Well folks, we made it to Durham and back...took a couple of days to recover haha. So here is the lowdown:
Neurology: Dr. Grant saw nothing wrong and said that from his POV everything looked great and we have been cleared for the year. The next appointment will be Feburary 2012.
Urology: Dr. Weiner was excited that Brie is potty training. He said he wants to do another Urodynamic test to see if the results are any different from the first one. He also said the self cathing would be a last resort for Brie. There are some medicines he wants to try and a couple of others things first. He said right now because of her developmental delays there really isnt a rush because she is just catching up with 4 years old on a development level.
Ultrasound: All of the ultrasounds came back good...bladder looked good, healthy, and normal. Kidneys showed they were functioning normal, are healthy and there is no sign of reflux.
Orthopedics: This was the big appointment this time. First off, she has a new doctor. His name is Dr. Lark and he seems to be pretty good. Because her previous doctor left we started over with a clean slate. We did new xrays and amazingly enough, the new length difference between her legs is mere centimeters. Dr. L seems to think that because Brie has such a severe club foot that the reason she tilts is because of that and not her pelvic bone. So what he has recommended we do is start with the small things first. So on March 8th, we are going to have her club foot fixed. We will take her to the Ambulatory Department and she will have a day surgery to correct it. The doctor will make an incision starting halfway down her shin and around her foot, will relax all of the muscles, fix her tendon, and then stitch it up. He said it isnt a very long surgery and we can take her home that day. She will be in a cast for three weeks like if you broke your leg or ankle and then when the cast comes off, she will have to wear a leg brace for 6 months, maybe longer. Dr. L said if that fixes most of the problems then we will probably be done with ortho for awhile and if it doesn't we work on one problem at a time. He doesn't see the need right now for a major complicated surgery if Brie doesnt need it right this second.
Pediatrician: She had four vials of blood drawn, all of that came back good. Brie is 3ft 3 inches tall and weighs 37 lbs. My little Thumbelina! haha
And that's it folks....our 17 hour trip in a nutshell.
Saturday, February 26, 2011
Tuesday, February 22, 2011
I have decided that for my first blog I would tell you about my daughter Keleigh (Key-Lee) or as we call her Brie. She is four years old and started school this year. Like most kids she is outgoing, playful, moody, a Diva in training, and as her teacher says "the hostess with the mostest". Brie is alike in every way except for one major difference, she was born with Spina Bifida.
I found out I was pregnant on October 10th, 2005. Of course we were excited but even more so because I was told I wouldn't be able to have any more children after my son was born in 1999. So Brie was a miracle from the get go. However, the pregnancy was troubled from the start and I almost miscarried several times. I spent the first 13 weeks of my pregnancy on bedrest. Things leveled off by the start of my 2nd trimester and I thought we were over the worst of it. I was wrong.
On Feburary 13th, 2006 we went to the doctor to have an ultrasound. I was close to 20 weeks and we were anxious to find out if we were having a boy or a girl. My doctor started the sonogram and happily told us that we were having a girl. Brie didn't like being pushed on and proceeded to rollover with her back facing us. All of us laughed and then the doctor's expression changed. He spent the next 45 minutes carefully scanning every inch of my belly, pushing and prodding Brie to move around the whole time. He never said another word to us even after I asked if there was something wrong. He looked at me strangely then left the room. The nurse smiled and told me to get dressed and that we would meet in his office. By this point I knew something was terribly wrong, call it mother's instinct if you want. We walked into the office and not only was my doctor there but several other doctors as well. Over the next hour and through many tears we were told that Brie had Lypomyelomengiocle or in layman's terms Spina Bifida. They kept telling us that we were one of the lucky ones who found out early and on a ultrasound to boot, because apparently that is really rare. It was at this point the one of the doctor's handed me a paper. It was a list of abortion clinics in our state and ones out of state who would perform medically neccesary 2nd trimester abortions. I started to cry and told the doctors that an abortion wasn't an option for us, we would deal with it somehow, someway. The following week we had to meet with a geneticist who did a bunch of tests and from that point forward, I had to go to a specialist weekly two hours from where we live.
As my pregnancy continued I started having more and more problems. By the end of my fifth month I was on bedrest until my due date and went into early labor twice in the month of March. By the beginning of June my doctors were concerned I wouldn't make my due date in July and decided to schedule a c-section for the week of June 20th. I would be 38 weeks by then and Brie would be fine. However, at my checkup on June 8th, I was starting to dilate and over the weekend started having contractions. When I went to the doctor on Monday, June 12th, they bumped the date up to June 15th. I was three days into my 37th week when Brie was born on Wednesday, June 14th. She weighed 4 lbs 9 ozs and was 17" long. I never got to hold her that day, they rushed her into the NICU unit immediately after birth and it was lunchtime the next day before I was finally allowed to see her. That was when I was informed they were med-vacing her to Duke University and I was being released the next morning. Exactly 36 hours after my c-section, I was heading one way and my baby was going the other.
The doctors at Duke ran several tests over a period of four days and finally after months of worrying about the unknown, we had a diagnosis. Brie was born with a tethered spine and her nerve endings were "raw" which means that even the slightest touch would cause her pain. The doctors told us she would never crawl, never walk and would be wheelchair bound, that she would have seizures, and every other kind of horror you can imagine. The worst part about it was the pain. She was so small that they couldn't give her anything like you would a normal size baby. Brie weighed four pounds even the day we brought her home. We all worried ourselves sick over everything from bathing, feeding, changing, dressing, even how to hold her and love on her. Brie cried as soon something touched her skin. The only time she was at peace was when she was asleep and no one was holding her or soaking in her baby bathtub. However, despite the pain she felt at our touch, Brie was a snuggler. Brie and I spent many nights crying together as we rocked snuggled up together.
Finally in October 2006 when Brie was four months old her doctors at Duke University decided that she weighed enough to have surgery. She had to be over ten lbs and on the day of her surgery she weighed 11 lbs even. During a four and a half hour surgery, her neurosurgeon basically snipped the part of her spine that was attached to itself and repaired some of the damaged nerves. After surgery the doctors were concerned about spinal fluid leaking so she had to lay on her stomach and spent the first two days in the NICU Surgical Unit heavily medicated so she would be still. On the third day, they moved her to the regular Peds Surgical Floor. When we arrived that morning something incredibly special happened. Brie was laying in her bed on her tummy listening to cartoons but she was, for the first time, holding her head up by herself. That alone made our day but then it happened. I walked over to Brie and called her name. Brie turned, looked at me, and for the very first time in her short little four month life, she smiled. Up until this point, because she was in so much pain all the time, she had never smiled before and that morning my baby smiled at me. It was the prettiest smile I ever seen in my life. Of course, my first instinct was to scoop her up but we weren't allowed to hold her yet so we could only kiss and hold her hands. Brie spent a total of 18 days in the hospital, 14 of those laying on her stomach.
Once we brought her home, Brie continued to surprise us. One month to the day of her surgery, she sat up on her own. At her three month checkup in January she crawled into her neurosurgeon's office and by her birthday checkup, she walked in. My babygirl who was supposed to be in a wheelchair walked into his office and waved hello. Her doctor was even amazed at her progress and has told us repeatedly that she shouldn't be doing what she does everyday.
After Brie was healed from surgery, her other doctors stepped in. At this point we were prepared for almost anything and weren't surprised at the results. Her urologist performed several tests and determined that she would never be able to potty train. The children's education specialist told us that Brie had several developmental delays and was really behind on speech, gross motor skills, fine motor skills, and they thought that she might even be slightly autistic. Brie also has anxiety and a low tolerance to noise, crowds, new places, etc. and suffered from sensory overload really bad. To this day, we have a hard time singing Happy Birthday to her because she cries. But the most concerning thing came from orthopedics.
Brie's legs are in bad shape. She was born without a piece of her pelvic bone and it has caused her whole body to tilt to one side, which effects most of her organs. She also has one leg that is shorter than the other, has a severe club foot and has had a braces and casts since she was 9 months old. She also has no feeling in her feet or the lower part of her legs. When I say no feeling, I mean no feeling. Two years ago, she cut the bottom of her foot all the way down to the bone on some glass. I didn't know she had even cut her foot until she ran by me, laughing I might add, and there was blood literally pouring out of her foot. It took 10 heavy duty stitches to close it and she laughed,colored, and ate cookies through the whole thing. They didn't even have to numb the area. Needless to say, she walks around with socks and shoes at all times. Not because we're careless, but to protect her.
In order to correct the problems, Brie will have to have major reconstructive surgery. What this will entail is the following: the doctors will put in a bone block to replace the missing bone and using pins, they will rebuild her pelvic bone. Then they will turn her knee and shin bone to the proper position before breaking the shin bone and attaching a bone extender to correct the length difference. Then Brie's ankle bone and joints will be turned to the proper position. Then she will have both of her Achilles' tendons snipped in both feet so they can be stretched to the proper elasticity your supposed to have. They will then be reattached to her leg tendon in both legs. Her right foot will also be rotated to the correct position and her ankle realigned. When the surgery is over, she will be in a full body cast from the nipples down called a Spica Cast. Its a heavy cast that makes the patient unable to move except for the arms. There is a bar in between the feet to keep the legs straight at all times, even while sleeping. Brie will have to be in this for four months and will be wheelchair bound. The only way we will be able to take her anywhere is by a special sling that attaches to the back of the seat in the car. It looks like a hammock only inside your car. However, if the surgery is successful then the doctors think that her organs, including her bladder and colon will be level and she will have a better chance of potty training. The downside to it is once we have it done, Brie will have to have the surgery every two to three years until she turns 21 and stops growing. Once the cast comes off, Brie will have another surgery to remove all of the pins and depending on how the bones heal, she may or may not have to go back into the cast for more healing time. Once the cast comes off for good, Brie will have to learn how to walk all over again and will have leg braces for a long time plus months of physical therapy.
Despite all of the orthopedic issues, Brie is thriving. I am happy to report that with the help of several therapists including a speech and occupational, she is going to Pre K and is right on track with the other kids. She will be entering Kindergarten in a regular classroom setting and not a special education class. Brie also has her very first imaginary friend who has sleepovers with her quite frequently. However, the biggest accomplishment by far happened just a short two weeks ago. Brie informed us that she wanted to start using the potty and I am very proud to say that Brie has been using it very successfully. We're at about 50/50 with it but I will take those odds considering the alternative.
We still have a long road ahead of us and I am sure there will be many more speed bumps but there are a few things I have learned along the way:
1. Never Say Something Is Impossible
2. Prayers Really Work
3. There Is Nothing That A Smile Can't Cure
4. Take Nothing For Granted
5. Celebrate The Small Victories (even if its just peeing in a potty)
I found out I was pregnant on October 10th, 2005. Of course we were excited but even more so because I was told I wouldn't be able to have any more children after my son was born in 1999. So Brie was a miracle from the get go. However, the pregnancy was troubled from the start and I almost miscarried several times. I spent the first 13 weeks of my pregnancy on bedrest. Things leveled off by the start of my 2nd trimester and I thought we were over the worst of it. I was wrong.
On Feburary 13th, 2006 we went to the doctor to have an ultrasound. I was close to 20 weeks and we were anxious to find out if we were having a boy or a girl. My doctor started the sonogram and happily told us that we were having a girl. Brie didn't like being pushed on and proceeded to rollover with her back facing us. All of us laughed and then the doctor's expression changed. He spent the next 45 minutes carefully scanning every inch of my belly, pushing and prodding Brie to move around the whole time. He never said another word to us even after I asked if there was something wrong. He looked at me strangely then left the room. The nurse smiled and told me to get dressed and that we would meet in his office. By this point I knew something was terribly wrong, call it mother's instinct if you want. We walked into the office and not only was my doctor there but several other doctors as well. Over the next hour and through many tears we were told that Brie had Lypomyelomengiocle or in layman's terms Spina Bifida. They kept telling us that we were one of the lucky ones who found out early and on a ultrasound to boot, because apparently that is really rare. It was at this point the one of the doctor's handed me a paper. It was a list of abortion clinics in our state and ones out of state who would perform medically neccesary 2nd trimester abortions. I started to cry and told the doctors that an abortion wasn't an option for us, we would deal with it somehow, someway. The following week we had to meet with a geneticist who did a bunch of tests and from that point forward, I had to go to a specialist weekly two hours from where we live.
As my pregnancy continued I started having more and more problems. By the end of my fifth month I was on bedrest until my due date and went into early labor twice in the month of March. By the beginning of June my doctors were concerned I wouldn't make my due date in July and decided to schedule a c-section for the week of June 20th. I would be 38 weeks by then and Brie would be fine. However, at my checkup on June 8th, I was starting to dilate and over the weekend started having contractions. When I went to the doctor on Monday, June 12th, they bumped the date up to June 15th. I was three days into my 37th week when Brie was born on Wednesday, June 14th. She weighed 4 lbs 9 ozs and was 17" long. I never got to hold her that day, they rushed her into the NICU unit immediately after birth and it was lunchtime the next day before I was finally allowed to see her. That was when I was informed they were med-vacing her to Duke University and I was being released the next morning. Exactly 36 hours after my c-section, I was heading one way and my baby was going the other.
The doctors at Duke ran several tests over a period of four days and finally after months of worrying about the unknown, we had a diagnosis. Brie was born with a tethered spine and her nerve endings were "raw" which means that even the slightest touch would cause her pain. The doctors told us she would never crawl, never walk and would be wheelchair bound, that she would have seizures, and every other kind of horror you can imagine. The worst part about it was the pain. She was so small that they couldn't give her anything like you would a normal size baby. Brie weighed four pounds even the day we brought her home. We all worried ourselves sick over everything from bathing, feeding, changing, dressing, even how to hold her and love on her. Brie cried as soon something touched her skin. The only time she was at peace was when she was asleep and no one was holding her or soaking in her baby bathtub. However, despite the pain she felt at our touch, Brie was a snuggler. Brie and I spent many nights crying together as we rocked snuggled up together.
Finally in October 2006 when Brie was four months old her doctors at Duke University decided that she weighed enough to have surgery. She had to be over ten lbs and on the day of her surgery she weighed 11 lbs even. During a four and a half hour surgery, her neurosurgeon basically snipped the part of her spine that was attached to itself and repaired some of the damaged nerves. After surgery the doctors were concerned about spinal fluid leaking so she had to lay on her stomach and spent the first two days in the NICU Surgical Unit heavily medicated so she would be still. On the third day, they moved her to the regular Peds Surgical Floor. When we arrived that morning something incredibly special happened. Brie was laying in her bed on her tummy listening to cartoons but she was, for the first time, holding her head up by herself. That alone made our day but then it happened. I walked over to Brie and called her name. Brie turned, looked at me, and for the very first time in her short little four month life, she smiled. Up until this point, because she was in so much pain all the time, she had never smiled before and that morning my baby smiled at me. It was the prettiest smile I ever seen in my life. Of course, my first instinct was to scoop her up but we weren't allowed to hold her yet so we could only kiss and hold her hands. Brie spent a total of 18 days in the hospital, 14 of those laying on her stomach.
Once we brought her home, Brie continued to surprise us. One month to the day of her surgery, she sat up on her own. At her three month checkup in January she crawled into her neurosurgeon's office and by her birthday checkup, she walked in. My babygirl who was supposed to be in a wheelchair walked into his office and waved hello. Her doctor was even amazed at her progress and has told us repeatedly that she shouldn't be doing what she does everyday.
After Brie was healed from surgery, her other doctors stepped in. At this point we were prepared for almost anything and weren't surprised at the results. Her urologist performed several tests and determined that she would never be able to potty train. The children's education specialist told us that Brie had several developmental delays and was really behind on speech, gross motor skills, fine motor skills, and they thought that she might even be slightly autistic. Brie also has anxiety and a low tolerance to noise, crowds, new places, etc. and suffered from sensory overload really bad. To this day, we have a hard time singing Happy Birthday to her because she cries. But the most concerning thing came from orthopedics.
Brie's legs are in bad shape. She was born without a piece of her pelvic bone and it has caused her whole body to tilt to one side, which effects most of her organs. She also has one leg that is shorter than the other, has a severe club foot and has had a braces and casts since she was 9 months old. She also has no feeling in her feet or the lower part of her legs. When I say no feeling, I mean no feeling. Two years ago, she cut the bottom of her foot all the way down to the bone on some glass. I didn't know she had even cut her foot until she ran by me, laughing I might add, and there was blood literally pouring out of her foot. It took 10 heavy duty stitches to close it and she laughed,colored, and ate cookies through the whole thing. They didn't even have to numb the area. Needless to say, she walks around with socks and shoes at all times. Not because we're careless, but to protect her.
In order to correct the problems, Brie will have to have major reconstructive surgery. What this will entail is the following: the doctors will put in a bone block to replace the missing bone and using pins, they will rebuild her pelvic bone. Then they will turn her knee and shin bone to the proper position before breaking the shin bone and attaching a bone extender to correct the length difference. Then Brie's ankle bone and joints will be turned to the proper position. Then she will have both of her Achilles' tendons snipped in both feet so they can be stretched to the proper elasticity your supposed to have. They will then be reattached to her leg tendon in both legs. Her right foot will also be rotated to the correct position and her ankle realigned. When the surgery is over, she will be in a full body cast from the nipples down called a Spica Cast. Its a heavy cast that makes the patient unable to move except for the arms. There is a bar in between the feet to keep the legs straight at all times, even while sleeping. Brie will have to be in this for four months and will be wheelchair bound. The only way we will be able to take her anywhere is by a special sling that attaches to the back of the seat in the car. It looks like a hammock only inside your car. However, if the surgery is successful then the doctors think that her organs, including her bladder and colon will be level and she will have a better chance of potty training. The downside to it is once we have it done, Brie will have to have the surgery every two to three years until she turns 21 and stops growing. Once the cast comes off, Brie will have another surgery to remove all of the pins and depending on how the bones heal, she may or may not have to go back into the cast for more healing time. Once the cast comes off for good, Brie will have to learn how to walk all over again and will have leg braces for a long time plus months of physical therapy.
Despite all of the orthopedic issues, Brie is thriving. I am happy to report that with the help of several therapists including a speech and occupational, she is going to Pre K and is right on track with the other kids. She will be entering Kindergarten in a regular classroom setting and not a special education class. Brie also has her very first imaginary friend who has sleepovers with her quite frequently. However, the biggest accomplishment by far happened just a short two weeks ago. Brie informed us that she wanted to start using the potty and I am very proud to say that Brie has been using it very successfully. We're at about 50/50 with it but I will take those odds considering the alternative.
We still have a long road ahead of us and I am sure there will be many more speed bumps but there are a few things I have learned along the way:
1. Never Say Something Is Impossible
2. Prayers Really Work
3. There Is Nothing That A Smile Can't Cure
4. Take Nothing For Granted
5. Celebrate The Small Victories (even if its just peeing in a potty)
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