Halloween

We barely made it home in time for Halloween. Florence, Will, my mom, and I took a quick trip to Montreal with Florence. We left the Wednesday before Halloween and returned Sat night at 5:15pm. The trip to Montreal was to have Florence visit with a very accomplished neurologist who wrote a book on Rasmussen's Syndrome. Our doctors at Cleveland Clinic are concerned that Florence has Rasmussen's but there are a few things that are keeping them from making the diagnosis. While in Montreal, we also met a neuro immunologist who worked under Dr. Rasmussen. Both doctors were helpful but we are still without a plan at the moment. So this week, we are going back to Cleveland on Thursday for Florence to be admitted over the weekend for EEG studies to see if anything has changed in 8 weeks since we were last there.

I have some pictures of Laura Mish from Halloween. While we were away, she lost her first tooth. Luckily we were able to communicate by scype while in Canada. The tooth fairy came on Halloween night! She was Dorothy from the Wizard of Oz this year. The interesting thing is that she'd never seen the Wizard of Oz. We finally rented the movie for her yesterday. Mary Ann and Julia were so helpful while we were in Montreal. Here are some pictures of a Halloween Tea that Mary Ann and Laura Mish went to with Laura's friend Renn.

Florence Update

It's been a month since we returned from our stay at the Cleveland Clinic. We've been quiet on the updates because there really hasn't been much to report. Florence went through one IVIG treatment at Duke 3.5 weeks ago. We saw some successful result with that treatment for about 2.5 days where her seizures were down, she slept well and had more energy. But as quickly as the success came, it also went. And we've had a few sporadic troubling days where Florence is so wiped out that she really wants to sleep and just be.

Today, Florence was admitted to UNC Chapel Hill hospital for the Ketogenic Diet. You may think "Diet" can't be all that difficult but this diet is very scientific and precise as we will have to learn how to mix certain foods like fats, carbs and sugars to provide her a meal where what she burns is mostly fat. We purchased a gram scale and will begin the education tomorrow. She is fasting today and is doing okay. It's so hard for a 4 year old to fast but Florence is so tough and seems to weather all of these challenging situations heroically.

She will be at UNC until Wednesday. Then she comes home and hopefully will have her second IVIG at Duke either Thursday or Friday. We are desperate to find a treatment to help her with whatever disease is causing the seizures and everything else. She is still not walking or sitting independently.

All that said, she still finds a smile, a giggle, a mischievous act to bring everyone around her to pieces! You can't help but love this little girl!

Pumpkin Patch

This weekend, my high school class celebrated it's 20th reunion! Yikes that is old! It was crazy seeing so many people I really have not seen for 20 years.

We stayed at the Lake and Beach and Sarah Gayle Price drove out to visit. My parents, Julia, the girls and Will and I went to the pumpkin patch. It felt kind of like a normal day for us which we cherish. Wonderful to have help with the girls, eating well, and being outside.

Friends on the Block

Last weekend we had a block party. On our street, there are 14 kids under the age of 7. It was so nice to gather and obviously Julia is a big hit with all of the neighbors' kids!

Florence Update on Trip to Cleveland Clinic

My good friend Abby suggested that using the blog to provide updates on Florence might be more efficient as I know some of you receive emails and some do not. Here goes a brief history of the long 18 months we've had figuring her illness out.

Some of you may know that Florence is very sick right now. We don't know what is causing her sickness but she is having trouble walking, standing, sitting on the floor, with small absence and myoclonic seizures. We've been to Duke, UNC CH, Johns Hopkins, and University of MD. This past March we finally got her to the Cleveland Clinic and have a great husband/wife team who have been taking care of us. Florence's challenges have been going on for a quite a while with differing degrees of severity. The only diagnosis which is actually in question now is whether or not she truly has Celiac Disease.

Will and I recently took a trip to Oregon to run Hood to Coast Relay race. It was an enjoyable time for us to be away in Oregon and doing something we both love which is to run. But when we returned Florence had regressed and we felt that we should get her to Cleveland pretty quickly. We left on Wed Sept 2nd and drove nine hours with my mom with us and arrived in Cleveland around 1am. On Thurs, Florence was admitted to the hospital for testing. My dad flew to Cleveland to provide more support as we weren't sure how long we were going to stay.

Laura Mish was home as she is 5.5 and has many activities including Kindergarten, violin, soccer and gymnastics. Our au pair Julia helped us tremendously. Will's mom ended up staying at our house for almost a week. And his dad, Pops, came over for Laura Mish's first soccer game.

Florence had a birthday during all of this chaos. So the Cleveland folk drove 4 hours to Charleston WV and the Durham folk drove 4.5 hours north and met us there for two nights to celebrate.

We'll provide more detail on Florence as well as pictures in posts coming.

Florence's 4th Birthday in Charleston WV

As I mentioned in a previous post, Florence turned four years old on September 8th. This followed Labor Day weekend which we spent half in Cleveland. We wanted to throw her a big family party so decided to do this in West VA. We made a flourless chocolate cake in the hotel room kitchen (Florence is on a very restrictive diet). Without a mixer, we had to pass the bowl around for whipping the egg whites. Here are some pictures from the party, cake making, swimming in the pool (coooold!) and others.

More Birthday Pictures

More West VA Birthday Pictures

More pictures from the trip to West VA.

Laura Mish's First Soccer Game

As many of you know, we were in Cleveland at the Cleveland Clinic when Laura Mish had her first soccer game. But she still had quite a fan following as her Pops, Grandma and Julia attended and cheered her on!

Soccer Player and A New Haircut

Laura Mish joined a soccer league today. She has new cleats, soccer shorts, shin guards, and soccer socks that she has worn all day today. Florence got a big hair cut over the weekend. She got 4 inches taken off and looks so cute! She is spending the week at Mimi and Paw Paw's house.

Another trip to Cleveland

Florence and Will have now made 5 trips by car to Cleveland. We loaded up Laura Mish and our new Au Pair, Julia, for this most recent trip to Cleveland. In case you didn't know, this is a 9 hour trip by car. We decided to leave at 11am on Thursday August 6th so that we could actually see the landscape as opposed to our usual trips up there in the dark. Laura Mish started asking us in Greensboro how much farther we had to go. It didn't get easier so we ended up making some stops in West VA and Ohio for dinner. We made it to Cleveland at 9pm that night. Everyone slept kind of okay. Then Florence, Will and I started our day at the Clinic at 9:30 the next morning. Laura Mish and Julia went to kid museums in Cleveland all day. They had a blast. Florence handled her EEG and treatment fairly well. We decided to hit the road on Friday at 3pm and head to Smith Mtn. Lake in VA. We got there around midnight which allowed us some rest the following day. It's been crazy!