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!!!
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!!!
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