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.
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.
3 comments:
The girl's pictures turned out absolutely beautiful!!!
I can't imagine when you find any time to blog at all with the schedule you and Sophie keep!! And now add trips every couple weeks to Chicago....I'd have to put post it notes on the bathroom mirror reminding me to comb my hair and brush my teeth. And then I'd have to hope that I didn't start my day before the sun came up and I read the notes.
Hope the medication changes bring our Sophie (and you) some relief.
We sure enjoyed visiting with all of you over the holidays. I pray 2007 brings even greater milestones than we can imagine for Sophie.
Lots of love,
Barb
Elaine,
If you and Brandon should choose to use the doctor in Chicago, you know that my home is always open for your stay. We have everything you could need for Sophie as I haven't gotten rid of any of Charlie's baby stuff. Let me know if you need a place to stay! We'd love to have you visit and help out!
Connie :-)
Elaine,
My grandson (Charlie) also has plagiocephaly my daoughter is taking him to the University of Missouri Columbia Childrens Hospital. His doctor there is very knowledgable and kind as well has what we call the helmet lady. They do their helmets thru Hanger a national company and we have had good success so far. He has been in the helmet about 8 weeks. This would be a closer option for you if they can help. We bring Charlie to Cardinal Glennon about every 9 to 12 weeks for heart issues that will lead to open heart surgery some day. Hope this helps.
Marsha Borgmeyer
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