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.

Walking...

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.

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.

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.

Guilt...

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.

Nightly seizures...

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

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.

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...

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.

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!!!

Insane...

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!!!

Ups and downs...

What a week it has been!!! When we came home from Johns Hopkins last Thursday (the 19th), I was ready. I had convinced myself that this diet was not going to be that hard. Then reality hit Friday morning when I had to prepare my first keto meal. Friday was a whirlwind. I think the only time I left my kitchen was to go to the grocery store. I had to prepare 3 keto meals and 2 keto snacks. If I had time to breakdown and cry, I would have. This diet has been emotionally and physically exhausting. Thank goodness Brandon was home all week. I am not sure I would have made it through the week otherwise. Things have been getting easier in preparing the meals but it is still emotionally exhausting. Sophie's seizures have been all over the place. She has good days and bad. One day, she will only have a few seizures. Then the next day, she will have 60 seizures. There is so much fine-tuning that needs to be done on this diet. It is so hard to figure out what we are doing right and what we are doing wrong. To top things off, Sophie broke out in a rash last Saturday (the 21st) that seemed to be getting a little worse each day. Then on Wednesday (the 25th), the rash was all over her body so I took her to the Pediatrician. Sophie had a virus which resembles chicken pox but much milder than chicken pox. It was probably something she caught while at the hospital. Sorry I haven't posted in so long but every time I sat down at the computer it had to do with meal planning. I still believe that this diet will work. Thank you all for your kind messages and prayers. I will post pictures soon.

Home Sweet Home...

We are home!!! We are all so happy to be home!!! Sophie is back to her usual self!!! I'll update more later. I just wanted to let everyone know that we made it safe and sound.

What a great day!!!

It was so great to see Sophie almost to her old self. She was so much more alert and playful. We even got to play outside for awhile. She loved going down the slide. She even climbed up the steps BY HERSELF!!! And then as soon as she got to the top, she would try to stand. We would hold her hands and then she would walk across to the twisty slide. She would then sit down and scoot her butt until she went down the slide. She has no fear. She didn't want to go down the small straight slide that was right next to the top of the steps. Instead, she would go straight to the tall twisty slide.

Actually, she has been trying to push to a stand all day today. She will in the crawling position in the middle of the floor and then push her legs straight with her butt up in the air and then try to stand. Ahhh, poor girl, she tries so hard and she is almost there. It must be so frustrating. But it is that frustration that pushes her to keep trying. She never gives up.

Sophie ate all her meals today without throwing up. She even got a regular keto meal for dinner consisting of chicken, butter, cream, one small piece of broccoli, and a tiny bit of jello. The amount of butter was just as much as the amount of chicken. I almost gagged when I was feeding her straight butter. But she loved it. I gave her the butter first thinking that I should try to get it down her first. As soon as she got her first bite, she started banging on her tray for more food. She gobbled all the food down. Then we mixed the heavy whipping cream with some water and heated it up in a bottle. She downed the bottle and wanted more. So we immediately gave her a bath to take her mind off things.

She had a lot of fun today playing with her new "keto" friends. There are 3 other families that started the diet with us. It has been great being able to go through this with other people who can completely relate to you.

Brandon is staying the night in the hospital with Sophie tonight. When I last spoke to him at around 9pm, she was sleeping. Hopefully, she will sleep through the night and be well rested for our trip home tomorrow. I can't wait to be home!!!

Thank you...

Thank you all for your wonderful words of encouragement and prayers. Your support means so much to us. Sophie is blessed to have so many wonderful people sending her positive thoughts. Thank you all for caring.

What a blur...

The last couple of days have been a blur. Is it really only Tuesday? I will try to recall the details but everything seems to run together. We arrived at the hospital at 8am on Monday morning. Sophie was doing okay so far with the fast. She fell asleep during the orientation meeting with the dietitian and slept through the meeting with the pediatric neurologist. Around 11am, we checked into our hospital room. She was in and out of it for the rest of the afternoon. Around 3pm, she threw up a bit. Then FINALLY it was dinner time. She got one-third of the amount of a normal "keto meal" which was ONE OUNCE of keto eggnog (heavy whipping cream, eggs, vanilla and oil). You can either drink it like a shake or heat it up for scrambled eggs. We chose to heat it up for Sophie so it was more like "real" food. Sophie loved it, like always. She loves to eat. Her meal schedule for the hospital is as follows: one-third keto eggnogs for dinner, breakfast and lunch; two-thirds keto eggnogs for dinner, breakfast and lunch; first real keto meal for dinner Wednesday night.

After dinner, Sophie did really well. She played a bit and stayed up until 9:30pm. Sophie has a new friend named Angelo. Angelo is 21 months old and is a lot like Sophie. He is playing hard to get but Sophie is charming him with her precious smile.

Under the circumstances, Sophie slept great. Brandon and Debbie went back to the RMH while I stayed the night in the hospital. Sophie woke up a few times in the middle of the night but fell right back to sleep. She even slept through the nurse taking her vitals and checking her glucose by pricking her toe. She has her glucose checked every 6 hours.

Tuesday morning, Sophie woke up around 7:15am. She threw up 3 times by 8:30am including her entire breakfast. Even though she threw up her entire breakfast, she still could not have anything else to eat until lunch. Needless to say, Sophie was very lethargic and slept most of the day. It was really hard to get a smile out of her. If she wasn't sleeping, then she was staring off into space.

No worries, though. It is normal for Sophie to be acting lethargic and nauseous. It is a total metabolic shift for her body. By fasting, Sophie's body is highly ketonic. Her body is now burning fat which turn into ketones for energy. Normally, the body burns carbohydrates which turn into glucose for energy. It is hard to watch her like this but it is actually a good thing.

Sophie is having a few more seizures than usual. Again, no worries. It is not abnormal to have more seizures because of changes to her schedule and environment. Sophie usually has seizures upon waking up. Since she is drifting in and out of sleep so much, she is having seizures more frequently. The doctor said that you should at least see some improvement after two to three weeks and not to judge the first few days. We still believe that this diet is going to work! I am anxious to have her completely on the diet and eating normal keto meals.

Tonight, Grandma Debbie is staying the night with Sophie in the hospital. Sophie was ready for bed when Brandon and I left for the RMH at 8:30pm. The nurse took her vitals and checked her glucose level. Everything looked great, so the nurse felt she wouldn't have to check Sophie's vitals or levels in the middle of the night. Now that Sophie is on a two-thirds meal plan, we do not have to worry much about Sophie's glucose levels. It was hard for me to leave the hospital but I knew she was in great hands. Sophie fell asleep soon after we left. Grandma Debbie had all the lights turned off and just crawled into bed herself when Sophie woke up and was ready to go. I haven't talked to Grandma Debbie since then so who knows what they are doing now. Good luck tonight, Grandma Debbie!!!

Welcome to Baltimore...

We made it. I am actually using a computer at the Ronald McDonald House in Baltimore. This place is great. It has a huge playroom which Sophie has already enjoyed tremendously. When you walk into the room we are staying in, it looks like a regular hotel room with 2 beds and a bathroom. Then you walk around the corner and there is a small room with a door with a crib and another bed in it. This place also has a gorgeous kitchen that was just remodeled and different organizations come by everyday to cook dinner. The microwave is so high-tech that Brandon had trouble trying to figure out how to warm up Sophie's bottle. This place is really a home away from home. If we were at a hotel, I am not sure what Sophie would be doing right now (which is sleeping). I am so grateful for this place and the organizations and people that make it possible for places like this to exist. We will be here until Thursday and I will try to post daily to let you know how she is doing.

Please pray with us...

There is a passage from the Bible that I would like to quote. It is from Mark 9:14.

When they came to the other disciples, they saw a large crowd around them and the teachers of the law arguing with them. As soon as all the people saw Jesus, they were overwhelmed with wonder and ran to greet him.

"What are you arguing with them about?" he asked.

A man in the crowd answered, "Teacher, I brought you my son, who is possessed by a spirit that has robbed him of speech. Whenever it seizes him, it throws him to the ground. He foams at the mouth, gnashes his teeth and becomes rigid. I asked your disciples to drive out the spirit, but they could not."

"O unbelieving generation," Jesus replied, "how long shall I stay with you? How long shall I put up with you? Bring the boy to me."

So they brought him. When the spirit saw Jesus, it immediately threw the boy into a convulsion. He fell to the ground and rolled around, foaming at the mouth.

Jesus asked the boy's father, "How long has he been like this?"

"From childhood," he answered. "It has often thrown him into fire or water to kill him. But if you can do anything, take pity on us and help us."

"If you can?" said Jesus. "Everything is possible for him who believes."

Immediately the boy's father exclaimed, "I do believe; help me overcome my unbelief!"

When Jesus saw that a crowd was running to the scene, he rebuked the evil spirit. "You deaf and mute spirit," he said, "I command you, come out of him and never enter him again."

The spirit shrieked, convulsed him violently and came out. The boy looked so much like a corpse that many said, "He's dead." But Jesus took him by the hand and lifted him to his feet, and he stood up.

After Jesus had gone indoors, his disciples asked him privately, "Why couldn't we drive it out?"

He replied, "This kind can come out only by prayer."*

*Some manuscripts say "prayer and fasting".

Sophie is to begin her 24 hour fast after dinner on Sunday. She will then be admitted into John Hopkins at 8am on Monday. Some children react negatively to the diet and are unable to tolerate it. Some children become seizure-free within a few days of starting the diet. With 7 different failed medications, this is our last option. I am not sure where to go from here if the diet does not work. So the diet must work. I must believe from the bottom of my heart that this diet will work. I must believe with all my faith that God will answer our prayers. As we enjoy our last "normal" meal together Sunday evening, we will be saying a very special prayer for Sophie. Please pray for Sophie as you enjoy your Sunday evening meal with your family. Thank you all for caring so much about Sophie.