Wednesday, March 31, 2010

Caleb's forearm crutches

I mentioned awhile back that Caleb's school ordered him some forearm crutches to try, well here they are!  He tried them for the first time at school today.  I wasn't there so I didn't get to see him but his wonderful teacher took a couple of pictures.  Thank you Ms. Kim!  I'm not sure how he did with them since it was his very first time to try them but boy he sure looks good!

I would like to point out that when we were at Spina Bifida clinic a few weeks ago, I told the physical therapist that Caleb was getting forearm crutches from his school.  She looked at me and told me that he wouldn't be able to do it, so I shouldn't get my hopes up.  I've learned to take what this particular PT says with a grain of salt because she is the same PT that fought me when I wanted to get him braces at 2 years old.  She told me that he wouldn't be able to do it and he proved her wrong.  I believe that Caleb is about to prove her wrong again!

I'm sure these forearm crutches will be difficult for him but how do we know what he can do if we don't try?  I just want to give him as many means of mobility as possible.  This is one amazing kid. 

Running errands with Benjamin

I had to get our car inspected today and the shop had a kids area with a table for kids to drive cars on.  Benjamin loves cars and he had more fun driving the cars all around this table.  And of course, I had my camera with me so I took a few pictures.  Is it sad that I take my camera with me to get the car inspected?  You just never know when a good photo opportunity will present itself.   

That little stinker sure is cute!

It has been really warm this week in Texas so I dressed Benjamin in some cute little shorts today.  How stinkin' cute is this kid!?  The shorts crack me up because they are 12 month shorts (Benjamin is 15 months) and they are huge on him, they go all the way to his calves!  He's just so tiny, around the 3rd %tile for height and weight.  He may just be a little guy.

Sunday, March 28, 2010

SBA Spring Picnic

Yesterday was the annual Spina Bifida Association Easter/Spring Picnic and Egg Hunt.  It was absolutely gorgeous weather and both boys had a blast.  You can also see pictures from 2009 and 2008.
 Benjamin was a little apprehensive about the bunny at first but quickly fell in love.  He actually let the bunny hold him, which I could not believe.  Anytime the bunny walked by, Benjamin would just light up and start pointing.  Terribly cute.

This park is at the hospital that Caleb goes to for Spina Bifida clinic so the park is wheelchair accessible.  It's a beautiful park and Caleb always had a great time there.  He was so busy going all around the park that I didn't really get very many pictures of him.

It looks like Benjamin is posing in this picture.  He had so much fun being outside.  He loved it.

Going down the slide...with daddy's help.  Look at that smile, now that is a boy who's having fun!

A Benjamin photo collage.  I recently discovered some fun things I can do with pictures in Picasa so I'm having some fun with it.

Benjamin isn't walking yet on his own but he has gotten to where he really likes to walk around with his hands held.  I don't think it will be too much longer before he takes some steps.  I'm in big trouble then!

I was so proud of Caleb here, he was walking up this ramp by just holding on to the railings.  Glenn wasn't helping him at all.  Caleb wanted to do it all by himself and he did.  I can't believe how strong he has gotten.  A year ago this boy was wearing leg braces that started at his hips (click here for pics), and now he is doing amazing with just AFO's.  I am truly blown away by his progress.  I took a couple of videos of Caleb walking up/down this ramp so you could see what is possible (again Facebook friends will have to go to the blog to see videos)

Isn't that amazing!  I'm so excited for him.  It's just wonderful.  Another thing I am excited about is Caleb is going to be starting aquatic therapy in a couple of weeks.  It's something I've been wanting to do but it can be quite pricey and with therapeutic horseback riding we just can't afford to do it all.  Anyway, I found a somewhat local hospital that offers aquatic therapy for kiddos with special needs...and it's FREE!  I'm so excited about it.  I think it is going to be really great for Caleb.  So stay tuned for some pictures of that in a couple of weeks.

Tuesday, March 23, 2010

Words used to describe Caleb:

I follow a lot of blogs, blogs made by amazing mom's who have been blessed with a child with Spina Bifida.  I learned something today from one of the blogs.  It was about the vocabulary we use and the meaning behind the word.  Specifically she was talking about the word "disabled".  Now this is a word that I have used many times, not because I like the word, but because I'm not always sure what word to use.  It is a word commonly used to describe Caleb and countless other people.  It's not something I would even normally think about...until I read the definition.  Here goes:

Main Entry: disabled
Part of Speech: adjective
Definition: incapacitated
Synonyms: broken-down, confined, decrepit, disarmed, hamstrung, handicapped, helpless, hurt, incapable, infirm, laid-up, lame, maimed, out-of-action, out-of-commission, paralyzed, powerless, run-down, sidelined, stalled, weakened, worn-out, wounded, wrecked
Antonyms: able, healthy

This is a word used to describe MY son.  "Incapacitated", really?  That doesn't sound like Caleb at all.  And look at the synonyms.  My heart breaks over these words used to describe someone so precious to me.  These words do not define my son.  If you know Caleb at all you know that he is anything but "helpless", "powerless", "weakened" or "wrecked".  And "incapable", please!  And the antonyms are used to describe what he is NOT.  My son IS able.  My son IS healthy.

Just for fun I looked up the word "handicapped" which I am so not a fan of:

Main Entry: handicapped
Part of Speech: adjective
Definition: thwarted
Synonyms: balked, blocked, burdened, checked, crippled, curbed, deterred, disabled, disadvantaged, encumbered, foiled, hampered, impeded, limited, mentally disabled, obstructed, physically challenged, physically disabled, restrained, restricted, stymied, wounded
Antonyms: aided, helped, supported
Again, these words do not describe Caleb at all.  I had a lesson in vocabulary today and it will forever change the words I use from now on.  I will not use these words again.  Words are very powerful and we take for granted the impact that they can have.  Lets use better words people!  Caleb is very ABLE, independent, resilient, determined, strong, and healthy.










Monday, March 22, 2010

5 years ago today...

....Glenn and I were sitting in a doctor's office having our world turned upside down.  I was 17 weeks pregnant at the time and we were receiving the news that our baby boy had Spina Bifida.  I remember that day so well, it's hard to believe that it was 5 years ago.  As I was getting ready to make this post, I was thinking about that day in the doctor's office and how awful I felt and how scared I was.  You can read "Caleb's story" if you want to know about the day we found out about his diagnosis or if you want to read about his arrival into the world.  I was going to make this post all about how terrible that day was but I've changed my mind.  Instead I want to talk about how wonderful Caleb is and what a tremendous blessing he is.  That boy brings me such joy.  I am overcome with pride as I watch how hard he works and I see how incredibly smart he is.  He is truly amazing and an inspiration to me.  I am blessed to be his mother.  I thank God all the time for Caleb and for the peace He has given me.  I could not walk this road without Him leading me and sometimes carrying me.  God is good.

Here is a little piece of the joy that Caleb bring us.  We have been listening to a Veggie Tales CD in the car lately and yesterday we managed to get a video of Caleb singing one of the songs (Facebook people will have to go to the blog to see the video):


Here are the words to the song Caleb was singing:

"My God is so Big, 
So Strong and So Mighty
There's Nothing my God cannot do"

There is such truth to those simple lyrics.  God is so big, so mighty, and there is absolutely nothing that He can't do.  Praise God for who He is, for His faithfulness, for His love, and for His son.

Sunday, March 21, 2010

15 months...really?!

Well my baby is officially 15 months old today.  Is that really possible? That can't be right.  It goes by so fast.  So what is Benjamin up to these days?  Well he is the biggest mama's boy I've ever seen, the kid can't get enough of me, even though he is with me ALL day.  He LOVES to eat, he wants to eat all the time. He loves to play with cars and trains.  He is a chronic thumb sucker, but only the left thumb, I guess the right thumb doesn't taste as good.  He absolutely loves to be outside.  He loves going for walks in the wagon.

He still drools constantly, there is no end to the amount of drool this boy can produce.  You wouldn't believe the number of bibs we go through in a day.

And he appears to have very expensive taste when it comes to cars!

He's super cute and super sweet.  He's my little cuddle bug.

Friday, March 19, 2010

Playdate at the Park

Caleb met up with his buddies, Bryce and Nathan for a playdate at the park today.  It's been a long time since we've been able to get all of our boys together so it was long overdue.  We met at the local accessible park.  There's nothing like seeing 3 four-year-olds in their wheelchairs totally taking over a playground!  Watch out everyone!
Caleb was looking at this little boys shoes because he has those exact same Lighting McQueen shoes.  Caleb thought it was so funny that another little boy has those shoes.

Caleb and Nathan

Caleb checking out his reflection in the fun mirror.

I had Benjamin in the Moby wrap most of the time but he began to get restless and wanted to get down and explore.  

I've mentioned that Benjamin does not like to touch grass....well today his desire to explore overpowered his grass phobia.  He was on the move!

"What is this strange stuff on my hands...I don't know if I like touching this grass after all."

"Hmm, what's this?  This looks like a fun toy."

Bryce, Nathan, and Caleb playing in the sand (volleyball court).
  
The playground is right by a train track and a train comes through there about every 30 minutes.  Caleb and Bryce decided to cover their ears as the train went by.  I was so proud of Caleb, there was a time when the noise from the train would have really upset him. He did great today, with all 3 trains that went by while we were there. 

We had a great time at the park.  Benjamin and Caleb (mom too) are exhausted, both boys are taking naps now.

Thursday, March 18, 2010

Boys and their trains

Both boys were back in Caleb's room this afternoon playing with trains.  Perfect picture-taking opportunity.

 Benjamin is so cute when he plays.  He loves anything that has wheels on it, monster trucks, cars, and trains.  He just pushes the train back and forth on the track.  It's so stinkin' cute!

Caleb doesn't particularly like to share his train track with Benjamin so he builds his own to play with (of course that doesn't guarantee that Benjamin will leave him alone).  Sometimes Caleb just wants to play by himself so badly and it is almost impossible to keep Benjamin away from him.  Caleb will often go back into his room to play, hoping to have a few minutes without Benjamin taking all of his toys.  Don't feel too bad for Caleb though, he has been known to snatch toys right out of Benjamin's hands too!

 Benjamin was quite aggravated in these pictures. His train kept falling off the track and he would get so frustrated!  I guess a 15 month old doesn't have a lot of patience.

Ah, there's a small smile.  He's a toot!

Spring Break Pictures

Caleb has been on Spring Break all week so I've been trying to keep him entertained.  Luckily Texas has been blessed with some gorgeous weather so we've been able to spend some time outside.  Here are some pictures of Caleb in the driveway with some sidewalk chalk.
He takes his art work very seriously :).

Caleb actually took this picture and I thought it was cute.

These were taken at horseback riding yesterday.

We have a playdate with Bryce, Nathan, and Ethan tomorrow at the park.  I'm excited to get our boys together because it's been a really long time.  I'll be sure to take lots of pictures!

Friday, March 12, 2010

The Letter

I wanted to share will all of you a letter I wrote to the perinatologist (high-risk pregnancy doctor) I had when I was pregnant with Caleb.  This is the doctor that told us that our baby boy had Spina Bifida.  I've mentioned before that Glenn and I were told horrible things about Spina Bifida that day, and were "offered" termination several times.  I've read that somewhere between 70-90% of babies with Spina Bifida are terminated and I wonder how many of those are because the parents were told very misleading and out-dated information.  It has been on my heart to write this doctor a letter for some time.  I just want him to hear how wonderful Caleb is.  My prayer is that the next time he has to tell expecting parents that their baby has SB, he will remember Caleb and offer them some hope.  Glenn and I were given no hope that day in his office.  I also included a picture of Caleb with the letter.  I don't know if this letter will  make any difference.  But just maybe this letter will save a life.

Here is the letter:

On March 22, 2005 my husband and I were in your office meeting you for the very first time. I was about 17 weeks pregnant and had been referred to you by my OB because my AFP results were abnormal, showing a 1 in 10 chance of Spina Bifida. On that day you had the unfortunate job of telling us that our baby boy had a neural tube defect, specifically myelomeningocele, with moderate hydrocephalus. You told us that our baby boy would have a significant physical disability, would most likely be mentally challenged and might not even survive. As my husband and I were trying to absorb this devastating information you offered termination as an option. For us, termination was never an option, my husband and I never even discussed it. We, without hesitation, wanted this baby regardless of whatever might be “wrong” with him.

Caleb was born on August 9, 2005. He is now 4 ½ years old and is the most amazing little boy. He walks with AFO's and a walker, and has gotten strong enough that we will be trying forearm crutches soon. He does use a wheelchair for longer distances. He is incredibly bright. He knows his letters and numbers. He writes his name all by himself. He will be starting kindergarten next fall. He absolutely loves a good knock-knock joke. His laugh is contagious. He is the most determined little boy I have ever seen. He is super sweet and an absolute joy to those around him. He is truly an inspiration to me and my husband, I can't imagine this world without him in it. Caleb is not the exception. We know dozens of children with Spina Bifida and they are amazing kids.

Looking back on that first appointment and knowing now what we know about Spina Bifida, we do not think that termination should have been offered as a first option. Spina Bifida is not terminal, 90% of children born today with SB will survive well into adulthood. The vast majority (80%) have normal IQ scores. I hate the thought that many parents may choose termination based solely on what their doctor has told them about Spina Bifida, which is usually a worst case scenario.

My purpose in writing this letter is not to make you feel bad for the information you gave us or for offering us termination. I have talked with dozens of mom's all over the country that had very similar experiences with their doctors when the diagnoses of Spina Bifida was given. My hope is that you will remember this letter and think of Caleb the next time you have to give expecting parents the news that their precious child has Spina Bifida. Finding out that there is something wrong with your baby is absolutely devastating. I will forever remember that Tuesday in your office where we received the news. I was terrified. If I had only known how wonderful Caleb would be and what a tremendous blessing he would be, maybe I wouldn't have been so scared. While the journey is difficult at times, the good far outweigh the bad.

Please feel free to give my information to expecting parents who are faced with this diagnoses. I would be thrilled to tell them all about my amazing son, Caleb.

Video of Caleb making Benjamin laugh...again!

No one can get Benjamin to laugh the way Caleb can.  Here is a cute video of big brother cracking his little brother up.  Those of you reading this on facebook will have to go to our blog to see the video.

Wednesday, March 10, 2010

Benjamin meets a crane fly

Benjamin loves to play over by the window.  This morning he was playing with his car on the window sill and he was just talking like crazy.  I could tell that something had gotten his attention so I decided to go check it out.

I believe this insect is called a crane fly.  It kinda looks like a giant mosquito but they seem to be harmless.  Benjamin was very interested in this crane fly.
It's hard to see the crane fly in this picture but Benjamin is politely showing the insect his blue car.

Benjamin getting up close and personal with the bug.  I just love that cute little finger.  He was absolutely fascinated by this large flying creature.  It's so cute to watch him and see him learning.  His reaction to everything is so genuine.  I've seen so much cognitive development recently.  He really seems to understand a lot of what we say to him.  He points at light switches and says "ah", for "on".  It's so cute!  He has got such a big personality too, it cracks me up.  I wish you could see him when I try to make lunch or dinner, it's pitiful.  Anytime I am in the kitchen he is suddenly starving to death and begins to throw the biggest fit.  He'll crawl into the kitchen (fussing the whole way) and he'll lay his head on my foot (and suck his thumb) while I'm trying to cook.  I really need to get it on video because it is so ridiculous!

Saturday, March 06, 2010

Day at the Museum

We took the boys to the museum today.  I haven't been to this museum in forever and it looks nothing like I remember.  It has totally been redone and it was a lot of fun.  We decided to just buy a membership so that I can bring the boys anytime.  Here are some pictures:
A giant Tinkertoy!  Caleb had an absolute ball at the museum.  The kid could barely contain himself.  I was so impressed by all the things they had for kids to do. 

Playing in the sand...we had to practically drag Caleb away from this.

A circuit center, you could hook the light switches up to different things and then turn them on.

Benjamin was just along for the ride, but he did seem to enjoy himself.  By the way, his eye surgery went great this week.  He did wonderful.  The stint will stay in the tear duct for 6 months.

This was inside the planetarium.  Caleb loved this!  Benjamin actually seemed to enjoy it to.  He just sat and watched the stars on the big screen.  

The museum had a big cattle exhibit.  

Caleb watching the trolley.  I think he would have sat there for hours watching that trolley go back and forth.

This is inside the new Children's Museum.  Very cool. 

Caleb playing with trains inside the Children's Museum, even though he has these trains at home.  It must be more fun at the museum.  

And this is a bunch of glass in Caleb's car seat because some fool decided it would be a good idea to break into our car and steal Caleb's DVD player along with several movies.  They stole a cheap no-name DVD player that they will probably get about 6 dollars for at a pawn shop!  All this in broad daylight!!  Good grief.  
Oh well, the museum was still fun. :)
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