Yes, I'm back after a much needed blog-break! I can't tell you how nice it was to hear from so many friends, family, and CP parents letting me know that you missed hearing updates on how Kaitlyn is doing. It's a new year, and the perfect time to get back out here in the blogosphere...
Since my last post in August, a lot has changed for Kaitlyn. I am happy to report that she is LOVING second grade! She hit the teacher jackpot this year, something we're all grateful for. Her teacher is one of those people who possesses the perfect trifecta of second grade teacher traits...she's energetic, dedicated, and fun. Kaitlyn also has a new aide this year. Luckily she is a really nice fit for Kaitlyn. Socially Kaitlyn has maintained a nice group of friends from years past, and has made a couple of really sweet new friends this year. She still loves reading, singing, and dancing. Overall, second grade has been a great experience so far.
Unfortunately the last few months for Kaitlyn physically have been incredibly difficult. As kids do, Kaitlyn has gone through a fast growth spurt in the last year. Unfortunately, this is not a good thing for her. To put it simply, her muscles don't have the ability to grow and stretch at the pace they need to in order to keep up with her bone growth. The results of this growth spurt are that Kaitlyn now has an additional diagnosis of scoliosis. Also, her right leg is now a full centimeter longer than her right. Her hips are still slipping out of their sockets, although a little less than in the past. The most problematic development is in Kaitlyn's gait. She is now having extreme difficulty walking independently. She is falling all the time, and the falls are resulting in all kinds of injuries. We are encouraging more use of her crutches and walker, but Kaitlyn's fierce determination to be independent means she has little interest in either of those. We are trying to get to the root cause of the change in her gait pattern, which has proven difficult.
In a nutshell, we are trying to sift through several different doctor's opinions as to what the cause of the problem is, and what the best treatment plan is. Here is the breakdown:
*Her physiatrist here at Tufts in Boston believes that tight hip adductor muscles are the problem, best treated by injections of either Botox or Phenol to relax those muscles, with muscle lengthening surgery being a possibility after that.
*Her orthopedist at Tufts believes that she is troubled by tight hip, hamstring, and heel cord muscles best treated by injections first, and surgery to lengthen the muscles second. He also is concerned about the bone development in her left leg, and mentioned the possibility of an osteotomy which is a painful and invasive bone surgery that I don't even want to think about at this point.
*Her neurosurgeon (who performed her SDR surgery in St. Louis) disagrees with both of those opinions. He firmly believes that muscle tightness is not the issue at all. Instead he sees the problem being that her muscles are too short, and her hips are extremely weak. He believes that injections are the absolute WRONG treatment, because that would just result in weakening the muscles, not lengthening them. He recommends muscle lengthening surgery as the best option.
So, to say that Chris and I are confused is a huge understatement! We have spent hours going through our questions with doctor after doctor. Kaitlyn has endured hours of hospital visits, x-rays, and exams. She has been getting stretched like crazy at home and at school, she is wearing leg braces every day, and casts at night. She has been really dedicated to doing her exercises too. We have been researching everything we can on our own. Yet still, we really aren't sure what is the best plan of action. The next step is to perform a diagnostic test on Kaitlyn that involves sedating her and giving her some fast-acting, short-lived injections in her hip muscles that will allow the doctors to see how her muscles react. This should give the doctors some indication of if long-term injections would be beneficial, or if surgery is a better option. Also, we are going to the CP Clinic at Children's Hospital in Boston to get their opinions. Hopefully after all of that we'll feel ready to make a decision as to how to help Kaitlyn.
Although this is nothing new to us, having the responsibility of making such important decisions that will effect the rest of Kaitlyn's life is just so daunting. She is just the sweetest, happiest, kindest little person, and we just want to do everything we can to give her the best possible outcome. However, we know that if we choose the wrong plan, the damage could be irreparable. So scary.
So, if any of you have some words of wisdom you'd like to impart on me, I'd love to hear them! Otherwise, please keep your fingers crossed that 2012 will be a better year for Kaitlyn physically, and that she maintains her cheerful spirit and positive attitude with whatever comes her way this year!
Here are a couple of pictures of the kids - they sure have grown since my last post over the summer!
Happy New Year Everyone!
Since my last post in August, a lot has changed for Kaitlyn. I am happy to report that she is LOVING second grade! She hit the teacher jackpot this year, something we're all grateful for. Her teacher is one of those people who possesses the perfect trifecta of second grade teacher traits...she's energetic, dedicated, and fun. Kaitlyn also has a new aide this year. Luckily she is a really nice fit for Kaitlyn. Socially Kaitlyn has maintained a nice group of friends from years past, and has made a couple of really sweet new friends this year. She still loves reading, singing, and dancing. Overall, second grade has been a great experience so far.
Unfortunately the last few months for Kaitlyn physically have been incredibly difficult. As kids do, Kaitlyn has gone through a fast growth spurt in the last year. Unfortunately, this is not a good thing for her. To put it simply, her muscles don't have the ability to grow and stretch at the pace they need to in order to keep up with her bone growth. The results of this growth spurt are that Kaitlyn now has an additional diagnosis of scoliosis. Also, her right leg is now a full centimeter longer than her right. Her hips are still slipping out of their sockets, although a little less than in the past. The most problematic development is in Kaitlyn's gait. She is now having extreme difficulty walking independently. She is falling all the time, and the falls are resulting in all kinds of injuries. We are encouraging more use of her crutches and walker, but Kaitlyn's fierce determination to be independent means she has little interest in either of those. We are trying to get to the root cause of the change in her gait pattern, which has proven difficult.
In a nutshell, we are trying to sift through several different doctor's opinions as to what the cause of the problem is, and what the best treatment plan is. Here is the breakdown:
*Her physiatrist here at Tufts in Boston believes that tight hip adductor muscles are the problem, best treated by injections of either Botox or Phenol to relax those muscles, with muscle lengthening surgery being a possibility after that.
*Her orthopedist at Tufts believes that she is troubled by tight hip, hamstring, and heel cord muscles best treated by injections first, and surgery to lengthen the muscles second. He also is concerned about the bone development in her left leg, and mentioned the possibility of an osteotomy which is a painful and invasive bone surgery that I don't even want to think about at this point.
*Her neurosurgeon (who performed her SDR surgery in St. Louis) disagrees with both of those opinions. He firmly believes that muscle tightness is not the issue at all. Instead he sees the problem being that her muscles are too short, and her hips are extremely weak. He believes that injections are the absolute WRONG treatment, because that would just result in weakening the muscles, not lengthening them. He recommends muscle lengthening surgery as the best option.
So, to say that Chris and I are confused is a huge understatement! We have spent hours going through our questions with doctor after doctor. Kaitlyn has endured hours of hospital visits, x-rays, and exams. She has been getting stretched like crazy at home and at school, she is wearing leg braces every day, and casts at night. She has been really dedicated to doing her exercises too. We have been researching everything we can on our own. Yet still, we really aren't sure what is the best plan of action. The next step is to perform a diagnostic test on Kaitlyn that involves sedating her and giving her some fast-acting, short-lived injections in her hip muscles that will allow the doctors to see how her muscles react. This should give the doctors some indication of if long-term injections would be beneficial, or if surgery is a better option. Also, we are going to the CP Clinic at Children's Hospital in Boston to get their opinions. Hopefully after all of that we'll feel ready to make a decision as to how to help Kaitlyn.
Although this is nothing new to us, having the responsibility of making such important decisions that will effect the rest of Kaitlyn's life is just so daunting. She is just the sweetest, happiest, kindest little person, and we just want to do everything we can to give her the best possible outcome. However, we know that if we choose the wrong plan, the damage could be irreparable. So scary.
So, if any of you have some words of wisdom you'd like to impart on me, I'd love to hear them! Otherwise, please keep your fingers crossed that 2012 will be a better year for Kaitlyn physically, and that she maintains her cheerful spirit and positive attitude with whatever comes her way this year!
Here are a couple of pictures of the kids - they sure have grown since my last post over the summer!
Happy New Year Everyone!
Little builder...
Connor's Kindergarten Picture...
Kaitlyn's 2nd Grade Picture...
Antlers...
Making Christmas cards...
Whipping up a treat for the family bake-off...
Happy New Year! I am SO happy to see you back! I think you of you often and wonder how Kaitlyn is doing. I'm glad she's having a great year in second grade but so sorry to hear of the physical struggles! Malayna is being watched for scoliosis as well and I can only imagine how difficult this is for all of you! But you are wonderful parents and Kaitlyn has always been amazingly strong so I know together you will figure it out and make the right choices for her. Please keep us posted along the way. Here's to a healthy and happy 2012!
ReplyDeleteGlad to see you back too! I have been hoping I would see you on here again. I very much missed hearing about Kaitlyn and Connor. I hate to hear about the physical challenges that you are having, but I can empathize just a bit because we are going through some similar issues with Emma's hips. Emma's right hip is subluxed and shorter that her left leg. It has made for many challenges and has significantly limited her walker time. I can also understand the anguish of trying to make the best decisions and wading through anxiety inducing information. I will certainly put Kaitlyn and you in my prayers. I will pray that you get the clarity necessary for the best decisions and for Kaitlyn continued physical progress.
ReplyDeleteOn another lighter note, your children just keep getting more gorgeous with time.
Happy New Year!!!