Another EEG (her 8th one)...

Sophie had another one hour EEG today. We wanted to get a baseline at how her EEG looked since being on Clobazam and also to have something to compare to after she starts the ketogenic diet. Her EEG has not changed since the last one she has had which means that it is still relatively bad. In technical terms...front and temporal epileptic discharge consisting of spike and sharp wave discharges, sleep activity looks good and her background rhythm looks good with no suppression.

Thank goodness for family...

Last weekend, Brandon decided to take a guy's trip to Florida to see the Cardinals play in spring training. Actually, it was a long weekend. Brandon left on Thursday (after being out of town Monday through Wednesday for work) and came back on Monday. Luckily, I have a very supportive sister who took me in for the weekend. Actually, her entire family took me in. They were all planning on going to their condo on the lake for the weekend and invited Sophie and me along. We had a wonderful time and it saved me from losing my mind. I look forward to the weekends more now than ever. The weekends are a time for me to get a real break from being a mom and all the responsibilities that come with it (especially being a mom to a child with special needs). When Brandon told me he was planning on taking this trip, I lost it. The thought of not having that much needed break was more than I could handle. My weeks are jam packed with doctor appointments, therapy appointments, researching new treatments, etc. Just to give you an idea of a typical week, here are our appointments this week: Monday - dentist, Tuesday - physical therapy, Wednesday - pediatric neurologist and EEG, Thursday - casting for foot orthotics, developmental therapy, follow up with ENT, fitting for ear plugs, fly to Chicago, Friday - fitting for new cranial molding helmet. I wish I could say that our weeks aren't usually this crazy, but they are. If it is not one thing than it is another. I keep thinking that things are going to slow down, but they don't. In two and half weeks, we will be leaving for John Hopkins to start the ketogenic diet. Hopefully, this will be it. Hopefully, the diet will be Sophie's "miracle drug" to stop the seizures. Hopefully, in a few years from now all of this will be a distant memory. In the meantime, thank goodness for family.

Dentist...

Yesterday was Sophie's first trip to the dentist. Luckily, she had her two older cousins, Colin and Nicholas, show her the ropes. My sister, Erin, and I took all three kids to the dentist at the same time. All three had great checkups!!! Sophie officially has nine teeth (I think there is another coming in but it hasn't broke through the gums yet). She has five front teeth and four molars.

Clobazam and seizure update...

Sophie is now on 10mg/day of Clobazam (5mg in the AM and 5mg in the PM). This is the maximum dose she can be on. Clobazam seems to be somewhat controlling her seizures (it is always hard to know what is working or not working...between ear infections and teething, we never know whether it is the drug or the environment). She has, on average, about 25 seizures a day (down from around 50 to 75 a day). Hopefully, with the ear tubes, we will no longer have to worry about ear infections and antibiotics.

On the go...

Sophie is becoming much more mobile. She is constantly pulling herself to a stand and cruising around anything she can get her hands on. Ever so often, she is able to stand for a few seconds without holding on to anything. She is slowly gaining her balance. Unfortunately, she is not gaining enough balance quick enough to enable her to walk. Between her balance issue and mild hypotonia (low tone), Sophie's physical therapist recommended that Sophie get foot orthoses. So Sophie will be getting submalleolar/UCB inserts. The way her therapist explained it to me was that this will even out her walking surface so that she is not so wobbly and it will allow her to strengthen her leg muscles. The downside is that the inserts do all the work which prohibit her ankle muscles from strengthening. So once Sophie is up and running, we will then have to start weaning the inserts so that her ankle muscles can strengthen.

Ketogenic diet...

We decided to do the diet at John Hopkins and are scheduled to start the diet on April 16th.

Kindermusik...

Sophie loves Kindermusik. It's a place where we go to sing songs, dance, and play with musical instruments. The class is every Monday. Two weeks ago, Grandma Debbie took Sophie to Kindermusik so I could have a break and get some things done around the house. This past Monday, Brandon took the day off work and took Sophie to Kindermusik (I tagged along to take pictures).

On our way to Kindermusik (crossing her feet like always).

Daddy and Sophie playing with the egg shakers.

Clobazam...

We finally got Clobazam in the mail two weeks ago. It only took five weeks to be shipped from Canada. Luckily, we bought a three month supply. Sophie started the Clobazam the next day which replaced the Clonazepam. She started out at 2.5mg/day and is now at 5mg/day. She is still currently on 150mg of Zonegran. She is tolerating the Clobazam fairly well. We have seen a slight decrease in seizure and will continue to increase the Clobazam 2.5mg each week until we reach 10mg/day.

Ear tubes...

Last week Sophie got another ear infection. Needless to say, she was put on yet another round of antibiotics (6th round in the last 3 months) and we scheduled the appointment for ear tubes. She actually got the ear tubes today. We arrived at the hospital at 6:30am and we were on our way home by 9am. As always, Sophie did amazingly well. She did not get nauseous and she cried just a little bit. Actually, she has been crying a little bit on and off all day today. It is kind of crazy. She will be playing and then will just make the saddest face and start crying. It lasts for just a couple of minutes and then she is off playing again.

Chicago...

Sophie and I have been to Chicago twice since my last post (sorry I am not being very diligent in updating the blog). Our first trip to Chicago was three weeks ago with my sister, Erin, and her two sons, Colin and Nicholas. We drove up on Thursday and stayed with my other sister, Erica, and her husband, Ricky, until Sunday. I have to admit, the thought of being in a car with 3 young kids seemed overwhelming at first but it went surprisingly well. There was absolutely no crying or screaming or fighting - wow!!! It took us about 10 hours to get there (it should normally take about 5.5 hours). We left on Thursday around 12:45pm (right after picking Colin and Nicholas up from school) and stopped around 2:15pm to have lunch. That was our first surprise...that the kids lasted until then to eat lunch all the while not complaining about being hungry (hmmm, maybe the fasting for the keto diet will go better than I think). Then we drove about an hour and a half to the Children's Discovery Museum. The kids absolutely had a blast playing and we ended staying there from 5:30pm until they closed at 8pm. It was completely empty since it was a school night. The museum allowed us to bring in food so I left to get dinner while all the kids continued to play. By the time we reached Erica's and Ricky's house, the kids were fast asleep and transferred from the car without waking up.
We had a fun-filled weekend between going to Chuck-E-Cheese, bowling, playing with Sylvester the cat, etc. Sophie's appointment for her helmet went well. They made minor adjustments and we were on our way. The trip home went as smoothly as the trip there and we only made one stop to have lunch. Thank you again, Erica and Ricky, for your wonderful hospitality. We cannot wait to come visit again.

Our second trip to Chicago was last Friday. This was a fly there and fly back in the same day trip with just Sophie and me. Sophie is such a wonderful traveler. Though, the flight home was challenging with having to sit in a middle seat while holding Sophie in my lap. The plane was about 45 minutes delayed coming into the airport. Once the plane arrived and people started getting off the plane, I noticed that Sophie had a smelly diaper. So I rushed her to the bathroom to change her diaper and by the time I got back, they already started boarding. We were flying Southwest so there is no assigned seating but Sophie and I get to pre-board. So I rush up to the front and realized that I cannot find my boarding pass. Argh!!! So I got a new boarding pass and by the time we got on the plane there were only middle seats left. We sat in between a male college student and an older lady. Both were very understanding. Sophie was very active but at least she was happy. Her appointment went well. Her head shape is improving. This time they took measurements and pictures along with making minor adjustments to the helmet. Her cranial vault asymmetry went down from a 7mm to 4mm. Her skull base asymmetry went down from 5mm to 3mm. This is great improvement considering her old orthoticist said that there was nothing else we could do!!!