Santa Claus...

I got Sophie all dressed up in her Christmas outfit yesterday and took her to the mall to see Santa Claus. The second I sat her in Santa's lap, she started bawling. I was very shocked. She is so use to being around strangers (between all of the therapy and doctor appointments) that it did not ever dawn on me that she might be scared of Santa. Hopefully, when we go back with Haley, she won't be so scared.

Test Results...

Sophie's neuro called tonight with the results of the blood test. Everything looked fine. Her Depakote level is 99. He said that when it gets over 100 is when you start seeing some bad side effects. He also said that most kids can tolerate up to 120. Her platelet count was 312,000 (the normal range is between 140,000 - 350,000).

Now here is where I am lost... Of course I think of these things late at night and not when I am on the phone talking with the neuro. Is it good that Sophie's Depakote level is so high with being on a not so high of a dose? Does this mean that since her levels are so high and she is not seizure-free that she will not become seizure-free on Depakote?

We also discussed genetic testing. She will be having another test called microarray analysis done once I have cleared it with our insurance. I was naive in the beginning and believed that whatever test our doctor (who is in-network) ordered would be covered under insurance. When Sophie was tested for ARX gene mutation, the test was performed in a lab that was not covered under our insurance and we were billed around $950 (this amount has been reduced to around $650 and we are still debating it). Our appointment with the pediatric neurologist that specializes in genetics is not until June 2007 (he only sees patients twice a month). In the end, I really do not think it will matter because I believe that whatever caused Sophie's brain abnormalities is very rare and will not be discovered anytime soon.

Oh, and we are also increasing her Depakote to 625mg a day (250mg in the morning and 325mg in the evening).

More babbling and more crawling...

Sophie is babbling more. Along with dadada, she is now saying mamama and bababa on a more consistent basis. Her crawling is getting better but not quite completely there. I am waiting for the day when she sees me across the room and just takes off to get to me. Usually, when she sees me, she just starts bawling and then crawls towards me (which is better than before when she would start bawling and just sit there). The only time I ever see her move fast is when it is diaper changing time. The second I get that diaper off of her, she flips over and sits up with such strength that I have a hard time stopping her.

The Battle of Zonegran...

I am so tired of trying to get Sophie to take Zonegran. She doesn't even like applesauce now because that is what I usually put it in. It is such a battle to get her to take it. So tonight during dinner, I sprinkle a little bit of Zonegran on a spoonful of food and try to get her to take it. She gags and I am frustrated. I am tired of the battle. So I put the cap back on the Zonegran. What am I to do??? Hmmm, maybe she can swallow it whole. I stick the pill in her mouth and hold out her sippy cup. She doesn't want to take a drink!!! She just starts gumming the pill. Oh no, the pill is going to open up in her mouth and she is really going to gag. This is going to be a disaster. Instead she swallows it and then takes a drink. I was so shocked!!! So I tried the second pill and she does the same thing. End of the battle (hopefully)!!! Yeah - we all win!!!

Double Ear Infection...

We took Sophie to the pediatrician yesterday. She has a double ear infection and is now on antibiotics. Just one more medication to add to the list. Though, we did successfully wean the Topamax last Thursday (successfully means we were able to wean it without an increase in seizures). So now she is on 150mg of Zonegran and 500mg of Depakote. She gets bloodwork done on Monday to find out her Zonegran and Depakote levels. Hopefully, we will be able to start weaning the Zonegran soon. Depending on how her Depakote levels look, we may increase it. I am not sure what the maximum dose of Depakote she can be on. The Depakote seems to be somewhat controlling her seizures. It seemed like the number of seizures were steadily increasing but now they have stabilized and even slightly decreased (on average, she has about 60 - 70 seizures a day). Ear infections (or any kind of illness) can cause seizures to increase so I anxious to see how she will do once she feels better. It is possible that the Depakote is working better than we think. Is it too much to hope for a seizure free Christmas?!?! She did sleep through the night for the first time last Christmas Eve so maybe...

Ophthalmologist...

Sophie had her eye appointment today. Everything checked out fine. Vision looks great and eyes look healthy. Yeah!!! Though, Sophie wasn't too thrilled with the appointment. She gets very mad if you touch her face. Actually, her reflexes kick in when she sees your hand coming towards her face. She is very quick. She would swipe the lenses right out of the doctor's hand in a blink of an eye. Hmmm...she would make a very good thief. Actually, now that I think about it, she does this a lot. She is very sly about it. She will lean forward and put her hands down like she is just catching herself and the next thing you know she has some small chokable object in her hand. First of all, I don't even know how she eyed the object. Second of all, I could have sworn I grabbed her before she had a chance to grab the object.

Appointment...

We had an appointment with Sophie's pediatric neurologist yesterday. We received a lot of answers and learned a lot about Sophie's condition. We also received a few articles to read to learn more about brain development. Sophie's brain abnormalities (abnormal cerebral glucose metabolism) is most likely what is causing the seizures. But the real question is...What is causing the brain abnormalities? The doctor went into a theory on what possibly caused the brain abnormalities that was very interesting (I am not going to even attempt to rehash what he said but it was along the lines of genetics and malformation of cortical development). He referred us to a pediatric neurologist that specializes in genetics. He also referred us to a pediatric ophthalmologist...something to do about the retinas in the eyes. As you can tell, a lot of the information we learned is way over my head and I have a lot of research to do to better understand it all.