- Iowa Methodist Medical Center
4th Floor Younker #406
Attn: Rose Sproul
1200 Pleasant St
Des Moines, IA 50309-1453
I will share with you the pictures of Delaney with Grandma and Mason with Grandma and Grandpa taken in Iowa City. They bless my heart... Although you can't see Mason, Grandma and Grandpa's faces...the picture is priceless. Lauren and Lindsey will finally be able to visit Grandma this weekend! They have colored some pretty pictures for her to hang in her room. I will also capture some photos of them.
I am trying to remember what has happened with L&L since I last spoke of them. We traveled to Mayo Clinic for their 3 month appointment with their neurologist. She decided to increase their new medication by doubling the amount. We are still waiting on insurance approval for this but, hopefully will get that very soon. The dose they are on now is not working...if we do not see a decrease in seizures in the next 2-4 weeks on the increase of this medication, we will discontinue it. This would be very disappointing as this drug is "supposed" to hold great promise for patients with Dravet Syndrome.
Back in September when I gave a testimony to the Legislative Committee for the Cannabidiol Law, I was able to meet a neurologist by the name of Dr. Joshi with the University of Iowa who I had hoped to get the girls to see back when we got the Dravet diagnosis. Unfortunately at the time it didn't work for us to do so but, after talking with her at the meeting and following up with her via email, I was able to ask if she would be willing to see the girls and enroll them in the clinical study for Epidiolex. I received blessing from our Mayo doctor to follow with Dr. Joshi and the girls have their first appointment with her on October 24th. To make this an even better story, Dr. Joshi is starting a clinic at Childserve in Johnston and our appointments will be held there. So, no more driving three hours one way to see a neurologist. Now we only have to drive 20 minutes! You don't know how delighted I am for the travel reprieve. We have graduated from three days to Pittsburgh to six hours to Rochester to 40 minutes to Johnston! Dr. Joshi is very knowledgeable about cannabis and CBD. She gave our legislators a crash course on CBD and Epidiolex and I know they all came out of that meeting much more educated than they did when they walked in. If only they all would listen and open up their closed minds... From what I have been told, the girls will qualify for the clinical trial for Epidiolex starting in the spring. I am anxious to meet with Dr. Joshi and learn more about this treatment option for our girls. For a little refresher, Epidiolex is a pharmaceutical drug from GW Pharma made with pure CBD from the cannabis plant. In other exciting cannabis news, Charolette's Web hemp oil will soon be available to be shipped within the United States. This is exciting news for intractable epilepsy patients around the country! There are thousands on the wait list to receive this medication! Meanwhile, the Iowa Cannabidiol Law went into effect in Iowa on July 1, 2014 and as it stands right now, we will not be able to get a medical card for our daughters until at least January 30, 2015. Don't even get me started on that one....
The girls are struggling with a lot of seizures this month. I have tried to be better about keeping an accurate count of large seizures. If I were to keep track of the total of all seizures, I would be doing nothing but keeping track of seizures all day and probably night. Unfortunately, a week ago today Lauren was standing not 5 feet away from me and went down in a seizure and cut her eye open on her eyebrow with her glasses. We took a trip to the Urgent Clinic for some glue and thank goodness she did not end up with the black eye the doc and and I were sure she would have. A day later Lindsey went down much like Lauren, luckily without her glasses on and ended up with a bruised temple... Seizures suck!
On a brighter note, the girls participated in Special Olympics bowling on Thursday. Unfortunately, Lindsey bowled on lane 10 and Lauren on lane 30. Made it quite difficult for me to watch them both bowl but, we made it work with frequent trips back and forth. Lauren placed first in her division and qualified for the state tournament. Lindsey placed third in her division. If you know Lindsey you know she is a fierce competitor. Luckily, she does not understand that Lauren's blue ribbon is better than the yellow ribbon that she received. She cracked me up when she said, "can Lauren have a yellow ribbon just like me?" In the long run, she did have a higher score than Lauren but unfortunately was placed in a different division. I was just happy that both girls made it through the mass chaos without a seizure! If you ever want your heart to be blessed, you should volunteer for a Special Olympics event. Every singe competitor was applauded and cheered for after every single ball thrown. There were children there volunteering who made my heart jump for joy. They loved on the kids and made them feel like true champions. God bless those kiddos! We could all learn a lot from the children who look beyond differences and embrace everyone for who they are. Their parents should be so proud.
It was a week of many tears of sadness and desperation and others shed of joy. I thank God for His promises. I hold tight to Joshua 1:9, "Have I not commanded you? Be strong and courageous. Do not be frightened, and do not be dismayed, for the Lord your God is with you wherever you go.” Although the road we are traveling down is uncertain, one thing is sure...we do not walk it alone. Don't forget to tell those you love how much they mean to you. Visit when you can and hold dear the time you have. We are all only guaranteed right now.
