Where have I been? So sorry. Anna is almost 4, just 3 weeks!
Life has been busy and stressful in the Kempton household lately and I think sitting down to write about it, was scaring me even more. But, in all fairness, this is a blog for Myanna and those who pray for her so I think it is only fair to share our news. Following up from the December MRI, we went to Johns Hopkins to see a Neurosurgeon. I don't think Chris nor I were very impressed with his assessment of situation and he had no clear plans for the future. When a doctor says, "if you want surgery, we can do surgery...if you don't, then we can wait", well that just isn't what I'm paying him for. So, next stop was Boston's Children's Hospital for a second opinion. I had read that they were number one in the country in Neuro surgery and I wanted to see someone who had seen this type of thing a million times...ok, at least thousands?? I found out, through a support group, that this Dr had been seen by a couple other families and they were very impressed with him. I was told that Myanna was in good hands.
We made the arrangements and off to Boston we went. It was 8 hours away, but it was a nice trip. We stayed in a hotel which Myanna just loves and then saw the doctor the next morning. He spent a lot of time with us, explaining what he saw in the MRI to us. (His computer wasn't working and so he was looking at the pictures for the first time right in front of us). He started by telling us things looked good, but quickly changed as he saw a few things that weren't even mentioned on the Radiology report from Inova Fairfax. He mentioned that Myanna's syrinx [Syringomyelia is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. The damage may result in pain, paralysis, weakness, and stiffness in the back, shoulders, and extremities. Syringomyelia may also cause a loss of the ability to feel extremes of hot or cold, especially in the hands. The disorder generally leads to a cape-like loss of pain and temperature sensation along the back and arms. Each patient experiences a different combination of symptoms. These symptoms typically vary depending on the extent and, often more critically, to the location of the syrinx within the spinal cord.] was idiopathic (Idiopathic is a medical term used to describe a condition with no known cause) and that at this point he was no concerned by it. He also mentioned that he saw no indication of Chiari malformation, [Chiari malformation is a congenital (i.e. present at birth) structural problem at the base of the skull that affects the brain and spinal cord.]
The next thing that caught his eye, and the most significant was a small area of fatty tissue on the filum, at the base of the spinal cord. This issue can cause tethering of the spinal cord, leading to further issues such as numbness and pain in legs as well as incontinence. He was unable to see tethering at this time. He said he was leaning towards surgery to remove the fatty tissue but wanted to consult with his neuro team and radiologist first. That thursday, he emailed me that they team felt yes, this was fatty tissue but they weren't convinced enough that surgery was needed at this time. They would like Myanna to undergo another test called a urodynamics study, (The urodynamics study is a test used to assess how well your child's bladder and urethral sphincter are doing their jobs of collecting, holding and releasing urine.) This will help the neuro surgeons determine if Myanna's nervous system is working properly in the case of her bladder. This test will be done on April 8th, and we are traveling back to Boston again for that.
Chris and I felt very comfortable with Boston's Neuro department and realizing that special needs children literally come from all over to go there is refreshing. We need someone who can hopefully make this as pain free for my baby girl and anxiety free as possible. The neuro surgeon has placed Myanna in their spina bifida program now so she will be followed by a multitude of physicians. The results of this test will decide if we are heading for spine surgery, or waiting and watching for any changes to occur through more MRI's and urodynamics tests performed in the future.
Otherwise, Myanna is doing really great! She has started gymnastics and crazy, some how, we have private lessons! It's just awesome because she is learning rules and how to do things one on one right now. Her talking is really coming along, there are only a few times I am questioning what she is trying to tell me. She is about 291/2 pounds right now, and has moved a few more foods into her schedule. Macaroni and cheese is now about a once a week item for her. She is also starting to enjoy pizza, and not just the crust. I have been able to make pizza at home with very little sauce and she eats a whole slice! Another accompishment in the foods, is after 2 years of eating more and more of the s'mores pop tart, she has eaten the entire thing, marshmallow and chocolate and all! She has to have a wet paper towel next to her to wipe her fingers after each piece she picks up, but she is enjoying all 200 calories of it! For lunch most days she eats either brown sugar cinnamon toast or what she calls mommy's toast, which is a thin wheat toast. I know we still have a long way to go, but she is trying and branching out and we are so proud of her. We are now sleeping in Myanna's bed and room, yes we...Mommy is sleeping with her currently until she can sleep alone. Her best friend, Pixie is getting very big and they are very cute together. I am thinking she is close to 50 pounds about now. We have recently noticed a sense of style, quite bold but lots of fun with Myanna. She has been requesting pony tails, barrettes, head bands and hats for school. She is also quite particular about her clothing now. This should be an interesting summer. We are very excited about her flash of fashion.
We have a lot of appointments coming up as she is approaching 4 years old. Her regular check up, the developmental pediatrician, ophthalmologist, and the school IEP as well. Soon I will be posting all about her big birthday! Four years has gone pretty fast, and for the first time I am very excited about her party. She has requested her friends from school and so we are having the party at a playground where they can all run around. Of course it is a Frozen party, which is all I have heard about for 6 months, so I better deliver.
We made the arrangements and off to Boston we went. It was 8 hours away, but it was a nice trip. We stayed in a hotel which Myanna just loves and then saw the doctor the next morning. He spent a lot of time with us, explaining what he saw in the MRI to us. (His computer wasn't working and so he was looking at the pictures for the first time right in front of us). He started by telling us things looked good, but quickly changed as he saw a few things that weren't even mentioned on the Radiology report from Inova Fairfax. He mentioned that Myanna's syrinx [Syringomyelia is a generic term referring to a disorder in which a cyst or cavity forms within the spinal cord. This cyst, called a syrinx, can expand and elongate over time, destroying the spinal cord. The damage may result in pain, paralysis, weakness, and stiffness in the back, shoulders, and extremities. Syringomyelia may also cause a loss of the ability to feel extremes of hot or cold, especially in the hands. The disorder generally leads to a cape-like loss of pain and temperature sensation along the back and arms. Each patient experiences a different combination of symptoms. These symptoms typically vary depending on the extent and, often more critically, to the location of the syrinx within the spinal cord.] was idiopathic (Idiopathic is a medical term used to describe a condition with no known cause) and that at this point he was no concerned by it. He also mentioned that he saw no indication of Chiari malformation, [Chiari malformation is a congenital (i.e. present at birth) structural problem at the base of the skull that affects the brain and spinal cord.]
The next thing that caught his eye, and the most significant was a small area of fatty tissue on the filum, at the base of the spinal cord. This issue can cause tethering of the spinal cord, leading to further issues such as numbness and pain in legs as well as incontinence. He was unable to see tethering at this time. He said he was leaning towards surgery to remove the fatty tissue but wanted to consult with his neuro team and radiologist first. That thursday, he emailed me that they team felt yes, this was fatty tissue but they weren't convinced enough that surgery was needed at this time. They would like Myanna to undergo another test called a urodynamics study, (The urodynamics study is a test used to assess how well your child's bladder and urethral sphincter are doing their jobs of collecting, holding and releasing urine.) This will help the neuro surgeons determine if Myanna's nervous system is working properly in the case of her bladder. This test will be done on April 8th, and we are traveling back to Boston again for that.
Chris and I felt very comfortable with Boston's Neuro department and realizing that special needs children literally come from all over to go there is refreshing. We need someone who can hopefully make this as pain free for my baby girl and anxiety free as possible. The neuro surgeon has placed Myanna in their spina bifida program now so she will be followed by a multitude of physicians. The results of this test will decide if we are heading for spine surgery, or waiting and watching for any changes to occur through more MRI's and urodynamics tests performed in the future.
Otherwise, Myanna is doing really great! She has started gymnastics and crazy, some how, we have private lessons! It's just awesome because she is learning rules and how to do things one on one right now. Her talking is really coming along, there are only a few times I am questioning what she is trying to tell me. She is about 291/2 pounds right now, and has moved a few more foods into her schedule. Macaroni and cheese is now about a once a week item for her. She is also starting to enjoy pizza, and not just the crust. I have been able to make pizza at home with very little sauce and she eats a whole slice! Another accompishment in the foods, is after 2 years of eating more and more of the s'mores pop tart, she has eaten the entire thing, marshmallow and chocolate and all! She has to have a wet paper towel next to her to wipe her fingers after each piece she picks up, but she is enjoying all 200 calories of it! For lunch most days she eats either brown sugar cinnamon toast or what she calls mommy's toast, which is a thin wheat toast. I know we still have a long way to go, but she is trying and branching out and we are so proud of her. We are now sleeping in Myanna's bed and room, yes we...Mommy is sleeping with her currently until she can sleep alone. Her best friend, Pixie is getting very big and they are very cute together. I am thinking she is close to 50 pounds about now. We have recently noticed a sense of style, quite bold but lots of fun with Myanna. She has been requesting pony tails, barrettes, head bands and hats for school. She is also quite particular about her clothing now. This should be an interesting summer. We are very excited about her flash of fashion.
We have a lot of appointments coming up as she is approaching 4 years old. Her regular check up, the developmental pediatrician, ophthalmologist, and the school IEP as well. Soon I will be posting all about her big birthday! Four years has gone pretty fast, and for the first time I am very excited about her party. She has requested her friends from school and so we are having the party at a playground where they can all run around. Of course it is a Frozen party, which is all I have heard about for 6 months, so I better deliver.
play doh with daddy
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first horse lessons
Yes! those are pony tails
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buddies watching daddy work on the car
My crazy dress up girl
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