Woohoo!!!

Sophie slept in her own bed last night ALL NIGHT LONG!!! I cannot remember the last time she did that. Usually (or should I say always), she ends up in our bed around 3am if not earlier. Today, she slept in until 8:30am. Luckily, she did not have therapy until 9:30am so I did not have to wake her up. It was a very busy day today. Sophie had speech therapy at 9:30am, developmental therapy at 11:30am, and occupational therapy at 12:30pm. By 1:45pm, she was in her crib sleeping. Unfortunately, that nap did not last too long. She woke up crying twice and by 2:45pm she refused to go back to sleep. Surprisingly, she was not crabby at all. She had her afternoon snack, went to the grocery store with me and then we all went over to a friend's house for dinner. I guess that good night sleep was enough for her. If this is her new schedule, I have a lot of adjustments to make to mine. One hour is not enough time for me to eat lunch, shower, clean the kitchen and just have a bit of down time. But I will take her sleeping through the night anyday. That means no waking up in the middle of the night having seizures. Those are the worst. Oh by the way, we had to go back up to 5mg of Clobazam (2.5mg in AM and 2.5mg in PM). Her seizures would not stabilize on the 2.5mg of Clobazam a day. So next week we will most likely start Keppra.

Sophie is a big sister...

Yes, I am pregnant. We found out today that it is a girl!!! So far, the pregnancy is going well and all the test have come back normal. We are working hard to get Sophie to walk more. Brandon was actually just outside with Sophie and she was walking by herself. Usually, the second she walks outside, she wants to be held. I guess she is becoming more confident with her walking. When we are inside the house, she will walk towards me if I am doing something in another room. But if we are in the same room together and I start walking towards another room, she gets very upset and wants to be picked up. Well, I figured out yesterday that if you hold her hand she will walk with you. I guess she just thought she was going to get left behind. So that is her new thing - handheld walking. Anything beats carrying her. She is getting so big. Not to mention, I am starting to get big. So now it's time to think about names for our new baby girl...any suggestions???

Way to go, Sophie...

Sophie's development is at an all time high. Most likely due to only being on 2.5mg of Clobazam. This is the least amount of antiepileptic drugs she has been on since this all started. Everyday she seems to amaze me. She does things that may seems so minor to most 22 month olds but for Sophie they are huge progress. We are all so proud of her.

When she sees something that she wants, she will walk across the room, stare at it, then scream. Not a bad scream, more like "ahhh" really loud.

She will also point at things that she wants. Occasionally, when I line up her food for a meal, she will point at what she wants to eat first. For lunch, she will always point to her chicken salad first.

She uses her pointer finger to manipulate toys...like push buttons, flip switches, etc. She knows what buttons to push on her toys to turn them on.

She is starting to gently put her sippy cup down instead of throwing it down like it's on fire. Hopefully, this is the start to the end of her compulsive throwing.

She is getting much stronger at walking. Also, she is getting much stronger on the ability to stand up without assistance. We all know that she is able to stand up on her own but she refuses to do it. She will use something as low to the ground as her boppy pillow to stand up.

She says no and knows what no means. It is not like I tell her no very often but she learned that word quick. She cries when I tell her no. And if I try to make her do something that she doesn't want to do, then she will say "na na na na na". And if she is really mad, then she will say "NO".

She is a climber. She tries to climb on anything. She tries to stand on my legs when I am sitting down. She tries to stand on any toy on the ground. She climbs up on the chair and then to the couch. She climbs up on the ottoman. She can almost climb up on the couch. Anything that she can get a step up on, she wants to step on it.

She is more vocal. She is making more sounds. Sometimes I think she knows what mama, dada and sissy means. Though she will not use mama and dada consistently.

She uses both hands to pull things apart. She loves to pull tissues out of the box and rip them up into little itty bitty pieces.

All in all, she is more explorative, more aware, and more demanding. Sometimes it is exhausting but I love it. It is so hard not to spoil her. She is just too darn cute. I know, I know, she is my daughter. But really, she is just too darn cute. The way she will walk up to a complete stranger and smile at them. That precious, heart warming, smile. How can that not brighten up anybody's day. How can I not spoil her with that smile. It makes me smile just thinking about it.

Another med decrease...

We have been slowly decreasing Clobazam since we returned from Johns Hopkins. It wasn't the neuro's initial suggestion but he agreed to let us try and see what happens. Since Sophie is not seizure free then "playing around" with medication levels is not as crucial as if she was seizure free. Initially, she was on 10mg per day (5mg in AM and 5mg in PM). We started the wean by taking away 2.5mg in the AM. At first she did not handle it too well but then she stabilized. Then we weaned 2.5mg in the PM which she handled very well. Last night, we weaned the other 2.5mg in the PM. So now she is only on 2.5mg in the AM. This also means that she is not on any antiepileptic drug in the evening. Wow- that is so nice. Hopefully, the rest of the wean will go well and we can keep her off any antiepileptic drugs for a couple of weeks. I would just love to see what this will do to her development. Eventually, we will give Keppra a try.

Florida Vacation

We had a wonderful vacation in Destin, Florida. It was relaxing. The weather was nice. The ocean and white sand beach were beautiful. Brandon got to play golf twice, tennis once and watch some Cardinal baseball games. Haley and Sophie got to go swimming everyday (even as late as 9pm and as early at 8:30am). Brandon and I drove by the spot where we got married at exactly 5 years ago on July 28th. What great memories!!!

Here is a video of our vacation. As you can see, Sophie had a wonderful time swimming in the pool. She has learned so much since that vacation that I will have to post about later. Thank you Grandma Debbie for a wonderful vacation and a much needed break from our daily routines.

IFSP...

IFSP stands for Individualized Family Service Plan. It is part of the Missouri First Steps program (Early Intervention) in which Sophie receives her therapy. The IFSP is held every 6 months in which Sophie's service coordinator, therapists and I all meet to come up with goals for the next 6 months and also to discuss how much therapy Sophie will need.

The previous IFSP was held on January 22, 2007. One of our concerns at that meeting is as follows:

"Family is concerned about Sophie's motivation to crawl across a room. For example, she is crawling about 10 feet, but does not want to crawl from one room to another to get mom or dad or to something she wants..."

Can you believe that?!?! That was just 6 months ago!!! Now Sophie is walking all over the place. We are continually amazed at how fast she can walk from one room to the other. She is so quick. She will even leave the room we are in to go explore another room. She is becoming less dependent on us. I am so proud of my baby girl. Sometimes I forget how far Sophie has come.

Sophie was also approved for weekly physical, developmental, occupational and speech therapy. We should receive the new IFSP sometime next week. Sophie will also start preschool in September and will start receiving some of her therapy at preschool. She will be going 2 mornings a week from 9am to noon. I am anxious to see how she handles that transition.

Update...

The last 3 weeks have been absolutely crazy. It all started on a Monday morning with Brandon, Sophie and I coming down with a stomach virus at 6am in the morning. Luckily, Grandma Debbie did not catch the virus and was able to come over and help with Sophie. The virus put us out of commission for a good week. Then the following Monday, Grandma Debbie, Sophie and I left for Baltimore for Sophie's 3 month follow up visit at Johns Hopkins. Then on Friday we left for Florida and just got back this past Saturday. On Monday, Sophie had physical therapy and her 6 month IFSP meeting. On Tuesday, Sophie had gym class and a dermatology appointment. Wednesday was a fun day and we went and saw Charlotte's Web at the movie theatre with Haley, Aunt Erin, Colin and Nicholas. This brings us to today where I am finally sitting down to update the blog.

Back to Johns Hopkins... The trip went well. Sophie was great, as always. The appointment was somewhat depressing, as always. I hate taking Sophie to her neurology appointments. I always end up asking the questions that never have positive answers. The doctor convinced us to continue with the diet for another 3 months. Why not? What other options do we have at this point? Sophie has already tried and failed 7 different seizure medications. It is all a waiting game now. All I can do is hope and pray that Sophie's seizures will miraculously stop. I say miraculously because none of her neurologist seem to think they will completely go away. They all think that this is something she will have to deal with for the rest of her life. Very depressing!!! I can deal with her developmental delays. I cannot deal with her seizures. It is a daily battle for Sophie and it is heartbreaking to watch. We are trying to wean Clobazam. She was on 10mg a day and we are trying to wean 2.5mg every two weeks. Once we wean the Clobazam, then we are going to add Keppra.

I will post all about Florida in another post. I have a lot of pictures and video to download. Though to sum it up...it was a much needed break from our daily routine and we had an absolute blast.

I will also post later about the IFSP as I have some good news to share.