Wednesday, December 19, 2007

16 days and counting...

Not much else to say except that she had a great day at school today.

Sunday, December 16, 2007

12 days and counting...

It has been 12 days with NO SEIZURES!!! YEAH!!! It has been wonderful!!! We have an appointment with her neuro next Thursday so we will see what he has to say about all of this. I would love to see what her EEG pattern looks like now. She has been doing so many new things lately...

  • She is clapping her hands. She claps her hands for all kinds of reasons. She claps when she just did something she is proud of (very adorable especially when you see the big smile on her face). She claps when you sing to her or she hears music. She sometimes even claps for no apparent reason (or least any reason that I can think of but who knows what goes through her mind).
  • She is following one step commands. She knows what her choo-choo train is and will turn it on when I ask her to (if she is in the mood) without me pointing or looking at it. She points to the kitchen sink when Daddy says it is time to brush your teeth. She points to the light switch when you ask her if she wants to turn it on (which she could do for hours). She walks to the kitchen counter when you ask her if she wants to eat (if she in hungry).
  • Her walking and balance is so much better.
  • She is much more alert and does not fatigue as easily.
Her therapist were all very proud of her this past week. They were impressed with all the new things she was doing and just her behavior in general. Sophie is just more alive...just more with it. It is hard to explain in can just see it in her eyes...she is just much more a part of this world.

Tuesday, December 11, 2007

Just have to share!!!

I can't hold it in anymore. It's been 8 days since Sophie has had a seizure. Her first jackknife seizure was on May 7, 2006 (a little over 19 months ago though looking back she was having subtle headdrops for about a month before that). She has had daily seizures ever since then until Monday, December 3rd around 2pm. I am so excited but so scared to get my hopes up too high. She has been very sick for the past 2 weeks but started feeling better yesterday and has been eating and doing very well today. I guess this next week will be the true test if she remains seizure free. Her neuro thinks maybe it was because she was ketotic but her seizures were horrible when she was on the highest ratio during the ketogenic diet. She started a second round of Depakote on November 10, 2007. I am not going to try too hard to figure out why. I am just trying to enjoy these days especially with her feeling so much better these last 2 days!!! I feel like I am just going to burst with joy!!!

Monday, December 10, 2007

Pure chaos...

The last 2 weeks have been absolutely crazy!!! Sophie ended up in the ER, yet again!!! Going back 11 days ago (Thursday, Nov 29th), Sophie started acting strangely. On that Thursday, she did not eat much lunch and she refused to eat any dinner. She was acting very disoriented. She kept pointing at nothing and kept crying. I have never seen her act this way before. I cannot even explain in words how odd her behavior was that night. We had just increased her Depakote and I was worried that she was having some serious side effects from the Depakote. One being acute liver failure which the symptoms are described as mental confusion and vomiting. Then the following morning at 6:15am, she vomited bile. I talked with her neuro and pediatrician and they advised us to take her to the ER to run some test. She had her blood drawn to check her levels and everything came back fine. We were told that she probably just had a stomach virus. The neuro had us decrease the Depakote back down to 125mg 3x/day. Of course, with there being so much in the mix, it is always a guessing game to try to figure out what is wrong. So over the next couple of days, she was very lethargic and ate very little. Then on Saturday, she started running a fever that lasted until Tuesday. On Tuesday, she started to eat a little bit more and I thought she was starting to feel better. Then on Thursday, she started vomiting again. So on Friday morning, I had her Depakote level checked again and it was fine (her level was at 61 - anything over 100 is considered high). When we got back from having her blood drawn, she threw up again so I made an appointment to see her pediatrician that afternoon. The pediatrician checked all her vitals and everything seemed fine but she prescribed Axid to help calm her stomach and Zofran to stop her from vomiting. Well, she vomited some more on Friday and Saturday. On Saturday, she refused to eat or drink anything at all. Then Saturday evening, after her Zofran dose, she started drinking again. On Sunday, she ate a little. Finally, that brings us to today...she had a relatively decent day of eating and was in a fairly decent mood!!! Hopefully, we have seen the last of whatever she has been going through. My poor girl - this must have been so difficult on her not being able to tell us how she felt or what she wanted!!!

I had to leave this past Friday afternoon to go out of town for the thank you Uncle Jason for watching Sophie on Friday and thank you Grandma Debbie for helping Brandon out on Saturday and Sunday. I am sure Brandon is especially grateful for you taking on nighttime duty on Friday and Saturday evening.

It is late and I should be in bed so I will post again soon about her new developments...there are some exciting things happening through all this chaos!!!

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.

Wednesday, October 31, 2007

Happy Halloween...

Sophie had an absolute blast today. She started her day off with waking up Haley (not so much fun for Haley), but Sophie always lights up when Haley is around. Then she had a great day at preschool and got to wear her Halloween costume. Her therapists said she was very interactive and was able to pay attention for a little bit during storytime before she got too restless. She made a lot of eye contact and just seemed to be in a very happy mood. She fell asleep on the way home from preschool and took a great nap. She woke up in a great mood and played outside for awhile before dinner. Then we went trick-or-treating for a little bit. It was a relatively nice night and she enjoyed playing on the front porch and checking out all the trick-or-treaters. She just loved hanging out and seeing all the different kids come by in their costumes. She is so relaxed at home. Home is so much of a comfort zone for her that she can really open up and explore. It is so hard to explain in words the mood she was in. It was just incredible. I wish everyday could be this fun as I am sure Sophie wishes too.

Tuesday, October 30, 2007


Sophie seizures have been getting better meaning we see less and less each day!!! But why??? It seems the more carbs we give her, the less seizures she has. Is this why we are seeing less seizures??? Or is it that she is just outgrowing them??? Or is it because she is sick??? In some kids, being sick reduces seizures or it can increase seizures or it can not make a difference. So many variables. I really don't care why as long as she stays on this pattern!!! I am scared to be hopeful. Sophie has been battling daily seizures for over 18 months now. How I long for just one day that she does not have any seizures. JUST ONE DAY. JUST ONE DAY WHERE I CAN SAY...NO SEIZURES TODAY. One day at a time, right? Then I can hope for 2 days, then 3 days...

Wednesday, October 24, 2007

Yet another ER visit (not to be confused with my last post)...

Sophie woke up around 10pm Monday evening with difficulty breathing. She was trying to cry but couldn't because she could not catch her breath. She had been a little congested the last couple of days so we tried steaming up a bathroom to help clear her airways. This did not work so we took her outside to breathe in some cool air. This helped a little but she was still having difficulty breathing. So we called the pediatrician's exchange number. A nurse called us backed and listened to Sophie's breathing over the phone and told us to immediately take her to the ER. This time we decided to take her to a different ER than the last 2 times.

Sophie was immediately admitted into the ER and was diagnosed with croup. We had a feeling that this was what it was but since she did not have the distinct barking cough we were unsure. The doctor said Sophie was in stridor and was given a dose of steroids and a breathing treatment. Wow - what a difference this made. Her breathing immediately sounded better and she was no longer in stridor. After the treatment, we had to wait 90 minutes to make sure she did not relapse. So we turned off the lights, laid in bed and took a little nap. Around 2am, Sophie was released.

She still is not feeling well and now has a constant runny nose. If she even sees me with the suction bulb in my hand, she starts crying. I never realized how strong or limber she was until I had to hold her down myself while suctioning her nose. I have to use every limb on my body to achieve this. She can twist and turn her body in such a way that it makes it almost impossible to do this myself. It's either that or wipe her nose every 5 minutes. If I don't catch it in time, then she rubs it all over her face...yuck!!! She also cries when she has a deep cough which doesn't help her runny nose at all.

Oh, and our ER experience was so much better. Everyone was very nice and competent.

Saturday, October 20, 2007

Another ER visit...

Last Tuesday, Sophie fell out of bed, hit her head and cut her face right above her right eye. It bled pretty bad and it looked like it probably needed stitches. Of course, as soon as I picked her up she was fine but I was crying hysterically. Oh, the guilt!!! Grandma Debbie immediately came to the rescue and drove to the ER with us. Daddy pulled up right behind us. Luckily, she did not need stitches but they were able to use liquid skin adhesive to close the wound. What an ER experience!!! I am glad I waited a few days to post this...

It all started with the nurse coming in with a gauze pad full of numbing gel to put on her cut. So we laid Sophie down on the bed and held her arms down. I thought maybe the nurse was going to use a q-tip or something to spread the gel on Sophie. No - she just stuck the entire pad on Sophie and the gel starting running down her face and into her eye. Then about 15 minutes later, a med student came in to take a look at the cut to see if it needed stitches. She took the gauze pad off and wiped the gel off to take a look. She said that it did not need stitches and just needed steri strips. I asked about liquid skin adhesive since it is easier to maintain and at first she did not know what I was talking about and then said that she did not know if they used that here. So then about 15 minutes later, the doctor came in with the med student and asked her how long the numbing gel has been off. She looked at Brandon dumbfounded and so Brandon said about 10 to 15 minutes. The doctor said the numbing gel probably wore off by now so that he would need to put more on. They both left the room and came back a few minutes later. The doctor whips out a needle to numb the area. He sticks Sophie 4 times around her cut while she is screaming hysterically and also accidentally pokes her with the needle about an inch about her cut. Then we lay her down so the doctor can use the liquid skin adhesive to close the wound. I am holding her head still. Brandon is holding her arms down. Grandma Debbie is holding her legs down. In other words, she is not moving. The doctor proceeds to put the adhesive on Sophie and proceeds to almost glue her eye shut along with his glove along with a crease about an inch about her cut. So he gets everything unstuck and we are good to go. Hindsight, what was the reason for sticking her with a needle 4 times (5 if you count the accidental poke) if you are just going to use adhesive to close the wound. Getting stuck with a needle has to be 100 times more painful than holding the wound close to put adhesive on it. Oh well. It is over now and hopefully there will never be a next time which I will now be prepared for.

Friday, October 12, 2007

Thursday, October 11, 2007

Happy 2nd Birthday!!!

Wow - I can't believe Sophie is 2 years old today!!! The first year of her life seemed to have last forever but this past year has just flown by. She has accomplished so much this past year. It seems each day she learns something new. I love this age...for the most part. It is so exciting watching her grow and figure new things out. Her personality is really emerging and her facial expressions are so adorable. On the other hand, she has become so demanding. So very demanding. It is great to see her know what she wants but that can be so exhausting. It is hard to draw boundaries with her but I am sure with a new baby on the way that it will just naturally happen. I love her so much. It didn't happen overnight with me. I remember when she was first born and I loved her and adored her but not like now. She fills my heart with so much joy.

Sophie is so blessed to have so many people love her. Thank you all for the birthday wishes. We have enjoyed opening the cards and reading them to her. It means so much to us to know so many people care about her.

Happy 2nd birthday my toddler girl!!!

Wednesday, October 10, 2007

She finally did it...

She finally decided to put some blocks in a be exact - 12 blocks in all. She did this during developmental therapy but I have yet to get her to do it again. STUBBORN!!! Hmmm...I wonder who she gets that from!

Her walking is getting more steady. Last week, she was walking all around the patio without assistance. Her body awareness is increasing. She would walk to the edge of the patio and realize there was a drop down and would stop and walk the other direction. She is great about scooting down the steps inside the house. Before, she would just try to walk off things and wonder why she would fall. We were also practicing having her drink out of a regular cup. She spilt it all down the front of her but then she reached down and picked up an ice cube!!! What balance!!!

Holding steady...

Sophie's seizures have finally stabilize on the 2:1 ratio of the diet. We are holding steady to give her a bit of a rest before we take the next step. Unfortunately, she will not be off the diet before her 2nd birthday but I have a 2:1 ratio cheesecake recipe so she will have a birthday dessert to dig into.

Sunday, September 30, 2007

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 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!!!

Thursday, September 27, 2007


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.

Friday, September 21, 2007

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.

Wednesday, September 19, 2007

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.

Sunday, September 16, 2007

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.

Thursday, September 13, 2007

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.

Monday, September 10, 2007

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.


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.

Thursday, September 06, 2007

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...

Thursday, August 30, 2007


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.

Friday, August 24, 2007

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???

Thursday, August 23, 2007

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 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.

Tuesday, August 14, 2007

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.

Friday, August 10, 2007

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.

Saturday, August 04, 2007


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.

Thursday, August 02, 2007


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 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.

Wednesday, July 11, 2007

Long time, no post (what's new???)...

We increased the ratio to 4:1 to only see an increase in seizures so we are back to 3:1. We are going to Johns Hopkins next Tuesday for a follow up visit to discuss our next option...stop diet? new medication? wean clobazam? I so want her off clobazam but I highly doubt the doctor will think this is the right time.

Sophie's walking is getting better everyday. She is walking everywhere. She just is not consistently steady. We are working on transitioning from a sit to a stand without any assistance. She will be much happier once she can stand up all by herself. Right now she needs something to pull up on. I believe she could stand up by herself if she would only try but she is really dependent on looking for something to grab onto.

We met with her local neuro last week. Sophie had a 1 hour EEG. The EEG showed some improvement over the last one (back in March). Her background rhythm looks a bit better. She is still having bilateral spike waves mostly in the frontal lobe. We also spoke with her neuro in Detroit and he would like to do a repeat PETscan once she is off the diet (you cannot do the PETscan while on the diet because of the change from glucose to ketones). So for now we are waiting to find out what will happen in our appointment at Johns Hopkins.

Sunday, June 24, 2007

Quick update...

Sorry I have not posted in so long. Sometimes I just do not know what to say. Sometimes I just feel like I type the same things over and over again.

Sophie's walking is getting better every day. She went swimming the other day and absolutely loved it. It took her awhile to get use to the water but once she did she had a blast.

We went up to 4:1 ratio. No improvement in seizures. She has been having more frequent seizures throughout the day. We will give the 4:1 ratio a few more days and then talk to the doctor about going back down on the ratio.

Monday, June 11, 2007

Climbing steps...

Sophie absolutely loves climbing steps. Last week she learned how to get back down. Out of nowhere, she scooted her butt down and dropped to the next step. I guess I shouldn't say out of nowhere. We had been working on this. It is just that it is always on her terms. When she decides to do things for the first time, she does it when you least expect it. She does it when you are not trying to get her to do it.

More stable???

Like everything else in life, Sophie's walking is all over the place. Some days she will walk from one room to the other. Other days she can't take more than 3 steps without falling over. But she is getting more stable. She is now able to change directions. Last week, she was standing next to Haley and then walked towards the back door. Once she got to the back door, she turned around and walked straight back to Haley. She did this without even stopping or touching anything to gain balance. She did a complete 180. That has to take a lot of balance. She did it so quickly that I looked at Haley and asked if she really just did that. Since then, she has done it several more times.

Saturday, June 02, 2007

Video of Sophie walking...

More walking...

Sophie's walking is getting better everyday. She can now take up to 20 steps without falling. She is becoming more and more stable. We have seen some improvements in her seizures. They are not as intense and her clusters are smaller. Hopefully, she will continue to progress in the right direction. We are going to increase her ratio for the diet tomorrow.

Tuesday, May 29, 2007

Higher ratio...

Sophie's seizures are still the same. We have been corresponding with the neuro at Johns Hopkins and he has decided to increase the ratio to 4:1. She is currently at 3:1 ratio. As soon as we get the new recipes from the dietician, we start the new ratio.


Sophie's walking is getting so much better. She is getting steadier and walking further. Last week, Sophie's physical therapist said that Sophie is taking toddler steps. She is also great at climbing steps. Sophie also was casted for new foot orthotics last week. She currently has UCB which fit right into the shoe and are below the ankles. She was casted for SMO which also fit right into the shoe but will come above the ankles. This will give her more support and hopefully she will start walking even better.

Tuesday, May 22, 2007

Better night...

Sophie had a better night last night. What a relief!!! She did not wake up until 5:30am. She had about 50 seizures. They were not mild but they were not as intense as they have been. No screaming and just a little crying. She is still sleeping. Hopefully, she will have a good day day. I am in such a positive mood right now. I was starting to lose hope or maybe it was just pure exhaustion. Either way, I am very hopeful right now.

Monday, May 21, 2007

No more Zonegran...

We weaned Sophie off of Zonegran. It feels so good to have one less medication to give her. We have also seen a spike in her alertness and moodiness. She has become quite the demanding one. I absolutely love it. I will take whatever personality she brings. Though it was quite the trip to Chicago last Wednesday. Luckily, Grandma Debbie was there to help. Sophie was all over the place on the plane. On the way home, we were able to settle her down by letting her drink out of a real cup. That is one of her most favorite things to do. She will drink and drink and drink out of a real cup. If she has some cytra-K left to drink (it's a powder mixed with water that is suppose to help prevent kidney stones), put it in a real cup and she will drink it. Oh, by the way, her head is looking great. I think only 2 more trips to Chicago and 6 more weeks in the helmet and we are done!!!

Another long night...

Sophie woke up several times last night. She went to bed at 8:15pm. At 9:20pm, she woke up and had 4 mild seizures. Then around 12:30am, she woke up and had around 20 mild seizures. I brought her into bed with us and she had a hard time falling back asleep. I was too tired to bring her back upstairs. I think she was in and out of sleep for about 2 hours. She would lay next to me and then sit straight up and say "dadada". Then I would get her to lay down next to me again and about 15 minutes later she would sit up again. At least, she did not appear to be having any seizures. Then at 4:30am, she woke up and had around 50 bad seizures. Her whole body would tense up and she would scream and cry. These seizures just break my heart. It is so hard holding her while she is having these seizures. I just hold her and pray that they stop. I hate counting her seizures. I hate it. I hate it. I HATE IT!!! It feels like the seizures are just not going to stop and the number just keeps getting higher. It is the worst feeling in the world. My poor baby girl...I cannot imagine what that must feel like.

Up to 10 steps...

Sophie's walking is getting so much better. She can take about 10 steps at a time before falling over. Usually, her right foot gets caught up and she falls. She walks like a drunk...never in a straight line. Tomorrow we have an appointment to get casted for new foot orthotics. She has UCBs and now she is getting SMOs. The SMOs (supramalleolar orthotic) will give her a little more support than her UCBs.

Friday, May 18, 2007


Sophie is still having nightly seizures. She has been waking up around 2:15am and having a cluster of seizures. When I hear her make the slightest noise at this hour, I know to jump out of bed and get her quickly. Well, the other night, I was just too exhausted to jump out quickly. So by the time I got to her, she had already had a seizure and hit her face on the side of her crib. It was dark but she looked to be okay. So I picked her up and put her in bed with us. She had about 75 seizures. They were the bad ones. Where she shakes and screams and cries. Eventually, we all fell back asleep. The next morning when I got out of bed, I saw a large brown spot on the sleeve of my shirt. Well, it turns out that she busted the inside of her lip open and bled everywhere...through the pillowcase onto the pillow, through the sheets onto the mattress pad, and on her bunny. Poor girl. I feel so guilty. If only I had gotten to her quicker... But my guilt is nothing compared to what she must feel. I would do anything to take away her pain yet I can't even imagine what it must feel like to go through what she goes through.

Monday, May 14, 2007

Nightly seizures...

Sophie is back to having nightly seizures. It is so sad. It just breaks my heart.

Sunday, May 13, 2007

Happy Mother's Day...

Happy Mother's Day to all mothers. I would like to say thank you to one mother in particular - my mother-in-law, Debbie (aka Grandma Debbie). She has always been there for me. Wow, I do not even know where to start...from helping me plan my wedding, to bringing Haley out to visit when Brandon and I lived on the East cost, to everything else in between. No matter what it was, she would step up in such a non-overbearing way that it was always such a relief to have her around when I really needed someone (not to mention the fun we have when everything is going great). And, hmmm, I have really needed her lately. Ever since Sophie was born, she has been so helpful...from bringing over dinner, to watching Sophie so I could get some cleaning done or run errands, to a endless list of other things. And now ever since Sophie's diagnose, she has been... I just can't seem to summarize it in one word or even one phrase. Instead, I will say thank you for all the things you have done for me.

Debbie - Thank you for coming over in a moments notice. Thank you for listening to me when I needed to vent. Thank you for all the wonderful advice. Thank you for understanding. Thank you for all the little things. Thank you for being so great with Haley and Sophie. Thank you for going to Baltimore with us - I don't think I can ever thank you enough for that. When you once again unselfishly volunteered your time to go with us, I thought sure that would be great. What I didn't realize was that it made a world of a difference. Instead of Brandon and I being overwhelmed and exhausted, we came home from the trip excited and ready to make this diet work. Thank you, thank you, thank you, THANK YOU for coming with us. Thank you for joining Sophie and I on our day trips to Chicago since she started the diet. You once again unselfishly volunteered your time - THANK YOU. Instead of me being overwhelmed with the diet and traveling alone with Sophie, you made it easy. You make my life easier. I guess that is the phrase I was thinking of but couldn't put my finger on. Thank you for making my life easier. Without you, I am sure I would have had more meltdowns than I could have handled. I so appreciate you more than I can say. That is probably not something a lot of daughter-in-laws say to their mother-in-laws. Thank you for everything - this list only begins to touch on the things you do for us. Happy Mother's Day.

Thursday, May 10, 2007

One year ago...

One year ago today, Sophie had her first EEG and was diagnosed with Infantile Spasms. I can remember that day so clearly in my head. We rushed immediately from the neuro's office straight to the hospital. Wow. I just thought this battle was going to be over by now. I remember thinking that ACTH was going to stop the seizures. I remember thinking that a year from now, this was all going to be just a memory...

Sunday, May 06, 2007

Say it while you can...

I have good news to share. Why is it that when people share good news they sometimes follow it by saying "knock on wood" or "if I say it out loud my luck might change"??? Well, for the past 5 nights in a row, Sophie has been waking up around 9:45pm and having some bad seizures. These are the hardest seizures to watch. First of all, just the fact that it wakes her up breaks my heart. I remember the days when Sophie was just a newborn and I had to wake up every 3 hours to feed her. I can't imagine what it must feel like to wake up to a cluster of seizures. On top of that, she screams and cries after each one. It just breaks my heart. Well, tonight she woke up at 9:15pm. Brandon went in to rock her back to sleep and NO SEIZURES!!! It is 11:25pm right now and still NO SEIZURES. I am so happy for my little baby girl. If nothing else, she should at least get a peaceful night of sleep. During the day, she has been having 2 or 3 clusters of seizures. She usually has a cluster when she wakes up in the morning then after each nap. Hopefully, tonight will be a sign of more seizure free times to come. I'm not afraid to share the good news. There is no knocking on wood or worrying if I say it out loud my luck might change. Instead, I will take each moment as it is and cherish them.

Friday, May 04, 2007

Pictures from Baltimore/Johns Hopkins...

Playing at Ronald McDonald House

Getting a foot massage by Daddy

Newly remodeled kitchen at RMH - absolutely gorgeous
Day 1 in hospital -
First "meal" after 24 hour fast
(1 tbsp of scrambled keto eggnog)

Day 2 in hospital -
Very lethargic but luckily had "Hootie" to cuddle with

Day 3 in hospital -
First ketogenic meal

Cruising the halls in the hospital
Woohoo!!! On our way home!!!