Showing posts with label mobile stander. Show all posts
Showing posts with label mobile stander. Show all posts

Monday, December 08, 2014

December ADVENTures: Days 6-8

December 6th: Holiday Parade

We took the boys to the parade on Saturday. The weather was so pretty that day, it was perfect. I apologize in advance for the fact that you can't actually see the boy's faces in these pictures. We were at a all I got was the back of their heads.

Look at those curls on that boy! His hair is so cute right now, I can't take it. I've wanted to grow his hair out in the past, but we've always kept it short. Benjamin decided he wanted to grow it out so we are. I love it. He gets so many compliments on his curls....he loves the attention.

The boys loved watching the parade. They especially loved all the candy they came home with.

Wheelchair perk: Being the only kid at the parade that gets a personal invitation to sit in the firetruck. It was super nice of the firefighters to take the time to do that for Caleb. He loved it. I could do an entire blog post on wheelchair perks and how I feel about it (mixed feelings I guess). 

December 7th: Elf Yourself Video:

Some days we (mommy) needs and easy activity. So, we made a few Elf Yourself videos. The boys thought they were hysterical. 

December 8th: Fingerprint Crafts

I saw these Christmas craft ideas using fingerprints and I thought they were so cute. I had some extra tiles so we used those for our crafts. You can use these tiles as coasters or decorations.

Working hard on his wreath.

It ain't a craft if it ain't messy.

Caleb's fingerprint light strand. Benjamin fingerprint Christmas wreath. 

Fluffy Sweet Sugar (our Kindness Lamb) has had some things for us to do as well.

We baked a pumpkin pie for Daddy. Yes I know Thanksgiving is over so the time for pumpkin pie is past. But really, does the time for pumpkin pie ever pass? I don't think so. Plus I wasn't feeling well over Thanksgiving so I didn't get a chance to make a pie.

Mixing it up. I love how the mobile stander gives Caleb the ability to help in the kitchen.

One day we just put this little bag of goodies in the mailbox for the mail carrier to find. He took it because it was gone when I went to check the mail!

Monday, September 29, 2014

Mobile Stander

Most of you know that Caleb had tethered cord release surgery in April of 2012, so it's been about 2 1/2 years since his detethering. Most of you also know that prior to the surgery Caleb was standing and walking very well with just his AFO's and walker. And you also know that Caleb pretty much lost all function from the waist down after TC and it has been a long hard road of therapy and rehabilitation. Caleb still isn't where he was....and he may never be...but he continues to get stronger. I really wanted a way for Caleb to be upright for longer periods of time. He has KAFO's that he can stand in but he does fatigue quickly so I wanted something that would allow him to stand and move freely. I present the mobile stander!

This is a loaner that we received through our local SB clinic. Basically Caleb is strapped in and supported in a standing position. It allows him to be upright and mobile at the same time. Now this isn't our first time using a mobile stander....but as you can see, it's been a few years. :)

Oh my. I can't stand the cuteness of that chunky 18 month old on the left! When did he get so big? I blinked and he was nine. Seriously. 

Caleb loves the mobile stander. He's spinning circles in this pic. I think he just loves being so tall and mobile at the same time. 

Little bro had to hitch a ride. 

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 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.

Tuesday, December 18, 2007

Outside in the Mobile Stander

We took advantage of the semi-warm weather yesterday and went outside. Caleb loves being outside in his mobile stander. His favorite thing is to speed down the driveway, often backwards! I have to stand at the end of the driveway to stop him from flying into the street. The stander really allows him to experience movement that he can't do on his own. Going really fast in his stander is his way of "running". The wheels kinda serve as legs for Caleb. We are so blessed to have this kind of equipment available for Caleb to use. He loves it. The bottom picture is of Caleb discovering his shadow. He would wave his arms in the air just to watch his shadow do the same. It was pretty cute. He's pretty cute.

Sunday, November 18, 2007

Camp John Marc 2007

We just had a wonderful weekend at Camp John Marc. This is a camp for kids with special needs. This weekends camp was for families that have a child with Spina Bifida. There were about 16 families there, most of which were from North Texas. It was so great to see all of these different kids and their abilities. It was wonderful to meet so many other parents that understand what it is like to have a child with Spina Bifida and all the things that go with that diagnoses. The camp provided several activities for us to do. We had a campfire with s'mores the first night, Caleb was mostly interested in the graham cracker, he didn't quite know what to think about the marshmallow. Caleb got to pet a snake (yikes), a bird, and a bunny. He also made some slime with daddy. Saturday night was a carnival in the barn with all the families and their kids, that was the most fun. Caleb was in his mobile stander and I have to tell you that I have never seen that boy be so social. He was all over the place, playing with different people, giving other mom's hugs, and he followed this adorable little girl with curly blonde hair around (she did have a snow cone in her hand so we aren't sure if it was her or the snow cone Caleb was after). I was just so proud of him, he had such a blast that night. We went fishing this morning but didn't catch anything, Caleb enjoyed it when another dad caught a fish and let Caleb touch it. Anyway we had a great time, this camp is such a wonderful place and we are looking forward to going back next year.

Sunday, September 16, 2007

Cruising the neighborhood

Caleb had a get together with his buddies, Ethan and Bryce. They decided to cruise the neighborhood in their mobile standers. Caleb loved being outdoors in his stander, he just wanted to go up the driveway and then go down as fast as he could (scared me to death). Bryce thought it was too hot outside (it was) and he just wanted to go in. And Ethan took off around the corner and was completely out of sight (don't worry his momma was with him). Ethan didn't make it into any of the pictures I took because he rounded the corner so fast I never got a chance to get a shot of him! It was cute to see the boys in their standers. Since they can't walk yet on their own, the mobile standers really serve as their legs and it allows them to "walk" and "run" in a way. Caleb was very tired after being with his friends and he took a nice long nap afterwards.

Sunday, September 02, 2007

Sportin a New Hat

Caleb, Grandma, Aunt Rachel and I went to the mall yesterday to do a little shopping. I got Caleb this cute hat (among other things) and it only cost 19 cents!! Now that is a bargain! I think it looks pretty cute on him but of course I think everything looks cute on Caleb.

Tuesday, April 03, 2007

Easter Egg Hunt

While we were visiting MeMe & PaPa we decided to have a little Easter Egg Hunt for Caleb. I hid some eggs on the back patio and Caleb just rolled around in his stander finding all the eggs. It was just a fun game for him, picking eggs up and putting them in the basket. He wasn't crazy about the sun in his eyes so we had to get his shades out of the car. MeMe & PaPa enjoyed seeing Caleb in his mobile stander, he has really gotten good at maneuvering it around to where he wants to go. Caleb had a great time at MeMe and Papa's this weekend. All the attention really wears him out. He took some of the longest naps while we were there, why doesn't he do that at home? I could get so much done if he napped like that here! Anyway, he was the center of attention for 4 days and he loved it (of course he is always the center of attention).

Thursday, February 22, 2007

Three Musketeers

Watch out world, here comes Caleb, Ethan, and Bryce! The Three Musketeers had a playdate at the mall this morning and it was very eventful. Bryce was Mr. Independent and insisted on going into almost every store, especially the jewelry store. Caleb was kinda grouchy and tired, he cried the entire time. Ethan just went with the flow, very laid-back and content. It was quite a sight with 3 little boys rolling around the mall in their mobile standers. Fellow shoppers didn't know what to think about our boys. It was a very busy morning for us all. Caleb was exhausted and fell fast asleep before I even got on the highway. I am so glad to have found these other moms and their boys. I've only just met these ladies but they have already been a huge blessing to me. It is hard having a child with special needs but connecting with others really helps to lighten the load. Thank you Ladies!

Wednesday, January 24, 2007

Caleb's New Wheels!

Check out Caleb's new wheels! This is a mobile stander. It works like a wheelchair but Caleb is standing instead of sitting. He is strapped in so that he has plenty of support. This mobile stander will allow Caleb to be upright and eye-to-eye with his peers instead of being on the floor looking up. We just got it yesterday so Caleb is still learning how to make it go but he has already pushed himself forward and backward several times. He is so smart! He claps for himself every time he makes it move. I'm sure some of you are wondering if this means that Caleb will have to have a wheelchair in the future. We don't know the answer to that question, no one does. The jury is still out on what Caleb will need. It is certainly possible that he will need a wheelchair for some things but we can't say anything for sure. Caleb is constantly surprising us so who knows what he will be able to do. We are so excited that he has this mobile stander, it is going to open up a whole new world for Caleb (and new things to get into!). We are anxious to see him wheeling all over the place and being more independent.
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