here and make a donation in honor of Luella and the cure we pray for!

Donation Website:
http://www.crowdrise.com/piperssong

Thank you so much for your continued prayers and support! Luella has gone a week now without a seizure. We pray that is the start of another record run... let's beat 10 weeks!!


More about the Dravet Syndrome Foundation (from their website)
http://www.dravetfoundation.org/
"The Dravet Syndrome Foundation is a volunteer-based, non-profit organization dedicated to aggressively raising research funds for Dravet syndrome, a rare and catastrophic form of epilepsy beginning in childhood, and related conditions. By offering research grants for syndrome-specific research with a novel approach, the DSF can move researchers and the medical community forward to find better treatments and a cure while assisting afflicted individuals and their families.

The Dravet Syndrome Foundation has awarded over $800,000 in research grants for Dravet-specific research - more than any other nonprofit organization. We have also awarded over $15,000 to families through our International Patient Assistance Grant Program."

Tonic Clonic (Grand Mal) This Morning

Luella ended up having another seizure Saturday morning around 9:30AM. Jim was holding her when it started and it was a Tonic Clonic (aka Grand Mal) seizure - her whole body was convulsing. We ended up giving her two doses of the Midazolam and I rushed her to the ER. Thankfully the meds did stop the seizure in under 6 minutes but we still needed her in the ER to be watched for respiratory distress (after having that much medicine).

In the ER, they took a little blood, did an influenza test and a strep test. The tests came back and Luella DOES have strep! A week ago Thursday they did a strep test and that one was negative. As much as I hate taking her to the ER, I'm glad we ended up there today so we could figure out what was going on! She is on antibiotics now and hopefully in a couple days she will be feeling much better and we can get beyond these seizures once again!

Thank you to all of you who continually pray for Luella!!