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

Thursday, November 10, 2016

5th Annual Spina Bifida Christmas Card Exchange



It's that time of year again folks! It is time to sign up for the 5th Annual Spina Bifida Christmas Card Exchange. If you aren't familiar, here is how it works: Sign up by sending an email to the address above (name, address, and child-if child has SB). I will be taking signups until November 25th. I split the list of participants into groups of about 10-15 families. You will be assigned a list of families to send a card to. I try to keep the list size small so it is manageable but you are free to send out as many cards as you want. 

It is really fun. I love going to the mailbox and finding several cards each day from fellow SB families, children, and adults. 

Sign up!

Tuesday, November 01, 2016

Minecraft Halloween

Minecraft is incredibly popular in this house so our theme for Halloween was a no-brainer.


Our Minecraft Jack-o-lanterns.

Benjamin is a Skeleton and Caleb is a Zombie riding a spider....if you know Minecraft then you understand. Benjamin had the idea to decorate our trunk to look like the inside of a Minecraft house so I went with that. It came out great and we actually won "best trunk" at the trunk-or-treat.

Benjamin loved his costume. I've never seen that kid so excited. 

All 8 legs made it through the night which was nothing short of a miracle. Watching Caleb navigate this spider was hysterical. He kept bumping into things and hitting people with his spider abdomen!

A close-up of the trunk. I just painted some cardboard brown to look like walls. I printed out the TNT sign, bookcase, and the Minecraft wall art. I made the chest out of a shoe box and found the torch printables online, I added lights to make them really glow. Our Minecraft trunk was a huge hit. Everyone, kids and adults, commented on it. 

Poor kid couldn't see a thing but he had a blast anyway. You can actually find these Minecraft heads online. I just printed out all the sides, made a box out of cardboard, glued the head pieces on, and done! For the bones, I just used chrome duct tape on a black turtleneck and black pants. Of course it was in the upper 80's here in Texas so my boy was hot. Oh well.

The spider face. I added red lights for the eyes which looked really cool once the sun went down.

Torches blazing.

It was a great night, the boys looked great and the trunk was a winner. It was fun but I'm so glad October is over. I made 26 wheelchair costume kits from my Etsy shop so by the time I got around to making costumes for the boys, I was DONE. I barely had anything left in me these last few days, but it got done. Whew, I'm glad it's over. 

Yesterday may have been Halloween, but more importantly, it was Hallow's 3rd birthday. 

She's so pretty. I love her.


Links:
Minecraft Skeleton Head
Minecraft Zombie Head
Minecraft Torches


Monday, October 31, 2016

Faces of Spina Bifida: Meet Owen, Olivia, Jemma, and Jordan

Owen
(right)

Ten years ago today we went in for my first ultrasound. Since it was Halloween, everyone in the doctor's office was dressed up. The ultrasound tech told us we were having a boy! We had a 2 year old boy and 16 month old girl at home, and now we were having another boy! We were thrilled! Then the tech said she needed to show the doctor the scan. We didn't suspect anything was wrong.

When my doctor came in she was dressed in a robe and curlers. She put her hand on my knee and gently said, "I see a couple of things on the ultrasound I'm concerned about." I took a deep breath. "It looks like your little boy has a cleft lip and palate." Okay, we can handle that I thought. "I also see fluid around his brain and a sac containing spinal nerves protruding from his spine. He has hydrocephalus and Spina Bifida. With the presence of multiple birth defects we're probably looking at a chromosomal abnormality. It may be fatal. I'm so sorry."

The world stopped. My tears flowed. Our world had been turned upside down in an instant. All our hopes and dreams for our son had changed, just like that. The questions swirled in my head. What would this mean for our son? My doctor was pretty confident in the diagnosis, but wanted us to see a specialist ASAP to confirm. She used lots of big words. It was completely overwhelming.

The thing I remember most clearly from that day, and still marvel at all these years later, is the overwhelming flood of peace that came over me as I lay on that exam table. This was most certainly God’s grace. I would have expected a diagnosis like this to feel devastating—it was no picnic, don’t get me wrong. But God gave me an unmistakable peace in that even if our worst fears were realized and Owen would not survive birth God was still in control. It was the most clear experience I’d ever had of the peace that transcends all understanding in Philippians 4:7. Our world was certainly rocked, but our faith was sure. We named our son Owen Mark right there in the ultrasound room. It means "Mighty Warrior," and that's just what he turned out to be.

Forty-eight long hours later we were sitting in the Perinatologist’s office waiting for the results of a level two ultrasound. The specialist was not as compassionate as my OBGYN had been. He flatly stated that he’d give our son a 50/50 chance that he’d survive birth. He gave a grim prediction of what our Owen’s life would be like if he survived. “He will never walk. He will never be normal. He will have no quality of life whatsoever. He will likely be a vegetable.”

Thankfully we familiar enough about these birth defects to know that NEVER was a pretty strong word to be using so early in the game. Both Spina Bifida and clefts are present in our extended family. We believed that though this doctor’s predictions may be right, there was plenty of room for God to work a miracle. God is the only one who knows the future. We held on to that Hope with all our might as we faced whatever lay ahead.

The specialist began to explain how we might “terminate” the pregnancy. I cut him off. This was our son. He was fearfully and wonderfully made by His creator. Each day of Owen’s life was ordained before one of them came to be. We loved him no matter what.

Since both conditions were present in our family, I asked the doctor if it was possible Owen just happened to get both at the same time. He replied, “I suppose you can get hit by a bus and shot in the back of the head at the same time, but it is pretty unlikely.” The nerve. In my dreams I often would go back to this moment and stand up and slap him across the face. Instead I snapped back, “Well, I think that’s exactly what happened.”

We chose to have an amniocentesis to know if we needed to plan to deliver a baby with specific medical needs or prepare to say goodbye to our son. Sure enough his chromosomes came back perfect. God is so good. And He still would have been good if the outcome were different.

If only I knew then what I know now? I would have understood, like my friend Carrie said in her post a few weeks ago, that the events of this day ten years ago would only be a bump in the road of our journey.

Owen is 9 ½ now. He has had 30 surgeries, with more on the horizon. He walks independently with AFO’s, caths 4 times each day and does a bowel program every other day. His Spina Bifida is just part of his life. It does not define who he is. I can say with confidence that God has used the challenges Spina Bifida has brought into his life to grow Owen’s determination, persistence & creativity. He always finds a way to do what he wants to do. In the last few years, Spina Bifida has actually been in the background as we’ve encountered new “bumps in the road”—with the diagnosis of PTSD and Autism.

Owen is a super creative Lego and Minecraft builder. He loves the Ninja Turtles and playing on the iPad. He likes playing with his brothers and sisters (he’s the middle of our five kids.) We always joke that he has the best handwriting in our entire family. He’s crazy good at remembering obscure facts and is a great cuddler. He is a concrete thinker, and as such his biggest frustration in life is that he is shorter than his younger brother. “If you are older you are supposed to be taller.” No examples to the contrary will sway him in this conviction.

I asked Owen what he would tell someone who didn’t know about Spina Bifida what it was like to be a kid with SB. This is what he said: “Kids with Spina Bifida have shunts and wear braces. Kids with Spina Bifida can do anything they want… except running fast. We go to the doctor a lot. Some cool things I got to do are go to the Indy 500 and be in a commercial for Riley. He agrees with Toby that the worst part is that the operating room stinks. “I don't like the mask. It stinks even without the scents they put on it.”

I love this kid to the moon and back again. I am privileged to be his mom.



Olivia

She's 6 years old and amazing. She's in first grade and has an entourage of kids that hang around her. She loves dolls, playing hide and seek and tag. She's not able to wall at all but that doesn't keep her in one place. She's everywhere all the time. She doesn't mind being the girl in the wheelchair because everyone has something different about them and this is her awesome!


Jemma

5 year old Jemma Grace Donahue, born on January 17, 2011 as baby B. She weighed 4lbs 15ozs. Due to being under 5lbs she had to go to the NICU where the noticed a skin tag on her lower back. They ran scans and ultimately found she had SB. We had many check ups with her specialists and not had any problems with it. She does have a raised bump on her lower back that we keep a eye on. She's a very active tomboy and dreams of being a firefighter. She adores the ninja turtles, and everything boy. She has an identical twin sister who is the polar opposite to her.



Jordan


Jordan Lee is an amazing young lady! She's got a great and quirky sense of humor and she loves sports, especially the Texas Rangers and Dallas Mavericks. She is 17 and a senior at Lamar High school in Arlington where she participates as a para athlete with the track and field team. She won gold in all of her events at the UIL state track meet this year. She's also a member of the National Honor Society, HOSA, French Club, and Science Honor Society. She will graduate in the top 5% of her class this year! She plans to attend UTA or the University of Illinois so she can play wheelchair basketball and study neuroscience. She loves wheelchair basketball and has been playing for the Dallas Junior Wheelchair Mavericks since she was 9. Her goal is to make the 2020 USA women's team and go to Tokyo for the Paralympics. In her spare time she loves playing with her lab Landry, reading and watching sports. She is strong willed and stubborn and doesn't let much get in her way. She doesn't like being called an inspiration but she's a great example of what a person with Spina Bifida can do and become. Everyone is different and everyone deserves a chance to succeed and show what they can do. We were told to abort her at 18 weeks. Look what the world would have missed out on. She's loved by many and prefers to focus on her abilities rather than her disabilities.

Sunday, October 30, 2016

Faces of Spina Bifida: Meet Joseph, Ethan, and Lane


Joseph

Joseph has myelomeningocele, hydrocephalus, and Chiari Malformation. He and his wonderful sister came to live with us in January of 2015, when he was almost 2 years old. We were told he would probably never walk, but within a couple of months of moving in with us, and using his walker, he was off and running. Literally. He loves ninja turtles, fire trucks, and baseball. He is brave, smart, hilarious, and dramatic. His life is precious, and is one of the greatest gifts we've received. We might have to do a bunch of things differently than other people do, but we still have fun, and accomplish what we set out to. There are so many things that we took for granted before getting to have Joseph; I'm so grateful to him for opening our eyes to a more purposeful way of living. He is our miracle, and I think everyone that meets him feels a little of his joy.

Ethan


In Ethan's words: SB is not always easy to deal with but you get right back up and keep going. I never want anyone to feel sorry for me...I have a great life.



Lane

He is 6 and loves helping coach softball and hunting with his dad. Lane wanted to be Santa for Halloween!


Saturday, October 29, 2016

Faces of Spina Bifida: Meet Riley


Riley

You know how God puts certain people in your life at just the right time for a very special purpose? Well we became friends with Glenn and Cassie McLelland at church years before we had children. Then came along the time that we both started our families, and both Cassie and I got pregnant. I still remember what I was doing and where I was the moment I heard Caleb was diagnosed with Spina Bifida. To make a long story short, our daughter Riley was born 2 months before Caleb. Her Spina Bifida came as a surprise, as she was undiagnosed prior to birth. Glenn and Cassie having been preparing for Caleb’s birth, were full of information. They came to the hospital and filled us in on everything they had learned about Spina Bifida since Caleb’s diagnosis. We will always be beyond grateful for having them in our lives during such a traumatic time. If we’ve never said thank you before…here it is! Thank you Lord for putting such an amazing family in our lives when we most needed it!!!

On to beautiful Riley! This amazing little 11 year old is shy, sweet, and described as having an old soul! She is so very kind and compassionate, always putting others before herself. This girl is STRONG y’all! She doesn’t let stuff get to her and doesn’t allow others to pressure her to change, (we could all learn a thing or two about this, right?!). Riley is wise beyond her years and takes SB in stride, dealing with each difficulty with unlimited strength. Riley enjoys art, fashion, cooking and music. She thrives off of one-on-one time with just about anyone and loves deep conversation. She loves researching her Korean ancestry and visiting with family (who live all over the country). Riley has little fear of trying new things like snow skiing (big shout out to Crested Butte Adaptive Sports), and loves enjoying motosports with her dad and two little brothers, Luke and Owen. Her newest adventure she is about to embark on is horse back riding lessons. This kid is truly one-of-a-kind. We know there are HUGE plans for Riley’s life and it is by the Grace of God that we were trusted to be a part of it! Riley, we love you more than you will ever know!

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