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!!!

Thursday, May 03, 2007


WARNING: This diet can cause the most sane person to go insane.

If the diet was a pill, this warning would be required to be posted on the label of the bottle. There are so many variables in this diet, that it is so hard to figure out what is working and what is not working. Then on top of that, you have the variables of everyday life. In the last 2 weeks that we have been home from the hospital -
  1. Sophie has had a rash caused by a virus which finally cleared up last Saturday.
  2. Only to have another rash return which was caused by who knows what.
  3. To now having a runny nose.
So we wonder. We wonder if she had a bad seizure day because of one of the above or maybe it was something she ate or maybe it was because her nap schedule was off or maybe it was because... I could go on forever with the scenarios that run through my head. So now we are trying to eliminate some of the variables. She will eat the same thing everyday for the next 7 days and she will be on a tight nap/feeding schedule. We are also going to start checking her blood ketone and glucose levels. I haven't quite figured out the machine but I am working on that. So that is where we stand. Sophie has good days and she has bad days. I still believe that this diet is going to work. I just need to figure out how!!!