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!!

Another Seizure

Luella had another seizure this afternoon (Friday). I was getting supper ready and Luella had just walked into the playroom. I was just about to go peek at her to see what she was doing and she let out a loud scream and was crying hysterically. I ran to her and she was just sitting there crying so hard. I've NEVER heard her cry like that! I was so scared, I didn't know what happened to her. I thought she was hurt. I picked her up and then it was apparent that she was seizing. I laid her down then grabbed the phone to call Jim and got her meds. I gave her the Midazolam immediately. It didn't appear to be working quickly and she was turning blue - not breathing well at all. I quickly grabbed my coat and hers and the diaper bag and headed to the van.  As I was throwing the bags in the van Luella let out a sigh and then coughed a couple times. I looked at her and she was just closing her eyes. Jim pulled in the garage then and we took Luella inside.

Her seizure did stop after 6 - 8 minutes. It's hard to know if the Midazolam is stopping these seizures or if the Stiripentol is making them that short. We were able to talk to the doctor today and we decided to add Clobazam to Luella's drug list. Clobazam, thankfully just got FDA approval within the last few weeks. It won't be available in the US until after January so we will have to import it for 2 - 3 months. Clobazam, Depakote and Stiripentol are three drugs that are most often given to Dravet kids and they are supposed to work well together.

Luella has been teething as I mentioned before, but also has a cold - runny nose and just yesterday started coughing now too. Being sick is not a good thing when you have Dravet! We are hoping this new combination of drugs will help get us back in the running to beat our record of 10 weeks without a seizure!!

What a pose! Luella is ready for candy!

Luella was our little Lady "Love" Bug for Halloween. Her baby doll even dressed to match!