Hi Everyone! We have moved our blog to Caring Bridge. You can find the updates on Jessica at www.caringbridge.org/visit/jessicareid1
Hope you'll join us there.
Stephanie
Friday, March 26, 2010
Sunday, March 21, 2010
Just to let everyone know what it going on. A little background information.
For those of you who are aware of the goings on in our household these days, you may want to skip this post. I wanted to included the history that has led us to this point for those friends and family members that we do not talk to on a regular basis.
In October 2008 Jessica was diagnosed with Myasthenia gravis. MG is an autoimmune disorder that causes the body to produce antibodies against the acetylcholine receptors. Basically, it prevents her muscles from getting the message from her nervous system to move her muscles. We had long known that there was something that was causing her to have difficulty walking and have had her to various doctors over the years. The MG was finally diagnosed by a Neurologist at UNC Children's Clinic when Jessica was referred there by her pediatrician because she had developed a droopy eyelid.
Dr. Tennison, diagnosed her right away and started her on oral medication to help free up her acetylcholine receptors. We noticed immediate improvements in her gait and mobility. Additional diagnostic testing needed to be done to ensure that we were on the right treatment path for Jessica. In April 2009, Jessica had underwent an EMG to allow for definitive diagnosis of the MG so that we could move ahead with her treatment. During visits with Dr. Tennison, he mentioned that we may want to consider having Jessica's thymus removed. He stated that by removing the thymus she could possibly go into remission and not need to take the 4 doses a day medication that she was currently taking. The results from the EMG found that she also had CMT (Charcot Marie Tooth), a hereditary degenerative neuromuscular disorder. (The same one that Ty has.) Jessica was then referred to the MDA clinic to see Dr. Weig, a pediatric neuromuscular specialist, at UNC. He agreed with Dr. Tennison that Jessica should have a thymectomy and we were shooting for summer break to have the procedure.
As the months passed Jessica continued to do well on her medication. However, in the fall of 2009, Jessica began to experience increasing pain in her hip and leg. We associated it with the two disorders that she was being treated for and had her try stretching exercises and pilates. She seemed to get some relief from the pain and we did not think too much about it.
In January 2010, while in for a check-up and surgery planning with Dr. Weig, we mentioned the pain that Jessica had been experiencing. He felt that the type of pain that she was experiencing did not fit with her current diagnoses. He examined her and sent her for a set of x-rays. Dr. Weig called us the next morning to let us know that Jessica did not have a left hip joint and he wanted her to be seen right away in the pediatric orthopaedic clinic at UNC. He stated that it would be necessary to put all plans of further treatment for her MG on hold until this was taken care of.
I panicked, of course. All I could think was how am I going to tell her that there is something else wrong! She had been a trooper up to this point. She didn't like going to UNC for checkups or taking her medicine, but she did it all the same. I was afraid that this would be the last straw for her and it would crush her spirits. I called Ty right away and filled him in. That evening, we talked to Jessica and told her that she needed to see the orthopaedic doctor at UNC because they wanted to look at her hip and watch her walk. She asked a ton of questions, as always. She has always been too smart for her own good. In the end we convinced her that it was just like a check-up visit and she settled down.
The next afternoon we went to see Dr. Henderson, one of the pediatric ortho doctors at UNC. He had studied her x-rays and her history and had a recommendation and plan in place. He told us that Jessica would need to have a hip reconstruction as soon as possible. It would take 8-12 weeks of healing before she could begin physical therapy.
Jessica was hysterical and Ty and I were feeling quite defeated. We scheduled the surgery to take place on April 8th. The girls had received a cruise for Christmas to be taken over spring break and Jessica wanted to wait until after the cruise to have the surgery. We of course, felt that she deserved to have that much fun. Dr. Henderson, said not to limit her physical activity up to the surgery. He stated that if the fun outweighed the pain then let her do it!
Jessica worked hard to enjoy the rest of her winter; skiing, playing in the snow and roller skating. With the help of pain medication and some anti-anxiety medication she has been doing great.
Well that brings everyone up to date. We leave for our cruise on Saturday, March 27 and are planning to have a blast. Jessica and Kendall are going to remain in Florida with Ty's parents when we return from the cruise to enjoy their spring break while Ty and I go back to work to wrap up some last minute things before taking some time off. Jessica, Kendall and Nana will fly back to NC on April 7th and Jessica will be admitted to UNC Children's Hospital on Thursday, April 8.
According to her doctor, Jessica will be in the hospital 3-4 nights following the surgery then will come home to recover. She is going to be in a body cast from her chest to her toes on the left side and to her knee on the right side. They will put a bar between her two casted legs to keep them immobile. Needless to say she is in for a long, difficult recovery period.
We are converting the living room into a room for her and the hospital bed will be delivered the day before she goes in for surgery. She will more than likely miss the rest of the school year, but fortunately, her classroom teacher will be doing her home bound teaching. I am hoping to be able to keep her busy and prevent her from getting bored. I will be at home with her until the end of April, then Ty will take 3 weeks. After that we are planning for my mom and Ty's mom to take a week or so to get us through the end of the school year. School is out June 10 so I will be able to be home with her for the summer.
I will keep everyone posted about what is going on and post some pics along the way. If you are in the area, please feel free to stop in. Jessica is going to need to see some friendly, encouraging faces to help her along this process.
Keep us in your prayers and I will keep everyone posted.
Love,
Steph
In October 2008 Jessica was diagnosed with Myasthenia gravis. MG is an autoimmune disorder that causes the body to produce antibodies against the acetylcholine receptors. Basically, it prevents her muscles from getting the message from her nervous system to move her muscles. We had long known that there was something that was causing her to have difficulty walking and have had her to various doctors over the years. The MG was finally diagnosed by a Neurologist at UNC Children's Clinic when Jessica was referred there by her pediatrician because she had developed a droopy eyelid.
Dr. Tennison, diagnosed her right away and started her on oral medication to help free up her acetylcholine receptors. We noticed immediate improvements in her gait and mobility. Additional diagnostic testing needed to be done to ensure that we were on the right treatment path for Jessica. In April 2009, Jessica had underwent an EMG to allow for definitive diagnosis of the MG so that we could move ahead with her treatment. During visits with Dr. Tennison, he mentioned that we may want to consider having Jessica's thymus removed. He stated that by removing the thymus she could possibly go into remission and not need to take the 4 doses a day medication that she was currently taking. The results from the EMG found that she also had CMT (Charcot Marie Tooth), a hereditary degenerative neuromuscular disorder. (The same one that Ty has.) Jessica was then referred to the MDA clinic to see Dr. Weig, a pediatric neuromuscular specialist, at UNC. He agreed with Dr. Tennison that Jessica should have a thymectomy and we were shooting for summer break to have the procedure.
As the months passed Jessica continued to do well on her medication. However, in the fall of 2009, Jessica began to experience increasing pain in her hip and leg. We associated it with the two disorders that she was being treated for and had her try stretching exercises and pilates. She seemed to get some relief from the pain and we did not think too much about it.
In January 2010, while in for a check-up and surgery planning with Dr. Weig, we mentioned the pain that Jessica had been experiencing. He felt that the type of pain that she was experiencing did not fit with her current diagnoses. He examined her and sent her for a set of x-rays. Dr. Weig called us the next morning to let us know that Jessica did not have a left hip joint and he wanted her to be seen right away in the pediatric orthopaedic clinic at UNC. He stated that it would be necessary to put all plans of further treatment for her MG on hold until this was taken care of.
I panicked, of course. All I could think was how am I going to tell her that there is something else wrong! She had been a trooper up to this point. She didn't like going to UNC for checkups or taking her medicine, but she did it all the same. I was afraid that this would be the last straw for her and it would crush her spirits. I called Ty right away and filled him in. That evening, we talked to Jessica and told her that she needed to see the orthopaedic doctor at UNC because they wanted to look at her hip and watch her walk. She asked a ton of questions, as always. She has always been too smart for her own good. In the end we convinced her that it was just like a check-up visit and she settled down.
The next afternoon we went to see Dr. Henderson, one of the pediatric ortho doctors at UNC. He had studied her x-rays and her history and had a recommendation and plan in place. He told us that Jessica would need to have a hip reconstruction as soon as possible. It would take 8-12 weeks of healing before she could begin physical therapy.
Jessica was hysterical and Ty and I were feeling quite defeated. We scheduled the surgery to take place on April 8th. The girls had received a cruise for Christmas to be taken over spring break and Jessica wanted to wait until after the cruise to have the surgery. We of course, felt that she deserved to have that much fun. Dr. Henderson, said not to limit her physical activity up to the surgery. He stated that if the fun outweighed the pain then let her do it!
Jessica worked hard to enjoy the rest of her winter; skiing, playing in the snow and roller skating. With the help of pain medication and some anti-anxiety medication she has been doing great.
Well that brings everyone up to date. We leave for our cruise on Saturday, March 27 and are planning to have a blast. Jessica and Kendall are going to remain in Florida with Ty's parents when we return from the cruise to enjoy their spring break while Ty and I go back to work to wrap up some last minute things before taking some time off. Jessica, Kendall and Nana will fly back to NC on April 7th and Jessica will be admitted to UNC Children's Hospital on Thursday, April 8.
According to her doctor, Jessica will be in the hospital 3-4 nights following the surgery then will come home to recover. She is going to be in a body cast from her chest to her toes on the left side and to her knee on the right side. They will put a bar between her two casted legs to keep them immobile. Needless to say she is in for a long, difficult recovery period.
We are converting the living room into a room for her and the hospital bed will be delivered the day before she goes in for surgery. She will more than likely miss the rest of the school year, but fortunately, her classroom teacher will be doing her home bound teaching. I am hoping to be able to keep her busy and prevent her from getting bored. I will be at home with her until the end of April, then Ty will take 3 weeks. After that we are planning for my mom and Ty's mom to take a week or so to get us through the end of the school year. School is out June 10 so I will be able to be home with her for the summer.
I will keep everyone posted about what is going on and post some pics along the way. If you are in the area, please feel free to stop in. Jessica is going to need to see some friendly, encouraging faces to help her along this process.
Keep us in your prayers and I will keep everyone posted.
Love,
Steph
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