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.

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.

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.

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.

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.

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.

On the go...

Sophie is becoming much more mobile. She is constantly pulling herself to a stand and cruising around anything she can get her hands on. Ever so often, she is able to stand for a few seconds without holding on to anything. She is slowly gaining her balance. Unfortunately, she is not gaining enough balance quick enough to enable her to walk. Between her balance issue and mild hypotonia (low tone), Sophie's physical therapist recommended that Sophie get foot orthoses. So Sophie will be getting submalleolar/UCB inserts. The way her therapist explained it to me was that this will even out her walking surface so that she is not so wobbly and it will allow her to strengthen her leg muscles. The downside is that the inserts do all the work which prohibit her ankle muscles from strengthening. So once Sophie is up and running, we will then have to start weaning the inserts so that her ankle muscles can strengthen.

Ketogenic diet...

We decided to do the diet at John Hopkins and are scheduled to start the diet on April 16th.

Kindermusik...

Sophie loves Kindermusik. It's a place where we go to sing songs, dance, and play with musical instruments. The class is every Monday. Two weeks ago, Grandma Debbie took Sophie to Kindermusik so I could have a break and get some things done around the house. This past Monday, Brandon took the day off work and took Sophie to Kindermusik (I tagged along to take pictures).

On our way to Kindermusik (crossing her feet like always).

Daddy and Sophie playing with the egg shakers.

Clobazam...

We finally got Clobazam in the mail two weeks ago. It only took five weeks to be shipped from Canada. Luckily, we bought a three month supply. Sophie started the Clobazam the next day which replaced the Clonazepam. She started out at 2.5mg/day and is now at 5mg/day. She is still currently on 150mg of Zonegran. She is tolerating the Clobazam fairly well. We have seen a slight decrease in seizure and will continue to increase the Clobazam 2.5mg each week until we reach 10mg/day.

Ear tubes...

Last week Sophie got another ear infection. Needless to say, she was put on yet another round of antibiotics (6th round in the last 3 months) and we scheduled the appointment for ear tubes. She actually got the ear tubes today. We arrived at the hospital at 6:30am and we were on our way home by 9am. As always, Sophie did amazingly well. She did not get nauseous and she cried just a little bit. Actually, she has been crying a little bit on and off all day today. It is kind of crazy. She will be playing and then will just make the saddest face and start crying. It lasts for just a couple of minutes and then she is off playing again.

Chicago...

Sophie and I have been to Chicago twice since my last post (sorry I am not being very diligent in updating the blog). Our first trip to Chicago was three weeks ago with my sister, Erin, and her two sons, Colin and Nicholas. We drove up on Thursday and stayed with my other sister, Erica, and her husband, Ricky, until Sunday. I have to admit, the thought of being in a car with 3 young kids seemed overwhelming at first but it went surprisingly well. There was absolutely no crying or screaming or fighting - wow!!! It took us about 10 hours to get there (it should normally take about 5.5 hours). We left on Thursday around 12:45pm (right after picking Colin and Nicholas up from school) and stopped around 2:15pm to have lunch. That was our first surprise...that the kids lasted until then to eat lunch all the while not complaining about being hungry (hmmm, maybe the fasting for the keto diet will go better than I think). Then we drove about an hour and a half to the Children's Discovery Museum. The kids absolutely had a blast playing and we ended staying there from 5:30pm until they closed at 8pm. It was completely empty since it was a school night. The museum allowed us to bring in food so I left to get dinner while all the kids continued to play. By the time we reached Erica's and Ricky's house, the kids were fast asleep and transferred from the car without waking up.
We had a fun-filled weekend between going to Chuck-E-Cheese, bowling, playing with Sylvester the cat, etc. Sophie's appointment for her helmet went well. They made minor adjustments and we were on our way. The trip home went as smoothly as the trip there and we only made one stop to have lunch. Thank you again, Erica and Ricky, for your wonderful hospitality. We cannot wait to come visit again.

Our second trip to Chicago was last Friday. This was a fly there and fly back in the same day trip with just Sophie and me. Sophie is such a wonderful traveler. Though, the flight home was challenging with having to sit in a middle seat while holding Sophie in my lap. The plane was about 45 minutes delayed coming into the airport. Once the plane arrived and people started getting off the plane, I noticed that Sophie had a smelly diaper. So I rushed her to the bathroom to change her diaper and by the time I got back, they already started boarding. We were flying Southwest so there is no assigned seating but Sophie and I get to pre-board. So I rush up to the front and realized that I cannot find my boarding pass. Argh!!! So I got a new boarding pass and by the time we got on the plane there were only middle seats left. We sat in between a male college student and an older lady. Both were very understanding. Sophie was very active but at least she was happy. Her appointment went well. Her head shape is improving. This time they took measurements and pictures along with making minor adjustments to the helmet. Her cranial vault asymmetry went down from a 7mm to 4mm. Her skull base asymmetry went down from 5mm to 3mm. This is great improvement considering her old orthoticist said that there was nothing else we could do!!!

Ketogenic diet update...

I received a call from John Hopkins on Friday. They have reviewed Sophie's medical records and have accepted her into the program. The only problem...the next opening is not until April 16th. I really do not think I can wait two months to start the diet. Sophie is having between 50 to 75 seizures a day. It is so hard to watch her have seizures all day long. Now that she is more mobile, her seizures have become more dangerous to her physically. She will be standing while playing with a toy and then suddenly have a head drop seizure and smashes her face right into the toy. It is so sad.

Here's a picture of her favorite toy.
She loves to push this toy around the room.

The other night, when she was playing with her favorite toy,
she had a seizure and cut the side of her face.
You can also see her busted lip from when she had a seizure
while sitting in her highchair.

Cruising...

Definition of cruising: Holding on to an object while walking sideways. I think Sophie's physical therapist has some competition. Grandma Debbie came over last night and had Sophie cruising from one toy to another. Sophie has a few tall toys in which she stands while playing with them. Grandma Debbie pushed them together and Sophie was cruising around. Sophie is also now able to stand without support for a few seconds. She is getting so strong. It is only a matter of days before she starts walking by herself.

Walking with assistance...

Wow, Sophie is really starting to get around. She will crawl from one room to another to look for me. Before, if I wasn't in the room, she would cry until I came within five feet of her and then she would crawl to me. She will also go from one toy to another (i.e. she will play with her push toy and then get down and play with her activity table). She is also walking very well with her push toy. I wonder if it has anything to do with the fish oils I started giving her a couple of weeks ago...hmmm. She has also started cruising around the furniture. I use the term "started" very loosely as she has only done it a couple of times and only moved a couple of feet, but still she is getting there.

Another specialist...

We met with the Otolaryngologists yesterday. Of course he recommended that Sophie get tubes put in her ear. I am on the fence on whether or not to get tubes for her. When he looked in Sophie's ear, they looked perfect...no infection, no fluid. So I am thinking that maybe I will wait and see if she gets another ear infection. You can get tubes put in while you have an ear infection. Maybe she is over the hump. On the other hand, even if she is over the hump for this cold and flu season, there is always next year. Do we really want to deal with another ear infection??? Decisions, decisions, decisions!

15 month checkup...

Sophie had her 15 month checkup with the pediatrician last Wednesday. Bad news...her ear infection has gotten worse. We are on a new antibiotic (5th one in the last two months). Needless to say, we are now going to see an Otolaryngologists (Ear, Nose and Throat Specialist). Sophie continues to surprise us with her height. She is 32.75 inches tall which is 97th percentile on the charts. On the other hand, she has dropped down to 70th percentile on weight. She weighs 24 pounds 4 ounces.

Sophie continues to get stronger every day. She is now able to walk across the room while pushing a toy without our assistance!!! She gets so frustrated that she cannot walk on her own. All she wants to do all day long is stand.

By the way, we are still waiting on the Clobazam. Also, we traveled to Chicago on Friday so Sophie could get an adjustment on her band. It is fitting much better now.

Arrgh...

Nothing can ever be easy. I just got off the phone with the pharmacy in Canada that we ordered the Clobazam from. It has been two weeks and we still have not received it. They had shipped the drug on January 13th which is twelve days ago. They have a call out to see if it is being held up by the FDA. Most likely we will receive the package, it is just a matter of time. The FDA will occasionally pull a package and hold it for a couple of weeks. I just want to start this drug as soon as possible in order to give it adequate time before we start the ketogenic diet (which would most likely be the first week in March). I am really hoping the Clobazam works. Not just because of the obvious reason of wanting to stop the seizures but I really do not want Sophie to go on the ketogenic diet. The more I read about the diet, the more overwhelmed I feel. If I think my life is crazy now between all the doctor appointments, therapy sessions and traveling, it is nothing compared to what my life will be like while Sophie is on the ketogenic diet. But, of course, I will do anything that could possibly stop these seizures.

Another ear infection...

I took Sophie to the pediatrician this morning. She has another ear infection. She just cannot catch a break! This will be her fourth round of antibiotics within the last two months.

She still has a pink spot on her head from her band. I spoke with Cranial Tech and I have been putting hydrocortisone cream on the spot to reduce the redness. I also had to buy moleskin to put in the inside of her band to try to reduce the friction so that she could start wearing her band again. Hopefully, this will work.

Erin, Colin, Haley and I went to Time For Dinner tonight. I love that place. It really feels like I am making a home cooked meal without bringing the mess and time into my own kitchen. It is also so much healthier than eating out all of the time. Not to mention, Haley has so much fun and really gets involved with meal planning. Thank you Uncle Jason and Aunt Colette for watching Sophie. It sounds like she had a great time.

Sophie also did really well in her developmental therapy session this morning. She started using her pointer finger to push buttons. That is a great foundation for her future communication skills. Sophie also did a lot of pulling to a stand today. I think she has that skill mastered now. I have been doing a lot of research on her low tone lately. It seems that certain supplements can improve her tone. Actually, I have been doing a lot of research lately on supplements in general. I am in the process of setting up an appointment with a nutritionist that knows a lot about using supplements for children that have developmental delays.

As always, there is so much going on...

I really need to start posting more often because when I wait so long in between post, I never know where to start. Here goes... We met with Sophie's local neuro last week. Since we are still waiting for the Clobazam from Canada, we are going to start Clonazepam in the meantime. Also, we discussed the next option if Clobazam does not work and we decided that the ketogenic diet would be the next best option. I talked with John Hopkins regarding the ketogenic diet. In their words "We are the premier center in the world for clinical and research expertise regarding the ketogenic diet, having enrolled approximately 700 children over the past few decades". In my research, I have found this to be true. So this is the process in order to enroll Sophie in the program...

I must gather together all of Sophie's medical records including copies of all medical reports and clinical notes, obtain on disc all EEGs, MRI and PETscan, write a letter from Brandon and I detailing Sophie's history, and include a picture of Sophie. I must FedEx this packet of information to them in which it will take two to three weeks to review. At this point, I will know whether or not they will accept Sophie into the program. They only accept four patients a month and their next opening is March 5th in which one spot is already filled. Talk about pressure. I feel like I am trying to enroll Sophie in an ivy league school when I am just trying to get some help for her. So we have made two trips to St. Louis Children's Hospital, numerous phone calls to Children's Hospital of Michigan and one trip to the local neuro's office. I have the majority of Sophie's records compiled and now I just need to write the letter and pick out a picture of Sophie.

Moving on... We went to Chicago on Thursday to get Sophie's DOCband (cranial molding helmet). Wow - it is so different than her old one. She did not seem to mind wearing the band. She wore it for about four hours and then we took it off to check for red spots. She had one on the right side of her forehead and one on the left side towards the back of her head. After about an hour, the red spot faded on her forehead but the other one was still kind of pink. We left the band off until about 9pm that night. She woke up several times in the middle of the night and finally at 4am we took the band off. There was no red spot on her forehead but I did not check the back of her head. Then when she woke up again at 7:15am, I checked her entire head and noticed she still had a pinkish spot on the left side of her head. So, I left the band off until 9am. We had another appointment at 10:45am on Friday to check to make sure the band was fitting properly. When we arrived at her appointment her forehead was fine but the left side of her head was still pretty pink. So, they shaved a little off the inside of her band that was rubbing the left side of her head and told us to keep it off for an hour. Then Sophie and I headed to the airport. I checked for red spots a few more times and then she wore the band to bed that night. Well, when we took the band off Saturday morning, the spot of her left side of her head was really red and there was actually a bump there. We left the helmet off for the rest of the weekend. I spoke with Cranial Tech this morning (as the spot is still pink but no more bump) and we are going to give it another day before we have to head back to Chicago. Oh, also she woke up with some crazy rash on her cheeks Saturday morning but it looks a lot better today.

Once again, moving on... We had Sophie's IFSP meeting today. That is where all her therapist and service coordinator come together to discuss services and goals for Sophie for the next 6 months. When we had her initial meeting six months ago, it was very exciting talking about Sophie's goals and where we would like to see Sophie in six months. It was exciting to know Sophie was going to start getting therapy and we would hopefully see some improvement. Well, we have seen improvement in the last six months but just not enough (which has nothing to do with the program - the program has been great). It was somewhat depressing to talk about where I would like to see Sophie in the next six months. It was a list of things that most 15 month olds are already able to do. I am trying to stay positive...

Thanks... Thank you Aunt Erica for once again opening your home to us on Thursday night. Thank you Aunt Erin, Uncle Joe, Colin and Nicholas for watching Sophie on Saturday and Sunday so Brandon and I could go to Washington DC for Brandon's work party. We had a great time and I enjoyed catching up with some people I have not seen in awhile.

The best for last... When Brandon went to get Sophie out of her crib from her morning nap, she was STANDING!!! She had pulled herself to a full standing position!!! How very exciting!!! This is what keeps me going!!! Way to go Sophie - I am so proud of you my baby girl!!!

Developmental Update...

Sophie is now pushing herself up to a "stand". She gets in the high-kneel position and then holds on to something low to the ground. She then slides one foot forward and then the other so her legs are straight and her feet are on the ground but her butt is up in the air. She is trying so hard to stand but she does not have the strength. Sophie has been diagnosed with mild hypotonia. Though, she is getting stronger and is gaining more balance. She does not wobble as much when she is holding on to your hands in a standing position. If she sees something that she REALLY wants to get, she will even pick her feet up and try to walk when you are holding on to her. Her desire is there. That means so much that she has the desire to continue to develop and learn through everything that is going on inside her body. Between the seizures, brain abnormalities and various medications, she is still trying. I am so proud of my baby girl!!!

Medication Update...

Sophie is currently on 750mg of Depakote and 100mg of Zonegran. Our local neuro had us reduce the Zonegran from 150mg to 100mg due to Sophie had vomited four times within two weeks. He believed that the combination of the two drugs was too much for her system to handle. It makes me cry to think what these drugs are doing to her body and what they are NOT doing for her seizures. Nothing seems to be controlling her seizures. She has around 50 to 75 a day.

Clobazam...

We finally found a pharmacy that will ship Clobazam to the United States. Clobazam is not FDA approved. The last pharmacy I used for a non-FDA approved drug (Vigabatrin) did not carry Clobazam. Clobazam is considered a controlled-substance which makes it harder to obtain than Vigabatrin. So hopefully we will receive it in about a week.

More on Plagiocephaly...

As I posted before, we made a last minute trip to Chicago for an appointment with Cranial Technologies to determine if Sophie needed another cranial molding helmet for her plagiocephaly. The trip turned out to be a lot of fun. We turned a five hour drive to Chicago into a ten hour drive on purpose. We were in no hurry to get there since our appointment was not until the next day. We left at 8:00am to pick up Haley. Around 9:30am we stopped off to have breakfast. Then around 1:00pm we stopped at the Children's Discovery Museum in Normal, Illinois. We wanted to stop somewhere the girls could get out and play. Sophie and Haley both enjoyed the museum very much.

Oh, this feels neat. (Yes - we left Sophie in her PJs.)

Look at me cruising around.

Whee, can we go down that again?

Creating a masterpiece.

How do I get out of here?

After the museum, we had lunch at Cosi (one of my favorite restaurants when we lived in DC but this location was not as good - disappointing) then we continued our road trip. About an hour and a half later, we made one more stop for ice cream and then we made it to Erica's and Ricky's house (my sister and brother-in-law) around 6:00pm. This trip served many purposes (1) Sophie's orthotic appointment, (2) see Erica's and Ricky's new house (gorgeous house and beautifully decorated - I got some great ideas for my own house), and (3) take Haley to the American Girl Place (there are only 3 locations in the US - New York, Chicago and Los Angeles). We accomplished all three things and had a lot of fun doing so. Thank you Erica and Ricky for your hospitality - I need that yummy Mexican Lasagna recipe and Haley would like to adopt Sylvester.

Sophie all bundled up while we walked around downtown Chicago.

Fast forward a week. Sophie and I flew to Chicago to be casted for her DOCband (cranial molding helmet) last Friday. Everything went very smoothly (from flying to renting a car and driving to the appointment) until our return flight was delayed an hour and a half. We left our house at 10:00am and did not get home until 9:30pm. Even through the long day, Sophie lit up the minute she saw Brandon (he had been out of town since Tuesday morning). Her arms and legs were going everywhere and she had a huge smile on her face. Oh, how she loves her wonderful daddy so much. So, we will return to Chicago in two weeks to be fitted for the helmet and Sophie will have to wear it 23 hours a day. Hopefully, we will see some great correction with this helmet so we do not have to get a third one.

Christmas Pictures...

Here are a few Christmas pictures. Once I downloaded my pictures to the computer, I realized I did not take very many pictures. We all enjoyed the holidays very much. Brandon was able to take some real time off of work (meaning no conference calls or responding to e-mails all day long during his "time off"). This will be the last year that we have a real Christmas tree. We believe Sophie was allergic to the tree. She had a persistent runny nose for over 3 weeks. Several of Brandon's family members are also allergic to real Christmas trees so it must be hereditary.

Sophie is getting to be so long.
Haley has a hard time holding her for very long.

Thanks to the Ellis Family for Sophie's adorable Christmas pajamas.

Haley and Sophie - Christmas 2005

Long overdue update...

Sorry I haven't posted in so long. Things around here are so crazy that I literally think my head is going to explode trying to keep up with all of Sophie's appointments. Hmmm...where do I start. Well, let's go down the list:

Pediatrician - We went to the pediatrician today and Sophie still has an ear infection. We will be starting our 3rd round of antibiotics tomorrow. She also has a low grade fever and has lost 1 pound since our last visit 2 weeks ago. We are at the pediatrician's office at least every 2 weeks if not more.

Orthoticist - We went to get our 3rd opinion today on whether or not Sophie should continue wearing a cranial molding helmet to correct her plagiocephaly. Her original orthoticist said there was nothing else she could do to correct the asymmetry. I am in panic mode as her asymmetry is still considered moderate (we are just hoping for mild) and the time for correction is running out. We made a last minute trip to Chicago last week for a 2nd opinion. That would have been our last opinion if they were closer. I was very impressed at what they had to say and I am hopeful that if we went with their helmet that we would see more correction. The only problem is they are 5 hours away and appointments would be at least every 2 weeks. So we went to get another opinion by a local orthoticist but I was very unimpressed by her experience (about 2 years and around 5 cases a year). Unless, I can find a local orthoticist with more experience then we will start travelling to Chicago on a regular basis very soon.

Developmental Therapist - We found a new therapist that seems very promising. Our first appointment will be this Thursday. I am anxious to learn more ways to help Sophie. Sophie and I are both getting frustrated not being able to communicate with each other better. She does not understand one word I say to her. I have been correlating the words "baba" with her drink for 6 months now and she still has no idea what I am talking about. It is so hard trying to feed her. Sometimes she just refuses to eat and I am not sure if she is not hungry or doesn't like the food or is paranoid that I am trying to shove medicine in her mouth. You should see the way she turns her head and throws her arms around the second a spoon comes near her. Sometimes I have to hold her down and let her taste the food and then she will start eating. I about break down in tears at every meal.

Speech Therapist - We are working on coordinating a time so Sophie can be evaluated for speech therapy. Hopefully, she will qualify for therapy as we all know she is behind. It all just depends if they think it is too early right now.

Physical Therapist - We have an appointment tomorrow. It might be a little disappointing that she has not progressed much since the last visit. Sophie has been sick for the last 25 days and has been extremely clingy to me and not wanting to do much of anything. So it is to be expected that the progress will be slow due to the circumstances but disappointing as well. On a good note, she has the desire to progress. She wants to stand and walk so bad. She will occasionally push herself to a stand (if you can call it that - more like her hands are on something low and she pushes her butt in the air and her legs go out). She can hold that position for all of about a half of a second before she falls over.

Pediatric Neurologist - We spoke with Dr. Chugani regarding all the test results and Sophie's future. As far as the abnormalities in Sophie's brain, it is suggestive of cortical dysplasia. Cortical dysplasia is the result of something happening during the signaling in organization of cells in the brain during the 2nd trimester of pregnancy. The reason the MRI came back normal and the PET scan did not is because cortical dysplasia can only be seen at a microscopic level. We will most likely try Clobazam next and start weaning Depakote. I will be talking with our local pediatric neurologist tomorrow to confirm everything. Sophie's seizures are getting worse. At times, it seems she has a seizure about every 5 minutes when she is awake. (Thank you Grandma Debbie for coming over on such short notice so I could have an intelligible and uninterrupted conversation with Dr. Chugani).

I promise I will download some Christmas pictures soon. In the meantime, here are the pictures of Sophie and Haley from the portrait studio (type in Elaine Coleman for "Customer Name"). Oh, by the way, it was a complete disaster when we took Haley and Sophie to get their pictures taken with Santa so we did not get any. We enjoyed the holidays despite everything going on. Brandon was able to time some "real" time off work (meaning he was able to take days off without having to do a conference call) which was refreshing. It was wonderful to spend time with all of our family (especially all those who travelled from out of town) and friends. We are blessed to have such wonderful and supportive family and friends. Happy New Year to you all.