So far, so...good?

Sophie is loving all the additional food. It's not much but she will take what she can get. Lately, she has been more aware of what we have been eating. We use to be able to eat anything around her and she wouldn't even care. Now, if something goes in our mouths, she wants to know what it is.

Her seizures are about the same. She has had a few clusters that are worse than normal. Last night, she woke up around 4am with a cluster that made her upset. But with anything else, any kind of adjustment to her system, and her seizures can get worse...like when she is sick or when she had ear infections. The increase in seizures are temporary and as her body adjusts, the seizures go back down. So this is what we are hoping for...that within the next week, her seizures will stabilize and we will continue the wean. Please, please, please, let that be because I do not know how much more of this diet I can take!!!

2:1

Well, we did it. We went down to 2:1 ratio on the diet (from 3:1) today. She has done well so far. Actually, she has been in a great mood today. She went down the stairs all by herself. Usually, she will slide down a couple of steps on her butt and then stand up and lean forward so that I will grab her. But she just kept sliding down on her butt. Actually, she did it twice today. Tonight, after dinner, she played so well. She was just so happy and walking around all over the place. Brandon is giving her a bath right now. She loves bath time. We asked her if she was ready for her bath and we kept saying "let's take a bath" and she walked all the way into the bathroom by herself with Brandon and I following behind her. She definitely knows what "bath" means. She is just doing so well developmentally. She had a great day at preschool yesterday. Her therapist said she was in a great mood and that she was being vocal. It is just so wonderful to see her doing so well especially with the way she was acting on Keppra. I am so glad we came off Keppra as quickly as we did. So within the next 2 or 3 weeks, Sophie will be off the diet. Her only medication will be 5mg of Clobazam (2.5mg in AM and 2.5mg in PM). I wish we would have been able to completely wean Clobazam and have her medication free for awhile. Being on such a low dose of medication has done wonders for her development. I cannot say this enough...I am so proud of my little girl. She is what keeps me going in this fight. Whenever I start feeling down, I look at her and see how strong she is fighting. It makes me realize that I am just helping her get through this but that this is actually happening to her. If she can stay strong and happy, then why wouldn't I. I have learned and I am still learning so much from her. I just love her so much.

Weaning Keppra...

Sophie has not tolerated Keppra very well. It has made her very lethargic and clingy. This morning, we decided not to give Sophie her morning dose and it has already made a big difference. Her therapist at her preschool said Sophie was so much more attentive and alert compared to Wednesday. Keppra did absolutely nothing for her seizures so it was an easy decision. If anything, it made them slightly worse since she was so drowsy throughout the day. I e-mailed her neuro at Johns Hopkins today to see what he has to say about the wean. Also, I told him that I wanted to wean the diet. Hopefully, he agrees.

After a bad day...

Sophie did not do so well at preschool today. She was tired and clingy. She has been that way off and on since we started Keppra. I do not think she is handling this medication too well. We will give it the weekend and then talk to the doctors on Monday if things are not better. With all that said, Sophie stood up all by herself today!!! She usually needs some kind of prop to help her up. Tonight, she was sitting in the middle of the floor and just pushed herself up!!! Through of all of this, she just keeps going. I am continuously amazed at her determination and will. She gives me so much hope.

Big Girls Don't Cry...

No more tears for Sophie when it comes to preschool. Brandon dropped her off last Wednesday (only her 3rd day of preschool) and she did not cry. She reached backed for him once but willingly went to Barb, her developmental therapist. Then I dropped her off on Friday. Again, no tears. She reluctantly went to Kate, her physical therapist but Barb was in the room reading a book to the kids and she seemed happy when I left. So that is it. She officially likes preschool. Now I only wish they offered the program more than 2 days a week. I think she has already benefited greatly from the 4 days she has been there. I am so excited to see how Sophie will progress in the months to come.

Yet Another Medication Increase...

We increased Keppra on Saturday morning. Sophie now gets 125mg in the AM and 125mg in the PM. She was so completely out of it on Saturday. Luckily, it was just a fluke because she seemed to be in a better mood today.

My Little Daredevil...

Sophie is on the move. When she is motivated to do something, she will do it. As always, Sophie only does things on her terms. Her therapists have also come to realize this. There are many things that we realize that Sophie can do but she refuses to do them. When the moment is right, she will do it. Earlier today, Sophie and I were hanging out on the first floor when I walked into another room to grab something. When I was walking back through the kitchen, I heard the sound of the upstairs gate opening. My heart skipped a beat but I told myself to remain calm. Sophie refuses to climb the stairs. She will climb up four or five steps but refuses to climb any further. So as I turned the corner, there she was on the top step pushing the gate open. Luckily, the gate was not locked and she did not try to pull herself to a stand. I quietly went up the stairs as I did not want to startle her. I held the gate open as she crawled through the rest of the way as if she has done this a million times.

Sophie loves bath time. When she sees that water running in the bath, she knows exactly what is going to happen. A couple nights ago, as Brandon was filling up the tub, Sophie tried to climb in by herself. We were standing right next to her, but we let her keep trying to see how far she could get. She propped her left leg on the ledge and then pulled with all her might to get the rest of her body over. Well, I guess she was very motivated because she would have tumbled head first into the bathtub if Brandon did not catch her.

It is so great to see her motivated and able to figure things out on her own. I would love to see what her EEG would look like now.

A New Medication...

This past Friday evening, we started Sophie on Keppra. She takes 125mg in the evening. It is still too early to tell if it is working, though I think it is a little bit. There are so many factors that cause Sophie's seizures to increase or decrease. Right now, she is cutting a few more teeth. That usually causes an increase in seizures. So right now her seizures are a bit stronger than usual. But today it seemed that she had a slight decrease in seizures. Only time will tell. It is so hard to be optimistic after failing so many different seizure medications. But I cannot help but get my hopes up a bit. The ketogenic diet is not working. I CANNOT wait to wean the diet. I hate it. I hate it. I hate it. I hate everything about it. But that is only because it did not work for Sophie. It is just so hard to keep her on the diet and deprive her of being able to eat lots of fruits and vegetables that she loves. So hopefully, once we stabilize her on Keppra, we will be able to wean the diet.

Update on Sleeping Habits...

Sophie is no longer sleeping through the night. She slept through the night for 3 nights in a row. Just enough to make me believe that this was going to be it. She has only slept through the night one more time since then. It is really not that bad. We have gotten use to it. Once the new baby is here, that will probably be a whole different story.

Natural...

That is all natural hair in Sophie's first day of school pictures. I did not even notice it when I posted the pictures but several people asked...what is in her hair? is that a hairpiece? did you highlight her hair? It must just be the way the sunlight from the window is shining on it.

Sophie's First Day of Preschool...

Yesterday was Sophie's first day of preschool. She will be going every Wednesday and Friday mornings. I was really quite unsure how she was going to react. There was no way for me to explain to her what was about to happen...which was that I was going to drop her off with some complete strangers in a new building but that I would be back and that she would be okay. Sophie has only been left with family and very limited family at that. So the morning started off well. I woke her up, fed her breakfast, got her dressed, and we were off to preschool at 8:40am. Usually, Sophie does not wake up until 8:30am but she really did not mind waking up a little early. She seemed to be in a good mood. We arrived at her preschool and the clinging began. She would not let go of me. I set her down and she stood there holding my leg. Then she fell backwards and the crying started. I picked her up and she calmed down a bit. Then I handed her off to one of her therapist* and the crying really started. I stood there outside her classroom for about 10 minutes watching her cry through the one-way mirror. She climbed off the therapist's lap and made a run for the door (okay it was more like a wobbly walk). Then it was time for the special needs kids to go to the classroom with the typically developing kids. It was my cue to leave because if she dare saw me...

I arrived back at Sophie's preschool at 11:40am. She was still eating her lunch so another therapist introduced me to the typically developing kids and their teachers. By that time, Sophie was done eating lunch and the therapist was walking Sophie down the hall towards me. I yelled out Sophie's name and she looked around and saw me. As soon as the therapist let go of her hand, she walked quickly towards me with a big smile on her face. I gave her a big hug and then she wanted back down. She was checking the things out around us as the therapists were explaining her day to me. She did GREAT!!! They described Sophie "to a T". They said when she first went into the classroom with the other kids, she just kind of observed what others were doing. She was attentive during story time. She enjoyed music time. As the day went on, she warmed up a bit. She even walked up to a little boy and tried "talking" to him. So as it was time to leave, she did not want me to hold her. She was being Miss Independent!!! She held my finger as we walked all the way to the car. She is going to do so great in preschool. I am so excited. She was in a great mood the rest of the day.

* Sophie will have four therapist at her preschool. She will be getting 30 minutes of speech therapy and occupational therapy every day. She will be getting 30 minutes of developmental and physical therapy every other day.

Here are some pictures...