Showing posts with label HKAFO's. Show all posts
Showing posts with label HKAFO's. Show all posts

Wednesday, November 09, 2011

A Reminder and a Re-post

A dear friend and fellow SB mom reminded me of this post I made back in January.  It is one of my favorite posts but it had been quite awhile since I had read it myself.  As I read through this post, I found myself getting very emotional.  Even I need to be reminded of how far Caleb has come.  I know this post meant a lot to some of the parents out there and since there have been new followers in recent months, I thought I would re-post.  Enjoy.

I follow a lot of blogs, blogs done by other SB moms (and one dad) from all over the country...and a couple folks in Canada.  A shout out to you gals in Canada!  I love reading about all of these other kids that are living life with Spina Bifida.  I love reading about their many victories.  I pray for them when they are facing surgeries.  I care about all of these kids and their entire families.  Recently I have noticed that many of the moms out there are struggling.  It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most.  It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk.  You are frustrated.  Beat down.  Exhausted.  Sad.  
You feel like you are giving everything you have to help your child reach these milestones, but it's not working.  Or maybe you are beating yourself up because you don't think you are doing enough.  It's your fault.
I remember those days so well.  I cry sometimes when I read your blogs and I hear the pain in your words.  That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.  And I can vividly remember how different he was, even as an infant.  Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left.  He had to work so hard to keep his head straight.
I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't.  Something so simple.  My son couldn't do it.  I remember leaving that same play date crying.  And honestly I eventually stopped going to play dates altogether.  I didn't want to be reminded of all that was different about Caleb.
So, getting Caleb to hold his head in the center became my priority.  
That was the goal we would work on.

As an infant, Caleb did not move his legs at all.  And I mean no movement.  They just flopped out to the side like a frog.
I saw how other babies would constantly kick their legs and could even stand up a little when held.  Not Caleb.  No movement, no feeling, nothing.  Just sweet little legs that flopped out to the sides.
That became my priority.  I just wanted him to try and use his legs.  That was the new goal.

Next was head control.  I called Caleb "bobble head" because the boy could not hold up his head.  It was just too heavy.
He required so much support.  I just wanted him to be able to hold his head up.  
That became my priority.  
My goal for him.
He was probably 7 months old before he could hold his head steady.
We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him. 
 His PT had to make him a special seat to go in his high chair so that he would have more support when eating.
It felt like we were constantly having to do things, adapt things, to help Caleb.  Things that every other baby could do with such ease, was such a chore for my son.  Everything was a reminder that he was different.

The next priority was rolling over.  I worked and worked with him.  Desperate for him to just roll over.  Begging him too.  Bribing him with toys just out of reach so that he would roll over to get them.  Nothing.  I was convinced that he would never roll over.  While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over.  Caleb was 10 months old when he rolled over for the first time.  It was to get a teddy bear that was out of reach.  I cried.  Rolling became his means of getting around for a long time.  He would just roll across the living room to get to what he wanted.  He found a way.

And then came the milestone that I thought would absolutely break me. Sitting.  Caleb could not do it.  I did everything the PT told me to do, I worked with him daily.  I prayed and prayed.  I asked family to pray.  I was desperate for him to sit up.  I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own.  Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on.  For every mountain he climbed, there was another one waiting.
Each goal became my priority.
Each mountain became my focus.
I made myself a calendar that listed all the things that his PT wanted me to work on.  I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with.  I would highlight the things I worked on for that day.  And I would beat myself up endlessly on the days that I didn't get to everything.  I felt like a failure when I didn't work with him enough.  I carried a heavy burden.  Every day.  Every time I went to the fridge, I saw that list, the things I was supposed to be doing.  A constant reminder that I wasn't doing enough.  I wasn't enough.

I think us moms are way to hard on ourselves.  I know I am.  This idea that we have to do it all, be it all, every single day.  I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry.  We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife.  And that's just naming a few.  We wear a lot of hats.
We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids.  We argue with doctors who think they know more about our child than we do.  We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are.  How sad you are.  You love your child so much and your heart is breaking because he/she isn't walking.  Or sitting up.  Or talking.  Or standing.  Or whatever.  It's always something.  There is always something to work on, a goal to achieve, a milestone to reach.  A mountain to climb.  It's exhausting.

Caleb is 5 1/2 years old now.  I've learned over the years that Caleb does things in his own time.  He works hard and he does as much as his body will allow him to do.  And I've seen him climb many mountains.  I've seen him find a way.  I've seen him succeed.
 I've seen him find joy in mobility.
Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do.  Like crawl on his hands and knees.  He crawled on his belly until he was 3 1/2 years old.  I had all but given up on him ever being able to get his knees up under him.  But he did it, he got stronger, he figured it out.  In his own time.

 I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk.  I have even seen him run.
I've seen him get stronger and stronger.  I have seen him use legs that he can't feel.
And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion.  As Caleb has started school, I have found new things to worry about.  New goals to reach.  But I'm learning to just appreciate all that he is and all that he has accomplished.  My burdens aren't his to carry.  He isn't sad, so why should I be?  Caleb's a happy kid. He always has been.
Even when he couldn't hold up his head, he was still smiling.
Even when he couldn't sit up on his own, he was having fun rolling all over the place.
It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go.  Getting a wheelchair didn't make him sad.  He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired.  Beat down.  Sad.  Defeated.  Go look at your the precious child God has given you.  We have beautiful, strong, resilient, determined kids.  Our kids have and will achieve great things.  Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them.  They already have.  There is great joy in that.

Don't let yourself drown in the milestones.  Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like.  So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.


(so, I'm totally crying all over again!  I'm such a baby)



Thursday, June 30, 2011

Steadfast Progress

Caleb and I were eating lunch alone together today while Benjamin was napping, I can't remember exactly what we were talking about but Caleb made the comment: "I can't walk".
Ouch.
And he didn't say it with sadness, he just said it very matter of fact.  So, of course I jump in and say "Of course you can walk honey, you walk all the time."  Caleb clarified that he meant he couldn't walk without his walker.  And he's right.  He can't walk without his walker.  I've noticed a real longing in him to just walk, like everyone else.  He has said several times recently: "I just want to walk by myself" (again, not in sadness, just matter of fact).  But he can't.  He needs his walker.  I felt the need to immediately show him how far he has come.  I pulled up a video of him when he was barely 2 years old and had just gotten his first pair of HKAFO's and was taking steps for the very first time.


 I really wanted him to see how hard walking was for him and how much slower he used to be.


Two years ago Caleb "graduated" out of his HKAFO's and got AFO's.  I wanted him to see how unsteady he was when he first got those AFO's.


And I wanted him to see the progress he made in just a short time.  (This video was taking 3 months after Caleb first got his AFO's.)


And here is Caleb walking a year after getting AFO's.

And finally a more recent video of Caleb running to first base!

 

I don't know if Caleb truly realizes how far he has come.  I know that even I forget the long road he has traveled.  I needed to see these videos today.  I needed to see how much he has progressed.  I needed to see how strong he has gotten.  It's easy to focus on the things he still can't do but the truth is that there are so many things that he is doing now that he wasn't doing a year ago.  It is constant progress.  Steadfast.  Is it as fast as I would like, or even as fast as he would like?  No.  But it's progress.

Today was physical therapy at the playground and Caleb DID NOT want to go.  And I almost let him out of it.  I almost said: "Okay, we will skip the playground today."  But I didn't.  We went, even though he didn't want to.  And he did great.  He is faster and more confident every single time.  I doubted myself earlier in the day for making him go and tackle that playground but then I saw these videos and I'm reminded that this journey he is on isn't easy.  He has to work hard, even when he doesn't want to.

I've been trying to get him to use his forearm crutches too.
He is so not ready to walk with these crutches.  He wants to.  But there is no way, he just isn't ready...yet.  I've been trying to get him to just stand and balance with the crutches.  It is so hard for him, and it seems like there is now way he will ever be able to walk with these but there was a time when he struggled to walk with his HKAFO's but he got stronger and he did walk.  And he struggled to walk with his AFO's, but he got stronger and he does walk (and even runs sometimes).  So we will practice with the crutches.
He will get stronger.
Everyday is progress.
Redefining.
Steadfast.

Wednesday, January 26, 2011

Taking the scenic route

 I am warning all of you ahead of time that this is long.  I'm asking you to avoid just "skimming" and glancing at the pictures.  Take a few minutes to read.  I think this will mean something to many of you.

I follow a lot of blogs, blogs done by other SB moms (and one dad) from all over the country...and a couple folks in Canada.  A shout out to you gals in Canada!  I love reading about all of these other kids that are living life with Spina Bifida.  I love reading about their many victories.  I pray for them when they are facing surgeries.  I care about all of these kids and their entire families.  Recently I have noticed that many of the moms out there are struggling.  It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most.  It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk.  You are frustrated.  Beat down.  Exhausted.  Sad. 

You feel like you are giving everything you have to help your child reach these milestones, but it's not working.  Or maybe you are beating yourself up because you don't think you are doing enough.
 
It's your fault.

I remember those days so well.  I cry sometimes when I read your blogs and I hear the pain in your words.  That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.  And I can vividly remember how different he was, even as an infant.  Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left.  He had to work so hard to keep his head straight.
I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't.  Something so simple.  My son couldn't do it.  I remember leaving that same play date crying.  And honestly I eventually stopped going to play dates altogether.  I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority. 

That was the goal we would work on.

As an infant, Caleb did not move his legs at all.  And I mean no movement.  They just flopped out to the side like a frog.
I saw how other babies would constantly kick their legs and could even stand up a little when held.  Not Caleb.  No movement, no feeling, nothing.  Just sweet little legs that flopped out to the sides.
That became my priority.  I just wanted him to try and use his legs.  That was the new goal.

Next was head control.  I called Caleb "bobble head" because the boy could not hold up his head.  It was just too heavy.
He required so much support.  I just wanted him to be able to hold his head up. 

That became my priority.
 My goal for him.

He was probably 7 months old before he could hold his head steady.
We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him. 
 His PT had to make him a special seat to go in his high chair so that he would have more support when eating.
It felt like we were constantly having to do things, adapt things, to help Caleb.  Things that every other baby could do with such ease, was such a chore for my son.  Everything was a reminder that he was different.

The next priority was rolling over.  I worked and worked with him.  Desperate for him to just roll over.  Begging him too.  Bribing him with toys just out of reach so that he would roll over to get them.  Nothing.  I was convinced that he would never roll over.  While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over.  Caleb was 10 months old when he rolled over for the first time.  It was to get a teddy bear that was out of reach.  I cried.  Rolling became his means of getting around for a long time.  He would just roll across the living room to get to what he wanted.  He found a way.

And then came the milestone that I thought would absolutely break me. Sitting.  Caleb could not do it.  I did everything the PT told me to do, I worked with him daily.  I prayed and prayed.  I asked family to pray.  I was desperate for him to sit up.  I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own.  Caleb was about 15 months old before he could sit up well on his own.

With every milestone reached, there was another one that needed to be worked on.  For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on.  I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with.  I would highlight the things I worked on for that day.  And I would beat myself up endlessly on the days that I didn't get to everything.  I felt like a failure when I didn't work with him enough.  I carried a heavy burden.  Every day.  Every time I went to the fridge, I saw that list, the things I was supposed to be doing. 

A constant reminder that I wasn't doing enough. 

I wasn't enough.

I think us moms are way to hard on ourselves.  I know I am.  This idea that we have to do it all, be it all, every single day.  I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry.  We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife.  And that's just naming a few.  We wear a lot of hats.
We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids.  We argue with doctors who think they know more about our child than we do.  We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are.  How sad you are.  You love your child so much and your heart is breaking because he/she isn't walking.  Or sitting up.  Or talking.  Or standing.  Or whatever.  It's always something.  There is always something to work on, a goal to achieve, a milestone to reach.  A mountain to climb.  It's exhausting.

Caleb is 5 1/2 years old now.  I've learned over the years that Caleb does things in his own time.  He works hard and he does as much as his body will allow him to do.  And I've seen him climb many mountains.  I've seen him find a way.  I've seen him succeed.
 I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.

I've seen him do things we were told he wouldn't be able to do.

I've seen him do things I didn't think he would ever do.  Like crawl on his hands and knees.  He crawled on his belly until he was 3 1/2 years old.  I had all but given up on him ever being able to get his knees up under him.  But he did it, he got stronger, he figured it out.  In his own time.

 I've seen him graduate from HKAFO's to just AFO's.

And I have seen him walk.  I have even seen him run.
I've seen him get stronger and stronger.  I have seen him use legs that he can't feel.
And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion.  As Caleb has started school, I have found new things to worry about.  New goals to reach.  But I'm learning to just appreciate all that he is and all that he has accomplished.  My burdens aren't his to carry.  He isn't sad, so why should I be? 

Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go.

Getting a wheelchair didn't make him sad.  He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired.  Beat down.  Sad.  Defeated.  Go look at your the precious child God has given you.  We have beautiful, strong, resilient, determined kids.  Our kids have and will achieve great things.  Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them.  They already have.  There is great joy in that.

Don't let yourself drown in the milestones.  Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like.  So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

Monday, January 04, 2010

Then...and Now

I know I keep bragging about how far Caleb has come and how well he is doing with his walker and braces, but I really wanted all of you to see what I mean.  This first video was taken in October of 2007, Caleb was 2 years old.  Caleb had just gotten his HKAFO's (long braces that start at the hip) and he was learning how to walk in them using a walker.  Watching this video just warmed my heart.  He looks so precious.  I love those chunky legs, I miss that!  I was reminded how Caleb was not talking at 2 years old, I think he had 4 words at this point (mama, dada, on, off).  Of course now he talks from sun up to sun down.

This video was taken yesterday.  Look at how far my boy has come!  It is absolutely amazing.  He graduated from the HKAFO's to AFO's this summer and hasn't stopped since.  
Is that amazing or what?!  For those of you with SB kiddos, please know that anything is possible.  I never expected to see Caleb doing this well, we were told that this would not happen.  Caleb is proof that doctors and therapists don't know everything.  Who knows what our kids are capable of.

Picture of how his braces have changed.  The HKAFO's are the big braces on the right, the AFO's (left) are the braces he wears now.  Big difference!  Praise God!

Wednesday, March 18, 2009

Braces and Walker

Here are few recent pictures of Caleb with his braces and walker. This very shiny, very gold walker is from school. This one has front wheels that swivel so we borrowed it from his school so he could use it at home over spring break. We recently ordered Caleb a walker that will have swivel wheels...but it won't be gold! We are working on really challenging him with his braces. We are beginning to unlock one knee while he is walking to see how he does and he is actually doing really well. We are also loosening the hip straps so that he doesn't have as much support. The goal is to get him strong enough so that his next set of braces will start at the thigh instead of the hip. He's doing wonderful so I don't see why he couldn't eventually switch to less bulky braces. I am continually amazed by how well he is doing and how strong he is. There is no telling what this boy will be doing in the future.

Monday, March 02, 2009

Recent Pictures

Here are a few recent pictures.

Benjamin's appointment with Cranial Technologies went well. Basically his oval head shape is environmental, it is due to him spending too much time laying on the sides of his head instead of the back. So the doctor recommended that Benjamin simply spend more time laying on the back of his head. This is proving to be quite difficult because he doesn't really like laying on his back with his head straight so we are using positioners to keep his head straight. Hopefully this will help his head to grow into a more round shape. We take Benjamin back in a month to see how his head looks.

Here is Benjamin in his "little brother" shirt. He was right in the middle of a pout when I took this picture!

Our boys! This picture was taken while we were waiting for Caleb's new braces. Caleb is doing so great with Benjamin. Every morning Caleb asks "How's Ben today?". It's so cute. Glenn and I call him Benjamin but Caleb says "No, just Ben." Caleb is proving to be a good big brother.

Tuesday, February 03, 2009

Spina Bifida Clinic

Caleb had a very long day today at Spina Bifida clinic. We were there for almost 8 hours, which makes for a very long day. Caleb saw the dentist and did absolutely amazing. I couldn't believe how well he did considering it was his first time seeing the dentist. He let the dentist do all the things that needed to be done. I was so proud of him. Caleb also got casts of his legs made for some new braces. He has outgrown his first set of leg braces so he will be getting some brand new ones in a few weeks.

Friday, October 31, 2008

Halloween Party

Caleb had a Halloween Party at his school today. I was able to go and help out with some of the crafts. It was so fun watching Caleb at school, he seems to really enjoy himself. He did several Halloween crafts today and the class got some special treats. I was able to meet the physical therapist as well and I got to watch Caleb do some walking with his braces and walker. The PT lets Caleb walk to one of the kindergarten classes and say "hi" to all the kids. It was great watching him walk down the halls, saying "hi" to anyone and everyone that walked by. The goal is to get him using his braces and walker more and more in the classroom. He just works so hard, I was so proud of him.

Friday, September 05, 2008

Caleb, the builder

Here are a couple of pictures from tonight, Caleb was playing at his "Bob the Builder" table. He may not have any pants on but he is sportin' his construction hat. Isn't that smile precious?

Monday, September 01, 2008

Nothin' but net

Caleb got a small basketball goal for his birthday. Here are a couple of pictures from this morning. We hung it on the back of a chair so that Caleb could stand in his braces to throw the ball in. He had a blast and he is actually a pretty good shot!

Monday, June 16, 2008

So Big

Caleb is doing so great with his braces and walker, and he just looks so big!! I can't believe he is going to be 3 years old in less than 2 months. I swear he was just in my belly!

He loves to throw the tennis ball and then walk to get it so that he can throw it again.

Monday, May 12, 2008

With Ms. Chris

Here are some pictures of Caleb working hard for Ms. Chris, his wonderful physical therapist. I love seeing him in his braces because he just looks so big! I'm usually behind him when he is in his braces so I don't always get to see what he looks like from the front. I'm always shocked to see how tall he actually is! Ms. Chris works Caleb very hard but he is a trooper (usually). She had him walking up to a ball and then kicking it, which he did very well. Then she had him color while standing up. He is always tired and hungry when she leaves!
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