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.