Fitted for KAFO's

Three months ago Caleb saw his ortho doctor and I asked for KAFO's (Knee-Ankle-Foot-Orthosis). I wanted them because I could see that Caleb was motivated to walk, he wanted to walk, but his knees just can't take him more than a few steps. The ortho fought me a little on the KAFO's at that time, and gave us knee immobilizers instead. The knee immobilizers seemed promising at first but I quickly realized that they weren't the right thing for Caleb. It seemed like they hindered more than they helped.

So today we went back to ortho and I had already decided that I wasn't leaving there until Caleb had been fitted for some KAFO's. Mama Bear was ready to fight...well I didn't have to. Ortho agreed and Caleb was fitted for KAFO's and a new pair of AFO's (he has outgrown his current pair).

He was fitted for AFO's first.

Next came the KAFO fitting. This took quite some time. Thank goodness for the Ipod.

Cutting the cast off.

A perfect mold of his leg. Pretty cool.

We pick up the braces at the end of May. I can't wait to see how the KAFO's turn out. 

Semi-clinic visit

Caleb had a very quick semi-clinic visit on Friday. I hesitate to even call it a clinic visit because we only saw the doctor and PT. In and out in less than an hour. I had called at the beginning of the summer to schedule Caleb for a full clinic visit but they didn't have anything available until September. Since Caleb had TC surgery in April they wanted to squeeze him in for a short visit to look him over. I was glad to go and get their opinion on how he was doing and I was also looking forward to another opinion on his swollen right knee.

While we waited, Caleb read from his critter flashcards that he got at Target for $1. 

Benjamin chose to eat snacks while we waited.

Overall it was a good quick visit.  The doc and PT were actually pretty pleased with Caleb's leg movement and strength. They took a look at his knee as well. The doctor thinks it is most likely a small fracture that just didn't show up on the original x-ray but could possible be visible on the x-ray we are having done next week. We follow-up with ortho next Friday so we'll see if anything shows up on that x-ray.  In the meantime, we still can't let Caleb crawl around or put any real pressure on those knees.  

Since we were done with the appointment so early, I took the boys across the street to the park.

Benjamin loves the train.

Love that face.

Love that face too.

Picnic at the playground, New AFO's, and a worried momma

I know that is such a random title for a blog post, but it sums it all up, so I went with it.  Last week Caleb was scheduled to pick up his new AFO's.  The clinic we go to has a really nice accessible playground so I decided to take the boys there for some playtime and a quick picnic before Caleb's appointment.

Benjamin cautiously checking out the shaky bridge.

He determined the bridge was safe to cross so he bolted!

(notice Benjamin's t-shirt, it reads: "I rode the Wonderland Express", I got it for him at Morgan's Wonderland since he enjoyed the train so much)

The boys pretending to be train conductors. 

Caleb working hard to push up the ramp.

He made it!  A victorious grin!

Benjamin standing by the train's smoke stack.  This boy loves trains.

 After our little picnic in the park we headed in to get Caleb's new Camo AFO's.

They came out really cute, I think he was pretty proud of them too.  

So, I covered the "picnic at the playground", and I covered the "new AFO's", now I guess I need to explain the "worried momma" part.  I've noticed in recent weeks that Caleb has been struggling to walk a bit.  His right foot is turning out more and he just seems more clumsy.  He gets fatigue really quickly when walking and complains that his legs are tired even when he hasn't been walking much.  His knees are giving out on him and he seems to be supporting himself more with his arms when he walks instead of letting his legs carry his weight.  He will walk a few feet and then he wants to sit down.  His PT at school noticed it too.  I knew his AFO's were too small and I had a lot of hope that these new AFO's would offer him a bit more support.  Granted he has only had the new AFO's less than a week but I really don't know if they are helping much.  And some days are better than others, some days I think..."well ya know, maybe it's not so bad..." And then other days I know it is bad.  Of course I am thinking it is tethered cord symptoms pushing through.  Tethered Cord.  The thing all of us SB parents know is there but we hope and pray that our child never has any symptoms.  I fear Caleb is having symptoms.  So I went back and viewed videos of Caleb walking from months ago, even a year ago and I definitely see a decrease in function and strength.  And then I started wondering if the 2 UTI's Caleb has had recently could be related to tethered cord??  I hated to make that phone call to the neurosurgeon.  I felt like by making that call I was saying without a doubt that Caleb needs surgery.  It made it feel more real and I don't want it to be real.  But of course there is a process to determining if Caleb is truly showing signs of tethered cord.  So, I called.  It looks like the next step will be a full MRI (not scheduled yet) so that the neurosurgeon can get a good look.  So we will start with that and see where we go from there. 

 One day at a time.

"For I am the LORD, your God, who takes hold of your right hand and says to you, Do not fear; I will help you."

Isaiah 41:13

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

Matthew 6:34

Ortho Clinic: Fitted for new braces

Caleb had Dental and Ortho Clinic today.  Caleb barely survived seeing the dentist. He did really well with the cleaning and the exam but he was NOT a fan of the x-rays.  He just couldn't bite down on those x-ray thingies (that is the actually medical term) without gagging.  So after being somewhat traumatized, the dentist gave Caleb this:

 The playdough came in handy as we waited to see the Orthopedic staff.

Getting a bit silly with playdough.

Reading a book as we wait. 

 Let me just tell you that this kid can read.  Really well.  I have been blown away by how well he is reading.  This time last year he was struggling to learn even a handful of sight words and now he can sit down and read books all on his own.  It is so fun to listen to him read.  I just love it.

From books to video games....more waiting.

 Time to get fitted for some new AFO's!

Caleb was really in need of some new AFO's.  He has grown so much that his current AFO's were so short that they weren't doing enough to support his legs fully.  I had noticed that his knees were bending in a bit when he walks lately and I was starting to get a bit worried but I was told today that it is likely due to the fact that his AFO's were too short.  His news ones will solve that problem.

 So the big decision:  What print/pattern did Caleb want for his AFO's this time?

Is that such a boy thing or what!  He almost went with the American Flag pattern (he is very patriotic) but then decided on the camo instead.  It will be a few weeks before we pick up the new braces, I'll post pics when we get them.

I want to brag about Caleb for just a bit.  He is walking almost 100% of the time at school.  He takes his wheelchair into the school and parks it by the classroom and it stays there until the end of the day.  He is walking (with his walker) the rest of the time!  And they do A LOT of walking during the day because they go to different classrooms, the cafeteria, the gym, outside, and he goes to the nurse 2x a day.  He is walking for all of that!  I am just amazed at his endurance.  When he was younger, my biggest hope was that he would be able to navigate around a classroom with braces and a walker and then use the wheelchair for everything else.  He has totally exceeded my hopes.  I truly never dreamed that he would walk as well as he does.  I just never expected it.  I think he will always need his wheelchair (and I am 100% okay with that) but I'm so thankful that he has this other option as well.  I'm just tickled to death.  I'm so proud of that boy.

Ortho Clinic

Caleb saw the orthopedic surgeon this afternoon.  The staff had nothing but praise for Caleb.  They were all very pleased with his progress and how well he is walking.  It's always nice to get a good report.  I needed that today.

We ran into some of Caleb's best buddies while we were there.  And I finally got to meet Brittany and her daughter Brooklyn.

 How cute is this picture of Bryce, Nathan, and Caleb?  

 Bryce and Caleb

 Thankfully, they have Mario Kart in the waiting room.  This kept Caleb busy while we waited.  He loves Mario Kart!

Caleb has outgrown his AFO's so he was casted for some new ones today.

 

 

It will take about 3 weeks before we get his new braces.  He decided to have a baseball put on his braces this time, and they will have blue straps.  He is very excited about getting his new "baseball braces".

Thank You Notes, the Dentist, and Glenn turns 30!

This is a somewhat random post, covering a few different things.

I usually just write Caleb's thank you notes for him but I figure that he is old enough now that he can at least sign his name on each card.  I think it is important that Caleb know who gave him a gift and what they gave him.  At the party he opened gifts so fast that he had no idea who had given him what.  So I filled out the Thank You cards, told him what each person gave him, and then had him sign his name at the bottom.

He actually did pretty well.  Some of them are neater than others but he really tried and I was proud of him for taking his time to write his name carefully.  Plus, I figure this is good practice for when he starts Kindergarten in about 10 days!!!  I can't even talk about that right now, my baby starting Kindergarten.  I have many a worry and would ask that all of you pray for Caleb (and me).  I know that he is going to do amazing and he will have so much fun.  He's not worried, so I guess I shouldn't be either.

Caleb had a dentist appointment earlier this week.  Can I just say how amazing he is at the dentist?  I am certain that there are kids that scream the entire time (I think Benjamin will likely be that kid) but Caleb does perfect.  He just lets them do what they need to do without complaint.  We got a good report from the dentist, no cavities!

And finally, Glenn turns 30 years old today!  I sort of invented a new cake: "Mocha Tiramisu Tri-Layer Cake".  Here is a picture:

Doesn't that look so pretty?!  It came out quite tasty.  I was a little worried about it because I modified another recipe quite a bit so I wasn't sure how the end result would be.  The original recipe called for Coffee flavored liqueur.  Well I didn't really want to load the boys into the minivan and take them with me to the liquor store.  Something about that image didn't feel right to me :).  And we don't drink so I just don't have anything like that in the house.  So, I came up with my own idea and bought a bottle of the Starbucks Mocha Frapp drink and used that in the recipe.  It actually came out very good.  Glenn said it was yummy and since it's for his birthday that's all that matters.  Happy 30th Birthday to the best husband and daddy on the planet!

Spina Bifida Clinic

Well today was Spina Bifida Clinic day, and for those of you that have kiddos with SB you know what a LONG day clinic days can be.  We are blessed to have such a wonderful hospital in the metroplex that focuses on kiddos with orthopedic issues.  The morning started with Caleb's dentist appointment.

Caleb does absolutely AMAZING for the dentist.  I could not be more proud of him.  No one likes the dentist but he is such a trooper and does great!  The staff is so great and really tries to make the kids feel comfortable, the dentist let him try out some of the equipment which Caleb thought was really cool.  All-in-all Caleb's teeth look pretty good, no cavities!  She said he would likely need braces one day but that's no big deal.  He's already got braces for his legs so he'll just have braces in his mouth too!

We spend a lot of time in a little room during clinic days while a dozen different people come in a look at Caleb so we have to be creative to keep the kiddo entertained.  A small container of playdough did the trick today.  We made a snowman.  

Caleb saw a variety of professionals today, therapists, orthotists, orthopedic surgeon, dietitian....and they were all pleased with his progress and how well he is doing.  We got an A+!  Caleb did great today, he only cried when they did some blood work...but who can blame him, that hurts.

Caleb walking with new AFO's

Caleb got his new AFO's earlier this week. This is a video of him trying them out for the very first time. He did amazingly well. He was supporting all of his weight, I just held onto a belt loop in case he fell. It is hard work for him and he moves slow right now but I'm just amazed. Hopefully with practice he will get stronger and faster. It is just so wonderful that there is another avenue for mobility for him. I just want him to have as many options as possible. I will continue to post videos as Caleb improves. Thank you to all of you that pray for him and take the time to visit this blog. I know that there are many of you that I have never met and will likely never meet but you care about Caleb because you also have a child with Spina Bifida. You rejoice in Caleb's progress just as I rejoice in your child's progress.

My boys

Benjamin is 5 months old today. It is really going by so fast. He is getting bigger everyday...and more and more rotten! I love this picture of him. That face is just so precious.

We took this video of Caleb tonight on the swing. He was having an absolute ball on that swing. He loved spinning around, he was laughing so hard. We got some encouraging news earlier this week regarding Caleb's mobility. We met with an orthopedic surgeon and some therapists. They wanted to see how Caleb is doing with his braces and walker. They had him walk with both knees unlocked and he did very well so they took his braces off completely to see how he would walk with no braces on at all. He used his walker of course and it was hard for him but he was actually able to take several steps. Glenn and I were absolutely blown away. We had no idea that he could do that, I've never tried to have him walk using his walker without braces. So he got fitted for some AFO's, they go from the calf down to the feet and we are going to start working on Caleb walking with those using his walker. I assumed the next step would be braces that started at the knee but it appears that he is doing so well that those won't be necessary...we get to skip those altogether! We are just so proud of him. We get his new AFO's in a couple of weeks. I'll be sure to post video when we start working on walking with those. I never thought he would have come this far, I am truly blown away. God has given Caleb abilities that I didn't expect. God is good...all the time.

Easter Picnic

Yesterday was the annual Easter picnic, sponsored by the local Spina Bifida Association. The weather was absolutely gorgeous and the four of us had a great time. This is a wonderful park because it is designed for kids with mobility issues so there are ramps that allow Caleb to wheel right onto the play equipment. It is wonderful, I wish all playgrounds were built like this. It was a fun-filled day with face painting, an egg hunt, and a picnic. Caleb loved seeing the Bunny and was quick to give her a hug and follow her around the park. I always enjoy getting Caleb around other kids that have Spina Bifida, he is able to see other kids using wheelchairs and walkers and wearing braces. He always seems interested when he sees other kids in wheelchairs. Benjamin slept through most of the festivities but he did wake up at the end and I was able to get a couple of pictures of him.