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.

Sophie is on the go...

Sophie has taken her first step!!! Last week, during her developmental therapy session, Sophie was leaning back on the couch and took two steps toward her therapist. Then later that day, she took a couple of steps towards Grandma Debbie. Now, she can take up to three or four steps before falling forward. Yesterday at Aunt Erin's house, Sophie spent at least a half hour repeatedly trying to walk. Aunt Erin's house has a drop down living room which is carpeted. It is perfect because Sophie will sit on the ledge and then stand up and take a couple of steps. Then she will crawl back, climb up the step, turn her body around, sit down, stand up, and take a couple of steps. It was so fun watching her do this over and over again.

Sophie is also able to climb steps!!! On Easter Sunday, Brandon sat Sophie down by the front door and she climbed over to the steps and started crawling up them. It was so amazing to watch her take the initiative to do something on her own.

Pictures...

Sophie loves to play with her toes and to chew on her sock while she is wearing them.
Sophie sucking her everloving thumb.

Sophie's favorite standing position.
Sophie is always going for the couches so she can lean back on them.
If you are holding her hands and she is a couple of feet away from the couch,
she will walk backwards until her butt hits that couch. It is so adorable.
Sophie standing all by herself.
She will push away from the couch for a couple of seconds
and stand before falling back into the couch.
Sophie having a drop seizure.
I can't believe I caught it on camera. They happen so fast.
You can see her knees buckling and her body just drops.
There is so much force behind the seizure because her body just collapses.**
This is the reason she hits her head so hard.
A not so happy Sophie.
Her stitches look like a big scab because of the Dermabond they put on top of it.

** Not all of her seizures are this bad. Some are subtle head drops. Sometimes she is able to catch herself before she hits the ground.

What a day...

The day started out great. Sophie woke up at 6:00am and but immediately went back to sleep until 8:15am. She is such a snuggle bug. I love that about her. She woke up in a great mood which has been unusual for her these last couple of days with her stuffy nose. I gave her a bottle and she drank it up and played around a bit with no crabbiness. Then I put her in her highchair for breakfast. She ate great. She had about 10 drop seizures in the morning which is about average. So after she ate breakfast I turned on a video in the living room for her to watch and went to the kitchen to make some coffee and eat breakfast. Before I even made it to the coffee pot, I heard Sophie fall and she started crying. She had her helmet on so I did not think it would be anything serious. I picked her up and she had a glob of red stuff on her eyebrow. I looked at it and wondered what it was. It was thick and did not seem like blood. Then all of the sudden it started running down her face and into her eye and then I realized she was bleeding. I grabbed a tissue and started soaking the blood up. It did not seem like it was going to stop. I started crying hysterically overwhelmed with guilt and then immediately called Uncle Jason (who is a nurse) and asked him to come over. He rushed over but luckily by then the bleeding had stopped for the most part and I had calmed down a bit. Sophie, being the trooper that she is, immediately lit up when Jason walked in the door and gave him big smiles. He took a look at it and said that it would probably need stitches and recommended that I take Sophie to the emergency room at Children's Hospital. I packed the diaper bag and off we went. We arrived around 10:30am and Grandma Debbie met us up there. I am so thankful she came because it turned out to be a very long day. After 2 sets of stitches (the first set popped out) and begging the nurse to unhook her, we finally arrived home at 5pm. Sophie looks like our little boxer with 5 stitches about her left eye and an old scar on her left cheek.

The painful details of our emergency room visit...

As we were the only ones in the waiting room at the time, Sophie was admitted into the hospital within 20 minutes. The resident doctor "RD" came in and took a look at it. She said that it did not look too bad and that it probably would not need any stitches or Dermabond but that she has been wrong before. Then the RD came back in with her supervising doctor "SD". The SD decided that Sophie would need stitches since the skin was spread too far apart and she could not squeeze it close enough together to use Dermabond. The SD said that Sophie would need stitches in order for the cut to heal properly and that stitches would give the best results to minimize scarring in this situation. The SD also said that Sophie would need to be sedated for the procedure and that we would need to wait 30 minutes before we could sedate her so that her stomach could settle from breakfast. Sophie was so exhausted by this point that she fell asleep as soon as the SD walked out of the room. Then shortly after that another doctor came in to talk about the sedation. Sophie was to be sedated with a drug that would be administer through an IV. The drug would not put Sophie completely under but that she would not be conscious enough to remember anything. Then shortly after that a nurse came in to start the IV and hook her up to various machines (pulse monitor on her toe and 3 leads on her chest). Sophie barely woke up for the IV. By this time, 30 minutes had passed and I thought this was going great. I thought they would come in and sedate her and stitch her up without her even waking up. Well another 30 minutes went by and still no stitches. Then another 30 minutes went by and still no stitches. By this time Sophie was wide awake. All the while they kept saying it would be soon and that they were just getting the team together. Sophie was all over the place with nowhere to go considering she was all hooked up in a small room. We did not even have a crib to put her in. Sophie was passed back and forth between Grandma and me trying to entertain her the best we could. Finally, the team was assembled. The RD was to do the stitching with the SD watching closely, the other doctor came back for the sedation (no anesthesiologist required), and a nurse to chart the events. Everything was going smoothly. Sophie would squirm a bit every time the stitching needle went in but you could tell she was not in pain. Finally, they were done and I walked over to Sophie. I looked at her head and thought it did not look much better. Then Debbie walked over and said it looked the same. Then the SD looked at it and said that the stitches popped out!!! So there I was holding Sophie's arms down while the SD went to get another sterile kit and the other doctor went to get additional sedation. The SD said it was fine if I wanted to stand there and hold Sophie down but that there were going to be needles. No problem as I held Sophie down for over 10 weeks while Brandon gave Sophie a shot in the leg with a pretty big needle on a daily basis. That little hook they used to stitch with was nothing compared to that. So there I was holding Sophie down in this very warm little room while there was blood running down her face and into her hair as they shot her up with more litacaine and started stitching her back up. If you would have asked me a year ago if I could have done that, there would have been no way. It is amazing how much a child will change you. Well, this time the stitches held and they put Dermabond over the stitches as extra precaution. After 30 minutes, Sophie woke back up and was so thirsty. She downed 2 sippy cups full of water and some apple juice. After that she was ready to go but they wanted to observe her for 30 more minutes. So again, Debbie and I passed her back and forth and tried to entertain her. After the 30 minutes were up, I tracked down the nurse to unhook everything and to discharge her. She decided Sophie needed another 10 minutes of observation. Why? I am not sure as Sophie was full of energy and ready to just get down and play. So another 20 minutes went by and I tracked down the nurse again. She said Sophie needed another 10 minutes of observation. We complied. After 10 minutes, I found her again and begged her to let us go. She complied and we were finally on our way home. When we got home, I was scared to put Sophie down. I think I will be for the next several days. I cannot imagine what a drop seizure onto those stitches would feel like. I can only imagine what it must feel like for Sophie to go through everything she does and yet she is so resilient and happy (for the most part).

Chicago, once again...

We were in Chicago AGAIN so Sophie could get fitted for her new helmet. Luckily, this one fits great and no red spots so far. This will be Sophie's last helmet. She will probably wear it for about 8 to 10 weeks. Hopefully, we will see as much improvement in this one as we did our last one. We stayed with Aunt Erica and Uncle Ricky, once again. Sophie misses their cat, Sylvester, so much. I put one of Sophie's Baby Bumblebee videos in today and there was a cat playing around. She immediately started laughing and lunged for the TV. We had a great time visiting.

Another EEG (her 8th one)...

Sophie had another one hour EEG today. We wanted to get a baseline at how her EEG looked since being on Clobazam and also to have something to compare to after she starts the ketogenic diet. Her EEG has not changed since the last one she has had which means that it is still relatively bad. In technical terms...front and temporal epileptic discharge consisting of spike and sharp wave discharges, sleep activity looks good and her background rhythm looks good with no suppression.

Thank goodness for family...

Last weekend, Brandon decided to take a guy's trip to Florida to see the Cardinals play in spring training. Actually, it was a long weekend. Brandon left on Thursday (after being out of town Monday through Wednesday for work) and came back on Monday. Luckily, I have a very supportive sister who took me in for the weekend. Actually, her entire family took me in. They were all planning on going to their condo on the lake for the weekend and invited Sophie and me along. We had a wonderful time and it saved me from losing my mind. I look forward to the weekends more now than ever. The weekends are a time for me to get a real break from being a mom and all the responsibilities that come with it (especially being a mom to a child with special needs). When Brandon told me he was planning on taking this trip, I lost it. The thought of not having that much needed break was more than I could handle. My weeks are jam packed with doctor appointments, therapy appointments, researching new treatments, etc. Just to give you an idea of a typical week, here are our appointments this week: Monday - dentist, Tuesday - physical therapy, Wednesday - pediatric neurologist and EEG, Thursday - casting for foot orthotics, developmental therapy, follow up with ENT, fitting for ear plugs, fly to Chicago, Friday - fitting for new cranial molding helmet. I wish I could say that our weeks aren't usually this crazy, but they are. If it is not one thing than it is another. I keep thinking that things are going to slow down, but they don't. In two and half weeks, we will be leaving for John Hopkins to start the ketogenic diet. Hopefully, this will be it. Hopefully, the diet will be Sophie's "miracle drug" to stop the seizures. Hopefully, in a few years from now all of this will be a distant memory. In the meantime, thank goodness for family.

Dentist...

Yesterday was Sophie's first trip to the dentist. Luckily, she had her two older cousins, Colin and Nicholas, show her the ropes. My sister, Erin, and I took all three kids to the dentist at the same time. All three had great checkups!!! Sophie officially has nine teeth (I think there is another coming in but it hasn't broke through the gums yet). She has five front teeth and four molars.

Clobazam and seizure update...

Sophie is now on 10mg/day of Clobazam (5mg in the AM and 5mg in the PM). This is the maximum dose she can be on. Clobazam seems to be somewhat controlling her seizures (it is always hard to know what is working or not working...between ear infections and teething, we never know whether it is the drug or the environment). She has, on average, about 25 seizures a day (down from around 50 to 75 a day). Hopefully, with the ear tubes, we will no longer have to worry about ear infections and antibiotics.