A couple of weeks ago we picked up Elle's new back brace. I am most certain that she would have rather we left it there at the clinic. She is not a fan and honestly, who would be.
The fact that it is not built for comfort aside, it really is a beautifully made brace. When I figure out how to post photos into this blog now that I am working with an iPad, I will. For now, you will just have to close your eyes and imagine it.
It was made especially for Elle by wrapping her like a mummy in liquid fiber glass soaked gauze. Once it dried, which was exceptionally fast, the mold was cut from her body. It was shipped to Boston where it would be fabricated into the hard brace she will wear daily.
We were able to choose a pattern for the brace to make it a bit more fun to wear. Naturally, we chose a butterfly design since Elle loves butterflies. If she could...she would and I know this.
Figuring out how to get the brace on Elle has been a challenge in itself. Keep in mind that elle is unable to stand unassisted and I only have 2 hands. Each day we figure out another creative way to get it on her. Fortunately, Elle is quite resilient and didn't let this stinky brace hinder her from crawling around the house. I think she is even a little faster now :-). I did notice that she refuses to sit up when wearing the brace. I felt it was too long but knew we would have to get the final word from the boss, Dr. Loveless. He confirmed what I suspected so we will have a few inches trimmed off the bottom so that she can sit up comfortably.
During our appointment with Dr. Loveless we spoke about what was to come for Elle. I knew there was more than what he had initially told me. Dr. Loveless is good about telling me things when he knows I can handle them. He is the only Dr. I would accept this from. If you knew him, you would understand. I was certainly feeling stronger during this second appointment and was ready to talk about this new journey we were about to embark on together.
The dirty truth, as he called it, is that Elle has Neuro-Muscular Scoliosis. Very different than Idiopathic Scoliosis ...the common type that kids gets, wear a brace for a few years and never have a problem again. Because Elle's nerves and muscles are too weak to hold the spine in place, it has started to curve to one side. With Neuro muscular scoliosis, the curve will not stop but will continue to worsen until one is unable to care for the child. At that point, the heart and lungs can be impacted.
Not allowing myself a weak moment, I asked him what could be done, if anything? "There is a way to correct it...I'll do a Spinal Fusion and it will not be able to continue along its natural history. Once the spine gets to a 50% curve well do the surgery." I started to feel sick in my stomach at the though of what he was saying. I knew I had to ask the next question, no matter how much I didn't want to hear it. "What percentage is she at now?" He hesitated...i think to read me and be sure I was really ready for his answer. "33" he said. And in that moment, the Dr. Loveless that I have come to know, love and trust filled in all the blanks. "Although it is a surgery, I do them all the time. It's very common and I know it is still a surgery to you. Lori, of all the problems that we could be faced with, this is the one we want...we can fix it. It's not hip, legs or feet. We're exactly where I want to be with it....ahead of the 50%. She'll wear the brace to buy us time for her to get bigger and we'll be back here in a couple of years discussing the surgery. In the meantime, you need to do what is realistic for you with this brace..." The conversation continued but thats the jest of it. Basically he was saying...help buy us time by having Elle wear the brace and leave the rest to me...trust me...I've got this.
Sunday, August 25, 2013
Thrown a Curve
As usual, it's been a while since I have posted anything and we have lots of updates. We'll start with the kid...since this IS her blog...
Elle turned 5 in February and has taken on a whole new little personality. She is still bossy as hell in her non-verbal way and I simply love it! She continues to be aware of what's going on around her and makes it her business to come out of her room to investigate the goings on in the living room...or any room that she may feel she is missing out on.
She has done well in school and continues to show us all that she is capable of learning more. Her therapists at school have taught her how to eat with a spoon. Outstanding! Now, lets be clear ...she is not yet scooping food herself, but they are working towards it. She is, however, able to take the fork or spoon from you, feel herself and then gently give the utensil back to you!! This is huge and almost unheard of amongst kids with Elle's diagnosis. As we say around here...diagnosis, schmiganosis...whatever!!
She does great in the gait trainer at school and walks the hallways like she owns them. She has been doing so well that at our annual Orthopedic appointment with Dr. Loveless, we were ready to talk about a surgery for her leg that would essentially properly align her leg that turns in so that when she walks she would walk straight versus taking a step and planting her foot down on the other foot, thus creating another challenge for her. Well...as usual, Elle had other plans for this appointment.
I took her down for X-rays and then we returned to the room, anxiously awaiting Dr. Loveless. I was.So excited for this appointment and what i thought it could mean for Elle. After our usual greetings of hugs and a few other things we got right down to business.
"So..talk to me about her back." he said. Now, I have know Dr. Loveless for years and know him well enough to know where this was going. Something was wrong with the X-ray and it wasn't going to be good news. I had been been here before with he hips. I could feel the emotion start at my feet and quickly begin to rush up my body until I simply couldn't hold it in. All i heard was "Scoliosis"....
I remember a few more things that he said after that but if it wasnt for David recapping the conversation and again telling me what he said i would still be in the dark. The worst part was that he didn't show us the X-ray...he knows me well enough to know that the visual of that would have been to much for me at that point. For my own sanity at the time, i knew better than to ask.
If you are reading this and don't know us you are probably thinking...well...geez..there are worse things out there than Scoliosis! Absolutely, there are. However...this was something that I thought we had beat. It is very common for kids with Lissencephally to develop severe cases of this muscular disorder but Elle hadn't. She is checked for it annually. Maybe i got a little to comfortable with where we were and with what our normal had become. Hearing that it had formed and progressed to a point that it needed attention hit me sideway. All of a sudden it was a reality check of things to come. I try my hardest to live in the moment when It come to Elle. Sure, I plan things for my life, I set goals for things that I want to achieve but with Elle...we take it day by day. I don't think of all the things that could go wrong. All the things that come with this horrible diagnosis. It is what it is and we will deal with things when they happen. I simply can not sit still and live in fear anticipating things hat may not even happen.
So what next...what else...a turtle shell!!! That's what we call her back brace. Although she doesn't have it yet, we will brace her during every waking hour and see what results. Elle is pretty resilient and i am will handle the whole thing better than I will.
Elle turned 5 in February and has taken on a whole new little personality. She is still bossy as hell in her non-verbal way and I simply love it! She continues to be aware of what's going on around her and makes it her business to come out of her room to investigate the goings on in the living room...or any room that she may feel she is missing out on.
She has done well in school and continues to show us all that she is capable of learning more. Her therapists at school have taught her how to eat with a spoon. Outstanding! Now, lets be clear ...she is not yet scooping food herself, but they are working towards it. She is, however, able to take the fork or spoon from you, feel herself and then gently give the utensil back to you!! This is huge and almost unheard of amongst kids with Elle's diagnosis. As we say around here...diagnosis, schmiganosis...whatever!!
She does great in the gait trainer at school and walks the hallways like she owns them. She has been doing so well that at our annual Orthopedic appointment with Dr. Loveless, we were ready to talk about a surgery for her leg that would essentially properly align her leg that turns in so that when she walks she would walk straight versus taking a step and planting her foot down on the other foot, thus creating another challenge for her. Well...as usual, Elle had other plans for this appointment.
I took her down for X-rays and then we returned to the room, anxiously awaiting Dr. Loveless. I was.So excited for this appointment and what i thought it could mean for Elle. After our usual greetings of hugs and a few other things we got right down to business.
"So..talk to me about her back." he said. Now, I have know Dr. Loveless for years and know him well enough to know where this was going. Something was wrong with the X-ray and it wasn't going to be good news. I had been been here before with he hips. I could feel the emotion start at my feet and quickly begin to rush up my body until I simply couldn't hold it in. All i heard was "Scoliosis"....
I remember a few more things that he said after that but if it wasnt for David recapping the conversation and again telling me what he said i would still be in the dark. The worst part was that he didn't show us the X-ray...he knows me well enough to know that the visual of that would have been to much for me at that point. For my own sanity at the time, i knew better than to ask.
If you are reading this and don't know us you are probably thinking...well...geez..there are worse things out there than Scoliosis! Absolutely, there are. However...this was something that I thought we had beat. It is very common for kids with Lissencephally to develop severe cases of this muscular disorder but Elle hadn't. She is checked for it annually. Maybe i got a little to comfortable with where we were and with what our normal had become. Hearing that it had formed and progressed to a point that it needed attention hit me sideway. All of a sudden it was a reality check of things to come. I try my hardest to live in the moment when It come to Elle. Sure, I plan things for my life, I set goals for things that I want to achieve but with Elle...we take it day by day. I don't think of all the things that could go wrong. All the things that come with this horrible diagnosis. It is what it is and we will deal with things when they happen. I simply can not sit still and live in fear anticipating things hat may not even happen.
So what next...what else...a turtle shell!!! That's what we call her back brace. Although she doesn't have it yet, we will brace her during every waking hour and see what results. Elle is pretty resilient and i am will handle the whole thing better than I will.
Sunday, July 14, 2013
Move Over Elle...
So, I primarily use this blog to update those of you that follow it, on the little person , but I have decided to take a page for myself. Yes, I asked Elle's permission and all she said was to "keep it short, Ma!". Now if you know Elle, you know full well that if she could talk that is exactly what she would say!!
7 weeks ago I made a commitment to myself to get fit and healthier. This is the same commitment Iattempted to make last year around this time but for whatever reason, and there were several, I just could not fully commit.
Jump to 7 weeks ago...I'm not exactly sure what changed in me but I made the commitment and am seeing the results I want!! That alone is enough motivation for me to keep going. When say I wanted to get fit and healthier I mean just that. I had my annual physical and everything was in check. Cholesterol was 110, BP was great, however, I had gained a couple of extra pounds here and there. I simply wasn't happy in my skin. I had decided to try eating Paleo 3 months ago and that went well. I followed a strict Paleo diet for the first 30 days and relaxed it to about 85% Paleo for the remaing time. I had a goal weight in mind but really wasn't sure how to get there. Although I noticed a dramatic difference in my energy levels from the Paleo diet, I only lost 4 lbs.
I knew the answer and it was cardio and weight training...but how. Enter Sam, Elle's nanny. Around the same time, Sam had made the same commitment to herself to get fit. She shared with me the program she was about to start. At first I was skeptical but when I looked it up and did a little research about the program it had my full and complete attention.
I'm excited to say that after 7 weeks of a full commitment to Jamie Easons LiveFit Training program
*I have lost 11 lbs of the nasty F word
* increased my muscle mass
*decreased my total body fat by 4%.
*Started to see a lot of definition in my arms, shoulders and back
*Started to see the faint outline of where abs are just waiting to peek out. It's faint...but it's there :-)
Who's excited?? THIS GIRL!!
So what's next?? Well that's easy, finish the next 5 weeks strong. With the training plan came lots of cardio...not usually my favorite, however, it appears I actually enjoy it. Well...that't not entirely true. My cardio comes in the form of the eliptical or running on the treadmill. What I love is pushing my body further than I thought I could along with the feeling when I've put in my time and I'm sweating my ass off!! Since I'm putting in about 3 miles a day I figured I might as well use it for something bigger...like training for The Gate!! Yep, I have decided to run The Gate River Run in March. It's always something I have wanted to do since I moved to Jacksonville. It's the largest 15k in the U.S. or so they say. Now mind you, I have never run more than a 5k so I am putting my trust in Hal Higdon and hoping he sets me up for success !! I'll celebrate my birthday the same week and what better than checking something off of your bucket list at the same time :-)
7 weeks ago I made a commitment to myself to get fit and healthier. This is the same commitment Iattempted to make last year around this time but for whatever reason, and there were several, I just could not fully commit.
Jump to 7 weeks ago...I'm not exactly sure what changed in me but I made the commitment and am seeing the results I want!! That alone is enough motivation for me to keep going. When say I wanted to get fit and healthier I mean just that. I had my annual physical and everything was in check. Cholesterol was 110, BP was great, however, I had gained a couple of extra pounds here and there. I simply wasn't happy in my skin. I had decided to try eating Paleo 3 months ago and that went well. I followed a strict Paleo diet for the first 30 days and relaxed it to about 85% Paleo for the remaing time. I had a goal weight in mind but really wasn't sure how to get there. Although I noticed a dramatic difference in my energy levels from the Paleo diet, I only lost 4 lbs.
I knew the answer and it was cardio and weight training...but how. Enter Sam, Elle's nanny. Around the same time, Sam had made the same commitment to herself to get fit. She shared with me the program she was about to start. At first I was skeptical but when I looked it up and did a little research about the program it had my full and complete attention.
I'm excited to say that after 7 weeks of a full commitment to Jamie Easons LiveFit Training program
*I have lost 11 lbs of the nasty F word
* increased my muscle mass
*decreased my total body fat by 4%.
*Started to see a lot of definition in my arms, shoulders and back
*Started to see the faint outline of where abs are just waiting to peek out. It's faint...but it's there :-)
Who's excited?? THIS GIRL!!
So what's next?? Well that's easy, finish the next 5 weeks strong. With the training plan came lots of cardio...not usually my favorite, however, it appears I actually enjoy it. Well...that't not entirely true. My cardio comes in the form of the eliptical or running on the treadmill. What I love is pushing my body further than I thought I could along with the feeling when I've put in my time and I'm sweating my ass off!! Since I'm putting in about 3 miles a day I figured I might as well use it for something bigger...like training for The Gate!! Yep, I have decided to run The Gate River Run in March. It's always something I have wanted to do since I moved to Jacksonville. It's the largest 15k in the U.S. or so they say. Now mind you, I have never run more than a 5k so I am putting my trust in Hal Higdon and hoping he sets me up for success !! I'll celebrate my birthday the same week and what better than checking something off of your bucket list at the same time :-)
Error Corrections...
Before you read he next post, please know that something malfunctioned with the "edit" option and no matter what I did...I was unable to edit the post. With that said....there are a few grammatical errors and things that simply make no sense towards the end. Now...I could blame it on Elle, but something tells me she would find out and there would be hell to pay :-)
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