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.


Friday, January 27, 2017

Tapestry of Grace, Year 3, Unit Two

We wrapped up another TOG unit last week. This unit took us a bit to get through because of Caleb's surgery and the holidays but that is the joy of homeschooling right? We get to push pause when things come up and we are never behind.

Year 3, Unit Two covered a lot of great topics. It was still heavy with US history but touched on things going on in other parts of the world. I love that nothing happens in isolation when it comes to historical events. Things are ultimately connected together and what happens in one area of the world directly impacts other parts of the world. History truly is a tapestry made up of connected events.

We started off the unit by learning about Texas history (which we loved, bein' Texan's and all). We read about Sam Houston, Davy Crockett, and the Battle of the Alamo. We also spent some time on the Indian Removal Act enforced by President Andrew Jackson in the 1830's.

Then we headed overseas to learn about the Victorian Era. We learned about Samuel Morse, the developer of Morse Code. We "made" our names in Morse code by using sequins.



We read about Australia and the Aborigines. We made boomerangs out of cardboard. 



Then we headed back to the US to learn all about the Oregon Trail and the California Gold Rush. I loved this section so much! Did you know the pioneers traveled over 2,000 miles in covered wagons just to get to Oregon? Did you know it took them 6 months or more to make the journey? It wasn't an easy trip either and I was amazed at the perseverance of these folks to try and find a better life. 

Pioneers often made memory quilts that featured special moments or memories as part of the quilt. The boys made their own version of a memory quilt using paper.



The Oregon Trail eventually led us to the California Gold Rush. For fun, I painted some small rocks gold and mixed them in with assorted rocks. The boys used a foil pie plate to "pan" for gold.



 We wrote a poem about Gold Fever.


We added more states to our growing US map.

And added some Presidents to our timeline.

Another Unit lapbook complete! These lapbooks really serve as a great review at the end of the unit. We cover so much good material over 9 weeks that it is nice to have a quick refresher at the end of the unit.



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. 

Monday, December 05, 2016

FreeWheel Wheelchair Attachment Deal!!

Last February I posted a detailed review of the FreeWheel Wheelchair Attachment. If you haven't read that post, take a minute to read it. The FreeWheel is a game changer for those in wheelchairs. It has allowed Caleb to navigate the rough trails at our nature park with ease. It makes pushing through grass so much easier. It has allowed him to sail down the bumpy hills at full speed without fear of tipping forward. Check out this video of Caleb tackling a rocky hill with ease.




We love it. And we love Epical Solutions for giving us the opportunity to try the FreeWheel in exchange for our honest review.

It just so happens that Epical Solutions is offering free shipping on all FreeWheel purchases throughout the month of December. Add the $100 off ADAPT code and that is a savings of $140!!

You can contact Justin directly for more information!

Justin Proctor
FreeWheel Representative
517-918-0784
justin@epicalsolutions.com
https://www.epicalsolutions.com

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.





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