Alexa Update
We all have a story.
It belongs to only us and no one else.
This is a new chapter in Alexa's story.
A chapter that I did not wish for her but one that I know in time, will touch someone and make a difference in their life.
This.has.been.hard.
Let me catch you up.
This is Alexa's Boston Brace.
This is her being fitted for the brace.
Not sure how I feel about this brace quite yet.
Right now, Alexa hates it. And...I hate it for Alexa.
She is struggling and it takes everything in me to try and stay positive for her. But I will do anything to push her because I know deep down she is one of the toughest girls out there.
There are 3 stages:
Stage 1: Alexa is required to wear the brace for 6 hours per day for two weeks. We are to take it off every 2 hours to check for any sores of rubbing on her skin. Right now, we are trying to fit the hours in at home as Alexa is not ready to wear it to school or even out of the house at all.
Stage 2: Alexa will be required to wear the brace for 10 hours a day for one week. She will be wearing the brace to school at this point. She will check in with the school nurse halfway in the day to check for sore spots or rubbing. She will be able to take it off for P.E. and recess if she chooses. She will have to make up the time that it is off when she gets home.
Stage 3: Alexa will be required to wear the brace for 18-23 hours a day continually. She will be wearing it to school as well as sleeping in her brace.
Right now, we are barely getting in the 6 hours per day. There have been a lot of tears and it breaks my heart.
There are three straps on the back of the brace. Over time we are to pull them tighter and tighter until they reach the mark on the strap being the goal for the brace to fit properly.
She has to take it off to use the bathroom as she can't get her pants back up afterwards. She also complains that she can't breath very well in the brace and sitting isn't very comfortable.
Here's the thing, this isn't Alexa's only challenge right now as she fights every single day to get through school work and get caught up because she is always a little behind her peers. She is so smart and things come to her in their own time. Unfortunately, school time fits in a mold that's a different shape than Alexa's time. She is really feeling her school struggles this year and it's been a bumpy road academically as well as socially.
To have to wear a brace on top of that has been extra weight on her tiny shoulders.
I can give her wise words about how one day, she will make a difference with her story.
One day, she will be able to be there for another girl who is facing what she faced.
One day, she'll look back and see growth and strength.
But right now we have today and all I can give her are hugs and validate her feelings that this all sucks.
I let her know daily that all she is feeling right now is OK to feel.
That it is okay to be mad, it's okay to be frustrated and it's okay to be confused.
It's okay to not want to talk about it.
It's okay to be embarrassed.
It's okay to use the word "hate" because sometimes you need a strong word to describe your deep feelings.
There have been many comments and questions inquiring about Alexa.
Please be gentle.
This is her story and there is a difference between saying something positive and diluting the issue.
"She will get used to it"
"At least it's not surgery"
"I couldn't even tell she had a curve"
"I didn't even notice"
This is not a cosmetic remedy.
After doing much research and educating myself on all angles of Scoliosis, a lot of kids that go through bracing end up having surgery. However, we are optimistic that we caught it at a time where she can wear the brace and prevent any further curvature. Surgery is not on my mind at all as we take this one appointment at a time because thinking outside of that is overwhelming.
This is a life long issue. The plus side is that people can go on and do amazing things with Scoliosis and live an incredible life. I've done my research and I know that and of course that's what the goal is with her treatment.
The pressure as a parent to make the right decision and choose the best way to treat this is very overwhelming. What decisions I make right now for treatment could make a positive or negative influence later in life...that's a hard pill to swallow.
I know many of the options out there for treatment. We have explored, researched and discussed.
This is a family decision and at this time, this is what we feel is best for Alexa; as hard as it's been convince her that something that sucks so bad is actually a good thing.
I think convincing any kid of that is a challenge. Heck, that's more than half of being a parent at all, right?
I have NO doubt in my mind that this girl is going to do great things in this world and use this chapter of her life to change the life of others.
I feel it in my bones.
Until that day comes, I will be walking along side this girl and respect her feelings and the choices that she CAN make along the way.
This is her story.
Thank you to those who have reached out and sent encouragement and love for Alexa! She feels it and for my "words of affirmation" girl, words make a huge difference!
It belongs to only us and no one else.
This is a new chapter in Alexa's story.
A chapter that I did not wish for her but one that I know in time, will touch someone and make a difference in their life.
This.has.been.hard.
Let me catch you up.
Not sure how I feel about this brace quite yet.
Right now, Alexa hates it. And...I hate it for Alexa.
She is struggling and it takes everything in me to try and stay positive for her. But I will do anything to push her because I know deep down she is one of the toughest girls out there.
There are 3 stages:
Stage 1: Alexa is required to wear the brace for 6 hours per day for two weeks. We are to take it off every 2 hours to check for any sores of rubbing on her skin. Right now, we are trying to fit the hours in at home as Alexa is not ready to wear it to school or even out of the house at all.
Stage 2: Alexa will be required to wear the brace for 10 hours a day for one week. She will be wearing the brace to school at this point. She will check in with the school nurse halfway in the day to check for sore spots or rubbing. She will be able to take it off for P.E. and recess if she chooses. She will have to make up the time that it is off when she gets home.
Stage 3: Alexa will be required to wear the brace for 18-23 hours a day continually. She will be wearing it to school as well as sleeping in her brace.
Right now, we are barely getting in the 6 hours per day. There have been a lot of tears and it breaks my heart.
There are three straps on the back of the brace. Over time we are to pull them tighter and tighter until they reach the mark on the strap being the goal for the brace to fit properly.
She has to take it off to use the bathroom as she can't get her pants back up afterwards. She also complains that she can't breath very well in the brace and sitting isn't very comfortable.
Here's the thing, this isn't Alexa's only challenge right now as she fights every single day to get through school work and get caught up because she is always a little behind her peers. She is so smart and things come to her in their own time. Unfortunately, school time fits in a mold that's a different shape than Alexa's time. She is really feeling her school struggles this year and it's been a bumpy road academically as well as socially.
To have to wear a brace on top of that has been extra weight on her tiny shoulders.
I can give her wise words about how one day, she will make a difference with her story.
One day, she will be able to be there for another girl who is facing what she faced.
One day, she'll look back and see growth and strength.
But right now we have today and all I can give her are hugs and validate her feelings that this all sucks.
I let her know daily that all she is feeling right now is OK to feel.
That it is okay to be mad, it's okay to be frustrated and it's okay to be confused.
It's okay to not want to talk about it.
It's okay to be embarrassed.
It's okay to use the word "hate" because sometimes you need a strong word to describe your deep feelings.
There have been many comments and questions inquiring about Alexa.
Please be gentle.
This is her story and there is a difference between saying something positive and diluting the issue.
"She will get used to it"
"At least it's not surgery"
"I couldn't even tell she had a curve"
"I didn't even notice"
This is not a cosmetic remedy.
After doing much research and educating myself on all angles of Scoliosis, a lot of kids that go through bracing end up having surgery. However, we are optimistic that we caught it at a time where she can wear the brace and prevent any further curvature. Surgery is not on my mind at all as we take this one appointment at a time because thinking outside of that is overwhelming.
This is a life long issue. The plus side is that people can go on and do amazing things with Scoliosis and live an incredible life. I've done my research and I know that and of course that's what the goal is with her treatment.
The pressure as a parent to make the right decision and choose the best way to treat this is very overwhelming. What decisions I make right now for treatment could make a positive or negative influence later in life...that's a hard pill to swallow.
I know many of the options out there for treatment. We have explored, researched and discussed.
This is a family decision and at this time, this is what we feel is best for Alexa; as hard as it's been convince her that something that sucks so bad is actually a good thing.
I think convincing any kid of that is a challenge. Heck, that's more than half of being a parent at all, right?
I have NO doubt in my mind that this girl is going to do great things in this world and use this chapter of her life to change the life of others.
I feel it in my bones.
Until that day comes, I will be walking along side this girl and respect her feelings and the choices that she CAN make along the way.
This is her story.
Thank you to those who have reached out and sent encouragement and love for Alexa! She feels it and for my "words of affirmation" girl, words make a huge difference!
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