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

Sunday, March 05, 2017

Cast is off!

Caleb got his cast off this week! 


He had good bone growth around the break so the ortho was comfortable taking the cast off. Caleb still has to take it easy, no weight bearing at all for another month. We'll go back for x-rays in April just to make sure everything looks good. 

I'm so glad to have that cast gone. Now to wrap Caleb in bubble wrap so this never happens again. 

Thursday, February 09, 2017

Quick Update

This has been the longest week ever! The orthopedic surgeon couldn't get Caleb in until today (Thursday) so I've spent the entire week in a state of high stress and worry over this broken leg. Apparently stuff like this is common and no biggie to ortho docs. I think they forget that there is a very worried momma pacing the floors, desperate for some assurance. 

Anyway, Caleb is now sportin' a bright orange cast. He will wear the cast for 3 weeks and then we'll reassess. The ortho doesn't want to keep him in a cast much longer than that because it will only make the bones weaker. 


I feel a bit better now that we have a plan in place but this week was rough on me. I don't know why I took this break so hard. It certainly isn't the hardest thing we've been through with Caleb. Maybe I was barely hanging on and this was the thing that just pushed me over the edge. His broken leg broke my heart. I cried and cried this week. I really struggled with this one. It just felt like such a setback and it still does. I know we'll get through it. I know this is just a rough season we are in and it will pass. Thankfully Caleb couldn't care less about his broken leg. He just keeps rollin' on like it's no big deal. I wish I was able to do that!

Sunday, February 05, 2017

A Setback

I'm not going to lie, it has been a rough couple of months. Even with the great success of the SPML procedure and surviving 5 weeks in leg casts...Caleb has had several bumps in the road. He has battled 3 bladder infections in less than two months. Every time one infection clears up, another infection comes knocking on the door. We aren't sure why and preliminary testing hasn't shown any noticeable cause.

Then this happened.

See that swollen right leg? I first noticed it early Friday but didn't think much of it at the time. He has had some swelling here and there since the casts came off so I figured he may have just overworked it in therapy or something. So I iced it and had him take it easy that day. But it was worse yesterday and it felt hot to the touch. He even had some pain which was a huge red flag to me. Caleb doesn't have a lot of feeling in his legs so if he is feeling any pain at all, I know it's bad.

I took him to Urgent Care. 

Urgent Care sent us to the ER because they were concerned it was an infection in the joint.

After x-rays, blood work, and ultrasound the verdict is a broken tibia and fibula in the right leg. 
The ER did a temporary splint to support the leg until we can get in to see the orthopedic surgeon this week.

I'm heartbroken. This was pretty much my worst fear after his casts came off. We have no idea how it happened or when it happened. I suspect it happened sometime between Wednesday and Thursday but I'm not certain. He has been so careful with his legs, knowing that they are fragile. I can't think of anything that has happened in the last few days that could have caused this. We'll likely never know. I'm so very, very sad. This is such a huge setback for him. I'm guessing this leg will go back in a cast for several more weeks which only leads to his bones becoming more brittle than they already are. I'm worried that he will lose the straightness we worked so hard to get and the SPML surgery will be for nothing. There are so many "what ifs" running through my mind right now. I hate this so much. 

As usual, Caleb is taking it all in stride. He's not nearly as upset as I am. He's just been through so much the last couple of months and it has to make him weary. I know I'm weary. He was just doing so well, even walking with his KAFO's and walker. This just feels like a huge step backwards. I don't want to go backward, I want to go forward. 

I'll post more after we meet with the orthopedic surgeon this week. Hopefully we'll have a plan in place soon. For now, we'll keep doing what we've been doing....just get through one day at a time. 

Prayers appreciated. Even when I don't understand the "why" of things, I do believe in the peace that only God can give. I'm struggling to feel that peace right now, but I'll get there.


Thursday, December 29, 2016

SPML and Knee Capsulotomy: A Success!

After 5 weeks, Caleb is officially cast free! He had his final trip to Galveston this week for the cast removal.

Prior to the SPML and Knee Capsulotomy surgery, the bend in Caleb's legs was close to 70°
His legs looked like this. Trying to get them straight was like trying to straighten bent steel. Impossible.

Now his legs look like this.

From 70° to 7°! His legs are so perfectly straight. I can't believe it. 

We still have to be diligent about keeping them stretched and straight. He has to wear his KAFO's a minimum of 8 hours a day (overnight counts too). His bones are weak and fragile after 5 weeks in casts so we have to be careful he doesn't do anything that could cause a break, which means no wheelchair basketball for a bit. 

His skin looks pretty gnarly after being in casts for so long so I'll wait a bit before I share photos of his incision site. 

I could not be more pleased. I really didn't know what to expect because his contractures were so bad. I can't believe we were able to get them almost completely straight. 7° is not even noticeable. 

He's almost as tall as me!

Caleb has been such a trooper throughout this whole thing. I'm so proud of the way he handled everything. We still have work to do to regain motion and strength in those legs but now that they are straight, we've got something to work with. I'm so glad we made this decision.

I'll continue to share his progress over the next few weeks. 

Wednesday, December 14, 2016

SPML and Knee Capsulotomy Update

It's been 3 weeks since Caleb's SPML and Knee Capsulotomy surgery so I thought I would give a quick update. He had his third hard cast change yesterday and his legs look amazing!

He chose Christmas colors this time around.

Look at those straight legs ya'll! They pad the knee really well so that is why that part looks so huge. Prior to surgery his knees bent at almost a 70 degree angle. Yesterday they measured in the low 20's!! They try to get an additional 5 degrees with each weekly cast change and will continue to do that as long as we see progress. I would be tickled to death if we could get it in the teens. I am amazed by his progress. I honestly didn't know what to expect and I have been cautiously optimistic because his legs were just so bent and tight. I'm so impressed. It has not been easy on him (or us) to have both legs in casts but seeing this kind of progress has made it all worth it.

I'll continue to post pics and updates on Caleb's progress over the next few weeks. 

Tuesday, November 29, 2016

SPML and Knee Capsulotomy

If you read my last post, you know that we decided to do the Selective Percutaneous Myofacial Lengthening (a.k.a. SPML, Perc procedure)for Caleb's leg contractures. Last week we traveled to Galveston for the surgery. We went the day before to meet with Dr. Yngve one last time before the procedure. After our pre-op we tried to squeeze in a little fun by walking the pier.

I'm so thankful Caleb can be silly even when he is about to have a big surgery. I was barely holding it together but he was a trooper as always. It's so hard when you have to make these decisions for your kid. We knew it was the only option but that didn't make it any easier. 

Caleb was the first surgery of the day.

Sweet boy. I know he was nervous and rightly so. He did so amazing though....even before they gave him the Versed to relax him. 

The surgery took about 5 hours.

The surgery went fine. Caleb did great.

Because of the knee capsulotomies, Caleb had to stay one night in the hospital. They wanted to make sure his little toes were getting plenty of blood flow. 

We were released on Thanksgiving day and headed back to the hotel to rest until the following day.

The first set of casts were soft, basically just a lot of padding with layers of ace wrap. He had to keep his legs elevated as much as possible the first few days so there was a lot of lying around. 

I'm not going to lie, the first couple of days were rough. Luckily he didn't have any pain (a bonus of not being able to feel your legs) but he struggled emotionally. There were some tears. His and mine. The reality of having both legs in casts hit him hard....hit me hard too. When your kid asks, "Why do I have to go through stuff like this?" while tears run down his face you just hug him tight and let your tears flow right along with his. A solid night of sleep did wonders for his mood and he has been doing much better since we got home.

This kid. We ask so much of him sometimes. Trips like this aren't fun for him. He did great though even during the long day at the hospital while Caleb was in surgery. I did what I could to make things as enjoyable as possible, including taking him to Walmart on Thanksgiving day to pick out a small Lego kit and buy ingredients for banana splits.

We made the drive home two days after surgery. It was good to be home.

Having a visit from his buddy Bryce did a lot to lift his spirits.


We figured out a way to rig up his wheelchair so he can get a bit of independence back. We used 3 layers of cardboard because I'm the queen of cardboard and it was readily available. The cardboard actually slides under his seat cushion so that the weight of his body will keep the leg rest in place. We didn't actually have to attach it to his chair. I bought some thin padding and fabric (he wanted Dallas Cowboys fabric) at Walmart to cover the cardboard. It works perfectly and allows him to get around a bit. I did put his wheelie bar back on because having his legs up changes his center of gravity and he could tip back.

Caleb wore the soft casts for the first week. Today Glenn and Caleb made the trip to Galveston for his first set of hard casts. He will go to Galveston every Tuesday for the next several weeks for a new set of casts. Each set of casts stretches the legs a little bit more than the week before. 

Okay, ready for the nitty-gritty incision stuff? I know you are.

This is his hip. Yngve did the SPML procedure on the hips and hamstrings. I couldn't get photos of the hamstrings because of the casts. You can see that the incisions are barely incisions at all. They are TINY! No stitches, no blood loss.

Now the knee capsulotomy is a whole different ballgame. Glenn got these photos today at the cast change.

He has incisions on both sides of each knee. You can see one red spot above the incision, this is a small sore from the casting. I don't like it but the doc wasn't concerned. Pray for it to heal quickly. Pressure sores are my biggest fear and with serial casting they can be an issue. Luckily the weekly cast changes will allow us to see how his skin is doing each week.

Yikes ya'll. 

Here he is today in his new hard casts. They glow in the dark!

His legs are so much straighter already! I can't believe how much taller he looks. I couldn't believe how long he was when I tucked him into bed tonight. He noticed it too and said we would need to get him a new bed because he's too tall now! They should get a bit straighter each week. They wrapped his feet this time too because he tends to have a lot of flexion in his feet so they are trying to stretch them as well.

Continued prayers that we can get those legs as straight as possible. Pray that we keep pressure sores at bay and his skin stays nice and healthy. And pray that we can learn to manage life and find a routine. Day to day stuff is proving difficult with his legs in casts and he is much to heavy to just pick up. 

I will continue to share our experience and his progress. Feel free to ask questions and I'll do my best to answer them as the weeks go on.





Tuesday, November 15, 2016

Selective percutaneous myo....what!?

A few months ago I expressed my frustration over Caleb's leg contractures. We have been fighting a never-ending, never-gonna-win, battle with his leg/feet tightness. It has gotten progressively worse over the last year and has begun to affect his ability to do things. He can't get his pants on without help because the tightness in his feet cause them to get stuck in the pant legs. He has trouble getting in and out of his wheelchair because his legs are so stinking tight. The contratures are hindering his ability to move forward with physical therapy. In some ways he is the strongest he has ever been but the leg tightness is holding him back.

So why is he progressively getting tighter? Well I think it is a result of several things. First, his tethered cord release in 2012 robbed him of his ability to walk. He had to start from square one. Because he could no longer walk, he didn't get as many opportunities to get those legs straight. We fought the tightness for a long time with stretching and bracing until the inevitable happened...he grew, and grew. Growth is by far the biggest cause of these contractures. He has shot up like a weed in the last year and is growing by the second. Trying to grow with tight hamstrings just makes the tendons tighter which makes the muscles shorter and less likely to straighten. That's where we are now.

After exhausting all options to get those legs straight, we realized that surgery was the only way. After talking with his physical therapist and doing some research we learned about a less traditional approach to contractures. It's called Selective Percutaneous Myofascial Lengthening (SPML for short, or Percs Procedure).

What is the SPML?



There are only a couple of doctors in the country that do this procedure. Luckily one of them happens to be in Texas. We met Dr. Yngve for a consult over the summer and Caleb is a candidate for this procedure.

Still confused? Here is a good illustration. Picture the contracture as a rope, pulled as tight as it can go.

The SPML procedure uses tiny incisions to "fray the rope" without cutting through it (like most traditional tendon release surgeries). There are no stitches, almost no blood loss, and far less scar tissue this way.

Fraying the rope allows the muscles to lengthen and stretch.

Caleb is having the SPML procedure on both legs, specifically the hamstrings as well as the groin/hip area. Caleb does have some significant tightness around the knee so Dr. Yngve will also be doing capsulotomies of the knees. This will actually require an incision into the knee.

This part freaks me out, I'm not going to lie. But I get that it is necessary in order to get the most flexion and movement out of legs. This isn't an uncommon procedure but it does add an element of concern.

Typically the SPML procedure is outpatient but because of the extra knee work, Caleb will stay one night in the hospital.

The plan (as of right now) is to do serial casting for a few weeks after the procedure. We will have to travel once a week so that Dr. Yngve can recast. Each casting will force the leg to straighten even further than the week before.

Caleb has the surgery next Wednesday (yes, the day before Thanksgiving). Here's what you can pray for:

First, that the surgery goes well and that Caleb does fantastic. No complication, no issues, no problems ya'll.

My biggest fear is pressure sores from the serial casting. Caleb can't feel his legs very well and casting a leg you can't feel can easily lead to wounds. Dr. Yngve has a lot of experience casting kids like Caleb and he is confident things will go smoothly.  That is largely the reason we are traveling weekly for the doctor to do the casting himself. So please pray for no pressure sores as a result of casting.

Pray for Caleb's anxiety. Obviously he isn't excited about having surgery but even he realizes that we have to do this. He knows things aren't right and he is frustrated as well. Pray that his spirits stay up especially during the weeks of casting when his ability to get around will be hindered a good bit.

It's hard as a parent when you have to make decisions like this. I hate that we have to put him through this but I know there is no other way. This isn't going to get better on his own so we have to intervene. I know this is the best route for him.

We meet with Dr. Yngve the day before the surgery to go over everything fully and I'll update on the blog as things play out.



Resources:

What is SPML anyway? (a good article written by a mom)

SPML group on Facebook

FAQ's about SPML

Wednesday, September 07, 2016

Lonestar CCI Dog Fest

It's that time of year again folks! We are raising money for Canine Companions for Independence by participating in the Dog Fest again this year. Our goal is to raise $1500 by October 1st.


You guys know how much Hallow means to our family. She has been such a blessing to all of us. We wouldn't have her sweet face if it wasn't for the donations given by generous folks like you. Please consider donating. You can click the photo above or the link below.


Tuesday, August 30, 2016

Our amazing trip to Miami!

Remember that awesome Miami trip we won on the Rachael Ray Show last October? Well, we finally got around to taking it. Prepare for a lot of pictures. A lot.

We stayed at the Royal Palm South Beach hotel. 


They hooked us up nice ya'll. Our room was more like an apartment with a huge living area, 2 bedrooms and 2 bathrooms.
The view. Nice.


Living area.

One of the bedrooms.
Seriously, our hotel was awesome.

We arrived in South Beach on Monday but after a 6 am flight we were exhausted so our first day there was spent getting settled and checking out the area a bit. 

Tuesday was our big Ultimate Jungle Trek at Jungle Island. We knew we were going to get a behind the scenes tour but we had no idea the level of awesomeness that was in store for us.


The best gift ever was the photographer that followed us around and took almost 400 photos. I didn't have to worry about capturing the moment, I got to enjoy every single second and I'm actually in these pictures! That never happens!

First animal encounter....LEMURS! Ya'll there is nothing like sitting on the floor and having multiple lemurs bouncing and climbing all around you and all over you!


Seriously the coolest experience ever. I could have stayed in the Lemur room forever.


My kids will never, ever forget this. 

Lemurs like curly hair.



That face says it all.



They have the longest tail. It is so cool. They also have these cute hands with long skinny fingers that are so soft. They also have tiny finger nails on the top of their fingers.


After the lemurs, we headed over to feed the Galapagos tortoises. Things took a comedic turn here. I'll set the scene with pictures.
I was trying to get this big guy to bite the carrot and our tour guide told me to just pull as hard as I could. You can see from the photos that I did what I was told. I hunkered down and pulled with all my might. Guess what happened when that giant creature finally bit through the carrot? I went flying backwards into a small ditch. It was hysterical. Everyone got a good laugh, I swear I even heard the tortoise giggle.


Everyone else managed to feed the tortoise without incident. I think they learned what not to do from me. 

Kangaroos were next. They were so sweet and cute.



We met a giant pig named Ace.

Cradling a sweet Kinkajou (a honey bear). 

This was taken right after the honey bear peed on Benjamin and I tried to catch the pee with my hands. That's what moms do....we catch bodily fluids in our hands.

This critter was a bit intimidating but oh so sweet. 

They even gave us a couple of porcupine quills to take home.

After lunch we went to the bird show. Perfect activity for my bird-lovin' boy.

After the show we got to see a few of the birds up close.
Touching the neck of an Andean condor.

A Great Horned Howl.

Ya'll we got to play with Capuchins!!

There is a Capuchin on my shoulder!!



 And if that wasn't enough....we got to cuddle a baby Capuchin!!
Caleb would have taken this sweet thing home in a heartbeat.

Baby Capuchins like glasses.


A baby flamingo. He was probably the softest and fluffiest critter we touched that day.

Ya'll, I'm still not done!! Wait for it....
A baby tiger!!!
(can you say Christmas card photo!!)

Can this by my driver's license photo please?

Stop it. I can't take it.



Nose to nose with a baby tiger! Who gets to do that?



We got about 15 minutes with this cute little fur baby and it was a blast. 

Can I keep this face please?

I kept telling the boys (and myself) "you will never get to do this again so enjoy every second".

Hmmm...maybe this should be our Christmas card photo.

My very passionate, bird-loving boy got to hold a parrot like a baby!



I have no words. It was truly a remarkable, once-in-a-lifetime experience. We would never have been able to do this on our own and I'm so humbled and blessed by the generosity of The Rachael Ray Show and Jungle Island. It was just amazing. I get all teary just thinking about it. 

So after our wild Jungle Island tour, we still had 3 days left in South Beach. So we hit the beach. Every day.


Some folks cruise the streets of South Beach in a Lamborghini. Nope, not us. This is how we roll. Seriously this thing was a life saver (and a back saver). Our hotel went above and beyond by renting this for us and covering the cost. 

Always building.

Love this photo.

My water baby. You can't keep this kid out of the waves. We had to drag him to the beach just to get him to rest.







I was blessed by some time with a fellow SB momma. Her family drove over 2 hours to have a beach day with us. Benjamin made a new friend in Atreyu. They got to talking about Minecraft and that was all it took.

Ezra wanted to hold Caleb's hand. My heart melted.


It was so fun hanging out with Lauren and her family. The online SB community is tight and it is such a blessing when you actually get to spend time with each other in person.




We spent a lot of time at the beach. That was pretty much all the boys wanted to do. When we weren't soaking up the sun, we wandered around South Beach finding little places to eat and taking in the sights. I was memorized by all of the different cultures there. I don't even know how many languages I heard. There were people from all over the world.

Our favorite place was a little sandwich shop that had delicious shakes. I had 3 espresso shakes while we were there.

Eating lunch.

Do you see what I see? I spy an....

....iguana. Ya'll this guy was just walking around. It was crazy cool. 


Beautiful.


We had such a great time. I will never understand why we were chosen for this trip. I'll never understand why we have been so blessed. I had no idea that making wheelchair costumes would lead to this. Life is crazy you guys and God is good.



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