Showing posts with label Spina Bifida. Show all posts
Showing posts with label Spina Bifida. Show all posts

Monday, June 20, 2016

How to deal with contractures

So I need some advice on how to deal with this ongoing problem with Caleb's legs and feet. This isn't a new problem by any means, it really started several years ago after his tethered cord release. While this isn't a new issue, it has gotten worse over the last couple of years. We even did a full MRI last summer because I was convinced he must be re-tethered. Results came back stable.

This is as straight as Caleb's right leg will go. There is so much tightness at the back of his leg and knee. It took quite a bit of effort just to get it this straight. 

His right foot. 
It just kinda curls and you can't really get it to sit flat. It naturally flexes up and has gotten so tight. The look of his feet really bother him.

His left leg isn't as tight as the right but it is still a mess.


Left foot.
His toes do a weird thing on this foot.

This is the "go-to" position for his legs when he is sitting. They just draw up like this.

Same thing when he is is on his belly.

Caleb's legs never relax. Never. He has spasms in his legs regularly where they just jerk around on their own (usually the worst when he first wakes up in the morning). Even we he sleeps his legs jerk up. He sleeps all night with his legs so tight in the worst positions. Trying to get them straight is like trying to straighten a metal bar. They won't budge, they fight the whole way.

I have tried everything I can to help and I'm losing this battle ya'll. I put his KAFO's on him to force those legs as straight as I can get them. We have tried several things to use overnight while he is sleeping but because his legs are constantly fighting against begin straight, everything we have tried (night bracing, knee immobilizers, etc) all leave horrible marks on his legs and feet.

We see his orthopedic surgeon next week and I want to push for some kind of intervention. I'm tired of fighting a battle I can't win and I see how much this is starting to bother Caleb. I'm not sure what is the best thing to do here so I'm asking you guys to share your experiences. I just refuse to accept that this is just how things are and there isn't anything I can do to fix it. I'm not sure if tendon release is the way to go. I don't know if Botox will do a thing for this. 

Have any of you won the battle against contractures? Please share so I can go to his appointment next week with a plan in mind. 


Thursday, May 19, 2016

Canine Companions for Independence Graduation, Lonestar Chapter

The Lonestar Chapter of CCI had their graduation last Friday. Even though we have had Hallow since February, we were invited back to participate in the graduation ceremony. Hallow's puppy raiser, Joan, flew all the way from California to be here for the graduation. We were so excited to meet the woman who raised Hallow for the first 18 months of her life.

Graduation day started with a brunch.

We got to meet Joan in person for the first time. It was so fun to sit with her and go through Hallow's puppy book together. Hallow was Joan's 4th puppy to raise for CCI. She is raising puppy #5 now! There were people at the brunch that have raised as many as 18 puppies for CCI! Puppy raisers impress me so much. They give 18 months of their lives to a dog that they will eventually hand over to someone else. That is a beautiful act of love and generosity.

Joan was so kind to bring gifts for Hallow and the boys. Benjamin loved the Coast Guard coin she gave us.

The graduation ceremony was sweet and emotional. They showed videos of all the graduates with their dogs. Each puppy raiser meets the graduate on stage as they hand over the dog to the deserving recipient. It is very moving and caused a number of tears. They had boxes of tissues on every row.

The whole crew with Joan. We were so thrilled to have her here. It was such a blessing to meet her and Hallow was so excited to see her. It was quite the reunion. 

Love this.

Earlier in the week we had to head up to the CCI training center for interviews.
We did an interview for a local news story as well. I swear, I am becoming pro at interviews.
As far as I know, the story hasn't run yet, but I'll post the link once it does.

It was a great day and we were so blessed to meet Joan and to be there to witness other kids and adults receive their CCI dog. I can't say enough about Canine Companions for Independence and all they do. They are truly a great organization with some really great dogs. We love Hallow and can't imagine life without her. 



Wednesday, April 27, 2016

TexasFest for CCI

We get to do the coolest things ya'll. I'm always humbled by all of the fun things we get to do, things that we would never even know about if it weren't for Spina Bifida. We were invited to represent Canine Companions for Independence at TexasFest, a local gala put on by The Irving Healthcare Foundation. The foundation raises money for CCI and other organizations.



The boys watching an armadillo race....only in Texas ya'll.

Caleb was brave enough to touch the dillo.

Since it was a CCI fundraiser, we had our girl Hallow with us. She got quite a bit of attention.

Pretty girl.


There was a magician that the boys loved. He did several slight of hand tricks that had them mesmerized and somehow he got one of my rings into a sealed envelope. Mind blown on that one.

Isn't she pretty in her collar and flower? I finally have a girl to buy pretty things for.

And finally, a rare family photo. 


Friday, April 22, 2016

1,000th Blog Post!

This is my 1,000 blog post ya'll! Seems like a major milestone to recognize.

The very first blog post was way back in November of 2006.


Caleb was just over 1 year old. I originally started the blog as a way for family and friends to stay up to date on Caleb. I had no idea I would still be blogging almost 10 years later with 1,000 posts under my belt. I had no idea the people this blog would bring into my life. I had no idea my blog and my family would impact others. Who knew?

For fun I looked at my blog stats to see what words or phrases have been searched that lead folks to my blog. Not surprisingly "spina bifida" was the number one search entry. I love that people find my blog while searching under spina bifida. I love that they see Caleb living life with SB. 

A few of my most viewed posts are:

(I reviewed two different TiLite chairs and their features/options)



 (this was a very popular post in October, SB Awareness month)


And my personal favorite....

I've been on the scenic route with Caleb for over 10 years now and I still love the view.

A big thank you to all of you that take the time to read our blog. It has truly become an online scrapbook of our lives, recording the good....and the not so good. I've always tried to be honest and share my heart along with the everyday things. I've shared the loss of 2 pregnancies. I've shared the ups and downs of having a child with Spina Bifida. I've shared my heartbreaks and my rejoicing. I've shared our lives. Thanks for being a part of that. 

1,000 blog posts. I can't believe it. Here's to 1,000 more.


I would love to hear from you folks. What is your favorite blog post? How did you find this blog? How long have you been following our family?


Wednesday, April 13, 2016

NWBA Nationals in Kentucky

Last week we made the long (so very long) drive to Louisville, Kentucky for the National Wheelchair Basketball Association tournament.

Hallow is ready to go. Having a dog makes packing for a long trip a challenge. We had to use our roof storage rack so Hallow would have enough room in the back.

The long drive was hard for Hallow even though we stopped often. I think that much time in the car stressed her out quite a bit. At one point she climbed into Caleb's lap.

Lunch at the Cracker Barrel in Arkansas. Hallow is the queen of the "sad face" look. Pitiful.

We split the drive over two days and stayed in Tennessee for one night to rest up. The hotel pool was a great reward for the boys after spending the day in the car.

Pretty girl.

Finally made it to Kentucky. I think I have more pictures of Hallow than anything else.


Surprisingly I have few pictures of actual basketball. The team played 4 games....they lost 4 games. 

Hallow resting during the games. How cute is she in that collar? I finally have a girl to dress up!

The team all crammed into a booth together. They may have lost all of their games, but they still had a good time together.

These long trips are tough on this guy. He is very much a homebody and he hates being away from his Legos. I promised him that I would buy him a new Lego kit while we were in Kentucky. As soon as Caleb's first game was over I took him to Target to pick out a kit. Best purchase ever. He was perfectly content.

He even found a fellow Lego-lover to hang out with. These 2 spent a lot of time together during the tournament.

Dirty hands and a dirty face, all part of wheelchair basketball. 

Hanging out with this fellow SB mom was the highlight of the trip for me (and for Caleb I think too). This is Annie and her daughter Anna. I've "known" Annie online for a few years and we met briefly at Nationals in 2014 but we were able to really hang out this time. Caleb and Anna were fast friends and have already video chatted several times since we've been home.

Being a pretty service dog is exhausting. We had a constant stream of people coming up to us to meet her and love on her. 

Another stop in Tennessee on the way home.


Tuesday, March 08, 2016

More Hallow

Our sweet girl is fitting right in with our family ya'll. I had to share some pictures from the last couple of weeks.

This girl loves to sunbathe. Loves it. She loves going outside and just laying in the sun, it cracks me up.

Caleb and Hallow showing off the "lap" command.

Kisses.

Big yawn! I think we have worn her out with all of our walks and nature adventures.


She's so pretty!

Benjamin adores her. I was concerned that he would feel like Hallow is Caleb's dog and not his but it hasn't been that way at all. She has been a nice addition to our family.

She loves to play fetch and often brings the ball to us to let us know when she is ready to play. She is just the right amount of playful balanced with the perfect amount of chill. 


We have fallen into a really nice routine with her already. She is just so easy. 


Hallow joined us on Benjamin's final orthopedic appointment. It is so weird and fun to take a dog into a public building. She did great.


We've only had her a couple of weeks but she truly feels like part of our family. 
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