Showing posts with label walker. Show all posts
Showing posts with label walker. Show all posts

Monday, February 11, 2013

Caleb walking

It has been almost a year since Caleb's tethered cord surgery, almost a year since I have seen him walk. Thanks to the knee immobilizers, he is walking. Just a little bit at a time, but he is able to walk.

I know many of you saw this on facebook already but for those of you that haven't....

I think I am more excited than he is. He told me today that "walking is boring". I guess it is boring to him because I've just had him walk around the living room with no purpose. Plus walking is slow and it is hard work. Hopefully he'll feel encouraged as his legs get stronger and his endurance increases. I'm just thrilled to see him upright. I don't think I realized how tall he was until I couple of days ago. He has definitely grown in the last year.

Thursday, August 23, 2012

Progress Indeed

Standing yesterday...taking STEPS today!

I have no words right now. I just can't believe it. This kid has been holding out on me or something!

Wow, just wow.

Wednesday, August 22, 2012

Progress: The view looks pretty good from here

Caleb has made significant progress in the last couple of weeks. Significant. Progress that came at just the right time. I had been feeling like we were losing so much ground because of his swollen knee (that whole thing is still a mystery even after 2 x-rays and blood work. Oh and the knee is still swollen, although it is better). He took it easy in therapy for several weeks because we were so worried that we would do more damage to the knee. I was so frustrated during that time. I had psyched myself up to climb the mountain again, only to be sidelined because of the knee. I have felt absolutely panicked because Caleb starts school next Monday and he was still lacking in strength. I kept wondering if we were pushing him to do things that he just couldn't do, and may never do again. We've (or he's) been working so hard the last couple of weeks. And as a result of all that hard work, there is progress.  All of a sudden his sit-ups are better and his bridges are higher.  He is getting up to a tall-knee position.  He is climbing up on the couch. All of a sudden he is getting stronger, and I can see it. 
And today this:
Standing up.

This is the first time I have seen him stand up since April 2nd, the day before his tethered cord surgery.

Over 4 1/2 months since I've seen him hold his own weight with his legs.
4 1/2 months.

He obviously has a long way to go to get back to where he was pre-TC but I see the possibility now. A possibility that I didn't see a month ago. I'm just so glad to see his hard work paying off. I know he has felt discouraged too. Who wouldn't? He sees the progress he is making and I see him gaining confidence and pushing himself. It is still a long way up the mountain but I feel like I just caught a glimpse of what is to come.

The view looks pretty good from where I sit right now.

It was definitely a good day for this momma.

Now having said that...if I'm ever told that he needs TC surgery again, we will promptly pack our bags and move to a tropical island, where we will put our heads in the sand like an ostrich and pretend we never heard the words "tethered cord". 

Wednesday, January 18, 2012

At the farm

We took advantage of the long weekend and took the boys to see MeMe.  We had planned to go over Christmas but Caleb's UTI kept us home over the holidays.  The boys were so excited to be going to to MeMe's (great-grandma).

MeMe has a nice big back yard and thanks to some beautiful weather, the boys were able to spend quite a bit of time outside.
Benjamin mowed the grass.
I want to take a quick side note here to chat about Mr. Benjamin.  When he turned 3 last month I really got to thinkin' that I better potty train this kid.  I kept thinking that he would just decide to train himself or something, like he would wake up one morning and just want to use the potty.  I realize now that was crazy thinking.  Benjamin was perfectly happy in diapers and showed no interest in the potty, at all.  So I did a bit of research and several people recommended this 3 day method, kinda like a crash course in potty training.  The lady that developed it insists that your child will be potty trained (even overnight) in only 3 days.  Sounds perfect, right?  Basically you have your child throw out all the diapers and put undies on them right away.  Then you pump them full of fluids, don't leave their side (not even to let the dog in because your child will pee on the floor-not that I know this from experience or anything).  So I stayed with my eyes glued to Benjamin for 3 days, I barely left his side and tried to catch him before he had to go and rush him to the potty.  We didn't leave the house for several days.  It was a very. long. frustrating. process which involved the washing of many undies and cleaning the carpet on more than one occasion.  I can't say he was completely potty trained in 3 days, but after day 5 he was no longer having any accidents and was letting us know every time he needed to pee.  He has even stayed dry the past 3 nights!  So, I think I can safely say that Benjamin is in big boy undies and is doing very well.  Potty training is ridiculously hard and I suspect it is harder the longer you wait, in hindsight I wish I had started a bit sooner.

Okay, let's move on.

The boys had fun blowing bubbles in the backyard.

Because of Izzy and her giant crate we didn't have room for Caleb's wheelchair which meant he had no choice but to use his walker the entire time.  He did really well all weekend.  It's hard work for him and I know he gets so tired but he did great.

And no trip to MeMe's is complete until you take the riding low mower out for a spin.  The boys had way too much fun.
Sitting by the water.

MeMe has a bit of land with some cattle so we took the boys to see the cows.

Caleb feeding one of the cows.  I was so proud of him, in the past he has been very nervous around the cows because they are quite noisy when they all get to "moooing".  He was still a bit anxious but he actually had fun this time.

Another side note:  While we were out on the land feeding the cows Benjamin had to pee, so my big boy peed outside for the first time.  I'm pretty sure that is a right of passage for boys. (I don't have a picture of that-which I am sure Benjamin will be thankful for)

I just thought this was so sweet.  A mama and her baby.  Ahhh.

Izzy Bell was totally in her element while we were there.  She loved having all the space to run and explore (although she was terrified of the cows).  And I mean terrified.  It was hysterical.  I guess if I was a 30 pound dog I would be pretty nervous around a bunch of huge cows!  After all, she is a bird dog, not a cattle dog. :)

It was a really great weekend and the boys had so much fun.

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 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)

Monday, September 12, 2011

Water Park Fun!

Every September Glenn's work gets the local water park all to itself.  So Saturday we took the boys to have some water park fun.
The boys immediately went to the water fountain path.

The water fountains were, by far, Benjamin's favorite thing at the water park.  He spent the majority of the time playing with and in the water fountains.

Benjamin would cover the fountains with his foot...and when he would move his foot...
...he would get squirted directly in his eye!  He must have done this a dozen times.

The weather on Saturday was really nice.  However, Texas had cooler temps during the week and that seems to have affected the water temp at the water park.  The water was FREEZING.  Seriously, frigid cold.  I could barely get in to my knees but Caleb....
 got right in!  I guess icy cold water doesn't bother this kid.
Benjamin was a bit more cautious with the chilly water.
We took the boys over to the "kiddie section" and Benjamin was all ready to have some major fun.  But then the giant bucket of icy cold water dumped over from 20 feet in the air and Benjamin sprinted out of the kiddie area....and refused to go back.
I love this picture.
Oh, and while we were at the water park, someone lost another tooth (with daddy's help).
All-in-all a good day at the water park. :)

Thursday, July 28, 2011

Worthy of Life

I am a member of this wonderful group on BabyCenter called "Spina Bifida Kids".  This online group is for parents who have a child or are expecting a child with SB.  There are well over 700 members in this group.  It is a wonderful community, full of parents who are more than willing to encourage and support each other.  We share the same journey.  We cry together.  We rejoice together.  We know all the SB lingo.  No explanation needed.  We are family.  At least once a week, maybe twice, a new member joins our group.  Not because she wants to be a part of our group but because her baby has just received the SB diagnoses.  She has just been told that her baby has Spina Bifida.  Immediately fellow members reach out to her with words of encouragement and the truth.  Many times these newcomers to our group have been told some very horrible, terrifying things about their baby.  They have been painted a very grim picture.  They have been lead to believe that their child, this baby that they love, will have no quality of life.  This comment was posted just today:

"We were told that she will not be able to walk.  At best we could hope for her to be able to transfer from bed to chair when she got older; however, due to the lesion being at L1 that was not looking too good either.  We've been told she will more than likely have MR (mental retardation)...."

I was absolutely heartbroken when I read this.  And this is just one of many examples I see on a regular basis.  The parents of this unborn baby girl have basically been told that the most their daughter will achieve is being able to transfer from her bed to a wheelchair.  That's it.  That is all there is to hope for.  Really??  The baby isn't even born yet and these predictions are already being made.  It is ridiculous and absolutely infuriating.  There is no way you can tell what a child is capable of just by looking at a sonogram halfway through a pregnancy!  A doctor has no right to make these statements.  I have no idea if this particular family is considering termination, it wasn't mentioned in the post.  However, based on what they have been told about the quality (or lack thereof) of their baby girl's life I wouldn't be a bit surprised if termination wasn't "offered".  When Glenn and I were told that Caleb had SB, we were told very similar things to what this family has been told.  

We were told that Caleb wouldn't walk.
We were told that he would be "mentally retarded" (doctor's exact words)
And we were offered termination more than once and told that we needed to hurry because I was approaching the cut off date for an abortion.

Another mom joined the BabyCenter group this week.  She has just been told that her baby boy has SB.  She is "considering" termination.  Breaks my heart.  I cry for the babies that are never given a chance.  I cry for the parents that feel like termination is the right choice or the only choice they have.  I cry for the parents that choose termination because some moron doctor has given them false information.  I am always so thankful for the parents that come to the BabyCenter group because we rally around them so quickly.  We share our kids with them.  We show them how wonderful our children are and how worthy they are of a chance at LIFE.  We tell them the TRUTH.  No, SB is not easy. It is not a walk in the park.  It really stinks sometimes.  But our kids are amazing.  They are rock stars!  They touch lives and change lives.  This world would be lacking without them in it.  They are deserving of LIFE. 

Caleb is worthy of LIFE.
And another thing, why is a wheelchair seen as the worst thing imaginable?  Why does a child needing a wheelchair mean that they will have a poor life?  Is our value in our ability to walk!?  Let's remember that all of us, everyone on this planet, is one car accident or one stroke from needing a wheelchair ourselves.

Caleb's worth is not determined by his mobility.  His worth is in the fact that he was created by God.  It doesn't matter how he gets from point A to point B.  I care about Caleb's heart.  His character.  His moral compass.  I want him to know Jesus, to love Jesus, to live his life for Christ.  I care about the eternal, not the temporal.

Caleb is worthy of life.  SB doesn't take away the value of his life. My hope is that this blog, and other blogs like it, will continue to redefine Spina Bifida.  I fully believe that the Spina Bifida Kids group and blogs have saved lives.  I know that there are babies with SB that were given a chance at life because their mom or dad signed into the BabyCenter group or somehow stumbled upon a blog that showed how wonderful these kids are. They are all worthy of life.  

Now if we could just get these medical professionals to visit our blogs so that they could see what Spina Bifida looks like because most of them don't have a clue!

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".
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.

Thursday, June 23, 2011

Finding Balance

Sometimes I find it difficult to achieve a balance between Caleb having Spina Bifida and Caleb just being Caleb.  Does that make sense?  I'll try to explain with a recent example.  I had thought about sending Caleb to a few different VBS programs in our area this summer, instead of just going to the VBS at our church.  But then I second guessed myself because I wasn't sure how to handle it.  Everyone knows Caleb at our church, I don't have to explain anything anymore.  They know him.  Other churches don't know Caleb.  So I wondered if I needed to call ahead to a church to say "Hey, I'm bringing my 5 year old to VBS at your church this week, but wanted to let you know that he has Spina Bifida and will be using his wheelchair."  Or could I just do what every other parent does and just drop him off with no explanation at all?  Do you see where I am going with this?  Is it necessary to "prepare" people in advance just because Caleb has Spina Bifida?

And this isn't just about VBS, I can think of other examples as well.  I try to find opportunities to get Caleb around other kids and people that have wheelchairs, braces, and walkers.  I jump at the chance to expose him to adaptive sports so he can see all the wonderful things that are possible.  But sometimes I worry that I don't take him to do all the things that other kids his age would do.  Does that make sense?  I love getting him together with his fellow SB buddies but I don't necessarily work to set up play dates with other kids.  Am I defining him?  Am I keeping him from doing things because I make decisions based on the whole SB thing?  How do I find the balance?  The best of both worlds?  I wonder if Caleb will find it difficult to achieve balance as he gets older, as a teenager and then as an adult.  I'm sure part of him will enjoy meeting with others that share the same experiences as he does, all the things that go with SB but I'm certain part of him will just want to fit in and not just be "Caleb with SB". 

I wonder if I do too much for him.  I do a lot for him (and Benjamin too), not because I don't think he can do it, but because I can do it faster.  And maybe this isn't a SB thing, maybe it is just a parent thing or a mom in a hurry thing.  I can get him dressed faster than he can do it so I just do it.  Well, he's about to be 6 years old and I'm certain I won't be getting Benjamin dressed when he is 6 so why in the world and I dressing Caleb?  This has been one of my goals this summer (along with tackling the playground).  We have been having Caleb get himself undressed at night before bath.  It is somewhat difficult for him and he was a bit resistant at first but he does it.  Getting pants/shorts off are the hardest for him to do but he does it.  Could I get him undressed faster?  Without a doubt.  But I'm not doing him any favors by doing these daily tasks for him.  I'm reminding myself that I am not raising little boys, I am raising men and future husbands.  Caleb is very capable, and I know that, but I'm am sometimes guilty of not giving him the opportunity to show me and himself how capable he is.  I admit fully that I jump in and help when I see him struggling with something.  It takes restraint on my part not to come to his rescue.  I see the pride he feels when he does something new on his own.  He loves it.  Mastering a task sends his confidence through the roof.  And I want him to be confident.  So, I am taking a breath, and deciding right now to give this boy, this future grown-up, more responsibility.  Not just with dressing/undressing, but with other things as well.  He often asks me to get him a drink so I do but ya know he is capable of walking to the fridge and filling his cup with water.  Sometimes the little things are just as important as the big things.   I feel a breeze of change blowing folks!

Does anyone else out there find achieving balance difficult?  Am I the only one?

And because no blog is complete without some pictures...
Caleb and Benjamin had some fun splashing in a puddle today.  Their socks and shoes (and Benjamin's shorts) were soaking wet by the time they were done.

I took these pictures of Benjamin a couple of weeks ago while Caleb was doing his horseback riding. 
He was fascinated with the wheelbarrows.  I love that little booger.

I even find achieving a balance with this blog to be difficult.  I worry that I focus too much on Caleb and Spina Bifida and not enough on Benjamin and how precious he is.  He is a lot of personality in a little bitty package.  I am so thankful for Benjamin.  Whenever I feel sad about the 2 pregnancy losses I had before Benjamin, I remember that if I hadn't lost those babies then I wouldn't have Benjamin.  And he just brings me so much joy.  I need to do an "all about Benjamin" blog post soon so I can share all of my favorite things about him.
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