Wednesday, November 28, 2007

Emotional roller coaster...

A day with Sophie is so emotionally exhausting. One minute, I am so proud of her. The next minute, I am in tears because she just had a seizure. Yesterday morning, she had a heartbreaking seizure. She was in the sunroom playing so well. Then her arms stiffen straight out from her side and she hits her head on the floor. The thing that was so heartbreaking about this seizure was that she was stuck in this position. It lasted about 3 seconds. It is amazing how long 3 seconds can feel at times like these. I immediately picked her up off the floor and held her but to see her stuck in that position with her head face down on the ground... I am use to the seizures that are quick. Well, as long as they are not too strong to where she slams her head into something. But the one that she holds from anywhere from 3 to 10 seconds are hard to watch. They are especially hard on Sophie. She is confused after she has a longer seizure. When she has a quick drop seizure, she can continue playing as if nothing has happened. Actually, these new seizures last longer than 3 to 10 seconds. To the eye, it seems like only a matter of seconds, but it shows up on the EEG as long as 30 seconds. We have increased the Depakote to 500mg a day (125mg in AM, 125mg at noon, 250mg in PM). She has to get blood drawn on Friday to check her Depakote level. Hopefully, it won't be too exhausting for her because she has preschool after that. She loves preschool!!! LOVES, LOVES, LOVES preschool. I am so thankful for preschool.

On a roll...

Sophie is on a roll. So many new things!!! Sophie is a pointing addict. It is incredible because this is the most she has been able to communicate but it is EXHAUSTING...especially being 8 months pregnant. She points all day long - the light switch, the picture on the wall, the buttons on the refrigerator... In other words, anything that is above her reach. She will take my hand, lead me to whatever she wants to bang on, then turn around so I can pick her up, and then bang on whatever it is. And whenever I do not play along, she gets mad. Talk about throwing some fits. She knows what she wants and she wants it now. And that sad face she can make in an instance. She can go from being incredibly happy to tears rolling down her face to being incredibly happy again - all within a matter of seconds. She knows how to work mommy over.

She also went from refusing to put anything in a container for me (she would occasionally do it for others) to putting shapes into a shape sorter. She can only do round and square objects but she is doing it on a consistent basis. If I hand her a ball, she knows exactly where it goes. She is also stacking rings on a ring stacker.

Sophie loves music. She loves bouncing to music and her new thing is clicking her tongue to music. The first time she did it was about a week ago at 1:30am. Sophie would not sleep so I got her out of bed to let her play. As I laid there half delirious, she started clicking her tongue to the ABC song playing on one of her toys. If she didn't do it again the next day, I probably would have thought I was hallucinating. Now she clicks her tongue to all kinds of music. It is her way of singing. Also, while Sophie is standing, she will hold on to my hands and I will rock her back and forth while singing Row-Row-Row-Your Boat. Today, she came up to me and held on to my hands and started leaning back.

So those are her newest things, at least, all I can think of at the moment.

Monday, November 19, 2007

Not again...

I am almost too embarrassed to post this. Sophie had yet another ER visit today. Yes - that makes 3 ER visits in the last 5 weeks. First, I just want to say she is FINE!!! Which is quite surprising considering the circumstances. Brandon told Sophie that it is a miracle that she is okay but that we would like to save the miracles for her to become seizure free and not for these other unknown events that seem to happen to her.

So what happened... Sophie and her two cousins, Colin and Nicholas, were playing in the sunroom while I was making some lunch. I heard Colin say he wanted to go downstairs to get a soccer ball but I just did not think twice about it. The next thing I heard was...boom, boom, boom, boom and screaming. At that moment, I knew exactly what happened. Sophie went tumbling down our basement steps head first and landed on the concrete floor. I ran to the basement door and I saw Sophie laying face down at the bottom of the steps. I was so scared. I did not know what to expect. I ran* down the steps and I did not know what to do. I was scared to pick her up for fear of hurting her worse. I scooped her up and looked at her face. No blood!!! All I saw was an increasingly huge knot on her forehead. I ran upstairs with her in my arms and immediately called Brandon. He immediately left work to meet me at the ER. I then called my sister to have her pick us up. Only a few minutes had passed by at this point and Sophie had stopped crying. She seemed fine. I looked under her clothes and no signs of bruises or cuts. The only thing I could see was this growing knot on her forehead and a few other small sore spots on her face. Colin, on the other hand, was crying inconsolably. He had witnessed the entire thing and was so scared that he may have hurt his little cousin. Colin is more like a big brother to Sophie than a cousin. He is always so patient with her and is always doing such kind things for her. Sophie wanted to get down and play but I was scared out of my mind to let her walk around for the fear of her having a drop seizure and landing right on that huge knot on her forehead.

My sister, Erin, arrived and dropped Sophie and I off at the ER. Brandon was already at the ER waiting for us and Grandma Debbie arrived shortly thereafter. Sophie was all smiles and seemed to not have realized what just happened. Once we were admitted into the ER, they took an x-ray of her neck and spine and all looked great. No broken bones, no cuts, no bloody lips, no bruises anywhere else on her body. She is so tough!!! She literally walked away from somersaulting down 14 unfinished wood steps and landing on a concrete floor with only a huge knot on her forehead a couple of other small sore spots on her face. She has been fine the rest of the night.

By the way, we had the same ER doctor as our last visit. When he walked up to us, he said we looked very familiar. I explained we were just here recently for croup. When we were leaving, he said he would call if the radiologist saw something on the x-ray that he did not see but that no news was good news. I said no offense but I hope to never see or hear from you again.

* Colin later said to me...I can't believe you didn't fall down the steps too. You came down so fast. He later asked his mom if she would run that fast to get to him if he got hurt. So precious!

Monday, November 12, 2007

Thank you, Grandma Debbie...

Last week, Brandon was out of town from Tuesday through Friday. Thankfully, Grandma Debbie stayed with us. As pregnant as I am, Sophie can be so exhausting. And as big as I am getting, it is not very easy to lean over a tub to give Sophie a bath. So I am very thankful that Debbie was able to step in and take care of Sophie during the nights that Brandon was gone. She knows Sophie so well and knows Sophie's routine so well, that she is able to just take over without me having to explain one thing. I just do not know where she gets all her energy from especially with everything she has been through lately!!! I am just so lucky to have such a wonderful mother-in-law. It is so hard for me to express my gratitude because words do not give it justice.


Sophie loves preschool. She is learning so much there. Sometimes, it is hard for me to believe the things her therapists are telling me that she is doing. She started preschool a little over 2 months ago and she has adjusted well, even though she still "cries" when we drop her off. At first, it was real tears. Now she just reaches back and cries out for us, but as soon as we leave the room, she is just fine. Actually, this past Friday, she jumped out of my arms to get to Barb (her developmental therapist). Unfortunately, I had to explain to Barb that I had to pick Sophie back up in 45 minutes to take her to her neuro appointment which gave Sophie enough time to decide that she wanted mommy back.

When I pick Sophie up, it is a whole different story. At first, when I would pick her up, she would give me this really sad look as to say "you better never leave me like that again". Now, she barely gives me a hug and she wants down to walk around while her therapists are explaining how she did that day. When we leave, she will hold on to my hand and walk all the way to the car. But, I can never get her to walk into preschool. Someday...

As for the things she is doing while at preschool...
  • She is consistently putting puzzle pieces into a container. I can rarely get her to put anything in a container. But, at preschool, she does it on a consistent basis while taking turns with another girl in her class.
  • She gets very excited when it is time to play ring-a-round-the rosie.
  • She loves bouncing on a trampoline and becomes very vocal while doing this.
  • She is starting to understand and follow the routine of preschool (i.e. storytime, lining up at the door, etc.).
  • She loves playing the tom-tom drums.
  • She actually took back a toy another child stole from her. Sophie was playing with a toy telephone and another girl took it away from her and Sophie took it back.
The list could go on but this is what popped out of my head for now.

Saturday, November 10, 2007

Another round of Depakote...

Sophie had a neuro appointment this past Friday. We decided to start her on Depakote. For the past week, Sophie has been having a different type of seizure. Also, the number of seizures have been slowly creeping back up. It is so sad to watch. Her seizures have also been stronger causing her to fall down. She has numerous new bruises to prove it. I cannot count the number of times she has banged her forehead on the table while eating or on a toying while playing this past week. Just today, she got a big knot on the top of her forehead when a drop seizure caused her to hit her forehead on the wooden part of the staircase. That poor forehead of hers!!! Her new seizures last about 3 seconds long, as opposed to the quick one second head drop seizure, and are classified as tonic seizures. We started her on 125mg of Depakote this morning. This is the second time she has tried Depakote. Unfortunately, it did nothing for her seizures last time but after trying 8 different medications and the ketogenic diet, your options become limited.

Wednesday, November 07, 2007

Sophie's new things...

Sophie's development continues to surprise me. I cannot believe all the new things she does.
  • Bounces. She will be standing there and start bouncing up and down and nods her head along. Sometimes she will do it when music is on like she is dancing. It's adorable. She has been using a mini-trampoline with a bar you can hold to at preschool so I wonder if this is where she has learned it from. By the way Sophie loves preschool. I LOVE preschool...she is learning so much there.
  • Vocal. Sophie has been much more vocal lately. She loves to walk around saying dadadada. By the way, daddy has been her all time favorite lately.
  • Attention span. Sophie's attention span is at an all time high. She loves books. She loves turning the pages in books. She loves looking at the pictures. Today at preschool, her therapist said she paid attention the entire time she read a book to her.
  • No. Sophie has just started shaking her head no. Not that she only does it when she means no but just whenever she feels like it.
  • Understanding. Sophie is understanding more and more of what people are saying to her. She knows what "outside" and "book" means among other words. It is wonderful to see her respond to something you say to her or to see her get excited when say a word.
So this is the latest list. I love being able to post such positive news.

Thursday, November 01, 2007

What a week...

With seizure improvement, comes more development and personality. And what a personality Sophie has!!! Talk about coming into your terrible twos except it really isn't terrible. It is amazing to watch her communicate her wants. I have so many examples from this past week...
  • Like when I opened the door to the garage to throw out some recycling. She was, of course, right on my heels because she cannot stand to be more than an inch away from me. I threw the recycling in the bin which doesn't even require me to step into the garage. I try to take a step back to shut the door but Sophie stood her ground. So I turn around to pick her up and she collapses to the floor before I even get my hands under her arms. This is so unlike Sophie because when DOESN'T she like to be picked up!!! So as she collapses, she lets out a scream. She wins. I hold her hand as she climbs down the 2 steps into the garage and she starts wandering about the garage checking everything out. She can't "tell" me in words that she wants to play in the garage but her body language sure speaks loudly.
  • Or like when she throws her food on the ground during mealtime. I will have to get the camcorder out for this one. Anything she does not want to eat ends up on the floor but there is nothing casual about it. She picks up a piece of food she doesn't want, throws it on the ground and then cracks up laughing. Not just a little laugh. But a throw your head back belly laugh. Of course, she is absolutely adorable when she does this so I just try not to let her see me laughing along with her. Though, I think soon enough, I will no longer be laughing with her.
  • Oh, this one is sweet... During a meal, Sophie will first eat her most favorite item and then move along to the next or she will start throwing whatever is left. If I give her more of her favorite item, she will turn to me, touch my arm and smile at me as to say "thank you mommy that is exactly what I wanted". It is so incredibly sweet.
  • Grandma Debbie has been working with Sophie in identifying body parts especially the eyes. Well, the other day, Sophie pointed to the eyes four times. Of course, this brought tears to Grandma Debbie's eyes. I wasn't around to witness and Sophie refused to show me. Actually, Sophie usually refuses to share her new discovery with more than one person at a time. Well, later that night when it was just Sophie and I, I asked her where my eyes were and she pointed to them. Way to go Sophie. Thank you Grandma Debbie for your persistence in teaching her something new. And persistence you must be because Sophie makes you work hard if she is going to show you something new.
Well, the list could go on. I really need to start posting more often because Sophie is just on the go. She is still doing really well with her seizures, though, she had a few more today than the last few days but she did eat some Halloween candy last night.