Kylee: 2 Months Post-Op!

Our sweet girl had another follow up today with Dr. Mayfield! For those of you who missed her 4 weeks post op post which included some amazing before and after pictures, click here! She had a major case of the giggles today with Dr. Mayfield…

 

Her incisions are looking great and are healing nicely. She’s been cast free for a month and boot free for about 2 weeks now.

 

Kylee has resumed her twice weekly physical therapy and her WONDERFUL therapist is doing a great job at helping Kylee adjust to her “new foot”. Having nearly never put weight through her heal or walked in what’s considered a “natural” position, it’s taking some getting used to. We’re currently working on major stretching and walking heel to toe, especially on that left leg/foot. Kylee was also released to participate in PE and recess again at school – yay! For now, she doesn’t have to be fitted for a new brace, which is also great news for her! She’s THOROUGHLY enjoying being able to wear her cute boots which she was never able to do wearing a brace!

We’ll go back in two months for her next check up and update then!

Cast-free Kylee! {4 weeks post SPOTT surgery}

Our Kylee is now cast free! She ended up being able to get it off 1-2 weeks early than we had anticipated – yay! I have to take a moment to brag on this little girl. She has made this entire process seem like a piece of CAKE. Seriously, she is such a brave, tough little girl and continues to amaze me as she grows!

I mentioned a while back that she happily starting crawling the day we brought her home from the hospital after surgery as it was much easier than being wheelchair bound. It was within 2 weeks she started applying pressure and walking on her left foot. Took us all (including her doctor) by surprise but she insisted she was fine and her doctor gave the OK as long as she tolerated it. Because of her smooth sailing recovery, Dr. Mayfield decided to take the cast off a bit earlier than planned.  You’ll notice her cast is no longer neon yellow and she is sporting the caution orange color here. Somehow she (ahem…Daddy) got her cast wet during one of her baths so had to have it re-casted which is where the orange came in. Bret and I took her this week to have it removed for good! She walked right in there like she owned the place and was happy to get the show on the road…

 

Below are pictures of her incisions… if you don’t handle stitches, incisions and a little dried blood very well, here is your warning to leave and come check the next blog post….

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Dr. Mayfield did a total of 5 incisions. Here are the first three on the inside of her foot. He started at the bottom, took a teeny tiny tendon, sliced it in half (length ways) and then proceeded to transfer it up and around the back of her leg using other incisions to help guide the tendon to the desired spot on the other side of her foot. The pink arrow is the incision where he did a gastroc release to help with her tone issues.

Here is the outside of her foot. You can see the tendon was brought around the back of her leg and again “weaved” under the skin where it was attached to the spot that the middle arrow is pointing to. You can see where the outside of her foot is calloused from walking on on it for so long. Her doc is confident over time and walking in a more natural position that it will all heal itself.

Kylee is now wearing a boot to help protect her foot a little longer. We’re unsure yet as to if she will go from this into a regular shoe or if she will still need to have extra support from an SMO (brace) of some sort, like she wore prior to surgery. She will go back to Cooks in 4 weeks to check her progress and to discuss the next step. Obviously we would love for her to FINALLY be brace-free but understand there may be a few more hurdles to jump before we reach that point, and that’s ok!

Now… some before and after pictures! Here’s a pretty typical picture of Kylee’s foot before surgery. This one was taken in October.

This one was taken at the hotel the night before her surgery. While we could physically manipulate her foot to (somewhat) point it forward, it always went back to this position. Walking, running, standing still, with a brace, without a brace, with or without wearing shoes THIS is what she dealt with 24/7. Although she has never seemed to mind, it was painful to watch and unfortunately, it was only getting worse as the months passed.

Ready for this?! Kylee’s foot as of yesterday…

Seriously. Look at how freaking great she looks! This is NO manipulation at all and is all her. Although she is walking well in her boot, she’s still very hesitant to walking barefoot. The first time she stood without her boot she cried and sat back down immediately. I’m not sure how much of it is pain and how much is just that weird sensation of not having your foot being held in one position because of the cast. Dr. Mayfield said we can expect it to be tender and sore as things loosen up again. I’m very anxious to see once she does start walking on it how everything looks but for now, Bret and I are so please and even more so thankful we have amazing doctors that help our babies thrive!

Here are a couple of shots from the back BEFORE surgery. This is a good representation of the best position we could get her foot into before..

…and a look from the back post-surgery!

There have been several times over the past few weeks, while in her cast, that we notice her leg/foot still turned inward. Her neurologist and surgeon are keeping an eye on the rest of Kylee’s left leg. We’ve had several doctors think she has a mild case of tibial torsion (where the tibia twists abnormally) going on while others don’t think it’s an issue. One thing that is certain is that kids with hemiplegia cerebral palsy are at a very high risk for abnormal bone development on their affected side. We’ve been told over time, there’s a good chance Kylee could develop other issues further up her leg that we may need to address. All of that, of course, depends on her growth and the results we see from this surgery. While it seems obvious her foot will be MUCH better from here on out, what we don’t know is how much of that twisting was her actual leg and not just her foot.

Before we left Dr. Mayfield’s office she let him know she was “ready for him to fix her left hand”. Bless her heart. Makes me sad but also happy at the same time knowing she feels that safe with him! He explained to her that he doesn’t work on kids’ hands but his very good friend did and that as soon as we finish up her foot, he would be happy to introduce her to Dr. Sherman. One thing at a time, baby girl!

Thank you all for your support through this surgery (and the others we just had!). We greatly appreciate all of the prayers, the cards, the meals and the extra help with the kiddos. Bret and I are so so blessed to have so many people who care and who back us through whatever is thrown our way!

Recoveries… Quad-Style…

Our Kylee Mae is 6 days post-op and doing remarkably well. Not ONCE has she complained of pain since being home! She’s hardly using her wheelchair in the house as she prefers to crawl until her knees hurt (we’ve offered knee pads and she doesn’t like them). She can now even go potty all by herself (at home)! I never realized how much a five year old peed until I had to take one each and every time. She also went back to school on Friday! I was told her class was more than excited to not only have her back, but to see her new wheels too ;) Bathing her and getting her in and out of the van has been a little challenging, but if those are our only issues, I won’t complain! Here she is posing with the Edible Arrangement sent to her from Mamaw & Wayne!

Korbin’s belly is healing nicely too. Here’s his tiny scar from his surgery… (by the way, those are leftovers from the tattooed battle-scene he had going on a couple of weeks ago, I swear we bathe him.)

Mr. Brody's head is looking better each day as well! He has a follow up with his neurosurgeon in a few days and should be cleared to resume all normal activities such as recess and PE at school… whoop!

These quadlings are seriously such BIG troopers and they make me so proud :] Thank you all for your continued prayers and support!

Stay tuned, I CAN. NOT. WAIT. to share our advent fun we’ve been doing over here!!!

Kylee: Home Sweet Home!

Kylee was discharged yesterday afternoon as planned. She is happy to be home and feeling great! While her wheelchair is a wonderful help to us, unfortunately, Kylee can’t wheel herself. Her left hand (aka “Lefty”) can’t quite grasp and rotate the wheel like her right hand so the poor girl goes in circles when she tries to get anywhere alone! I was hoping that eventually she’d be able to crawl from place to place but to my surprise, she was already crawling all over the place within an hour of being home!

So far, she’s only had pain medication one time in the hospital. She’s not complaining a bit. Brody & Korbin also came out of surgery requiring no pain meds during recovery... Bret and I are thinking they may all have a high pain tolerance due to all they went through during NICU and those first few years. Who knows… I’m just glad she’s feeling good!

Here are the quads saying a special thanks to the Self Family for having dinner delivered last night after we came home. Thank you so much!

While she’s glad to be home, Kylee wouldn’t have hesitated to stay at the hospital. I’m always amazed by Cooks and the love that every person there has to offer. It’s truly an amazing place and I’m so thankful we have such a wonderful place so close to home where our kids can be treated with the best care. Yesterday morning, Chanel (the therapy dog who was there for their first round of “in office” Botox) came to see her. She walked right in, hopped up on Kylee’s bed and would have stayed all day if they had let her. Those of you who know Kylee, know she loves loves animals so this made her day!

After a nice pancake breakfast, Kylee was able to ditch her IV pole for a while and venture downstairs where she met…..SANTA! She spent a good ten minutes with him talking, telling him all about Pita, her brothers and sister, our tree and what she wanted for Christmas. This was the first year she wasn’t scared at all – I thought we would never get there ;)

After meeting him, she decorated some ornaments in the library and chose to go back to give them to Santa. Never hurts to get on his good side, I guess ;) He told her he loved them and that he would take them back to the North Pole to show his busy elves…

 

After leaving Santa we ran into Ralph, Chanel’s quadruplet brother, for the first time! We have heard so much about Chanel’s siblings and how they are all therapy dogs. Kylee was thrilled!

It wasn’t long after our fun throughout the hospital that Kylee started feeling uncomfortable. Although she was back in her bed, the fun continued. She was visited by a group of pilots who all showered her with gifts and shortly after that, two clowns came to entertain her! I’m telling you, their patients treated so wonderfully and they give kids every reason to NOT want to go home!

 Kylee was supposed to return to school on Monday but is she continues to do great, she may go back on Friday. She will go back in 2 weeks for a follow up with Dr. Mayfield and should get her cast off after 6 weeks. Thank you all so much for your kind words and prayers! Bret and I are hoping this is our last surgery for a while, as I’m sure our insurance is too ;)

Update - Kylee is out of surgery!

Kylee got out of surgery just after 11am, thank you all for your kind words and prayers! Dr. Mayfield said everything went great and even did surgery on her little unicorn's left leg with a cast that looks like Kylee's :)

 

Her doctor made a total of 5 incisions to complete the transfer. The tendon he took (wish I could show a picture that explains it better, but laptop is acting up) ran down the side of her ankle into a bone on her foot. He went in and split the tendon in half (length wise, not cut in half) and re-routed one half of the tendon around and attached it to the opposite side of her foot. Basically, he made the inside of her foot that was really tight, weaker. The half of the tendon that was pulled around to the other side is now helping pull her foot to a more natural position. He said once he put the first suture in that attached the tendon to the new spot, he let go of her foot and it stayed put - AMAZING! He added a few more sutures to reinforce just to be safe. He also did a gastroc release (cut the muscle near her calve) to help her increased tone.

After surgery, the anesthesiologist performed a sciatic nerve block so Kylee won't feel anything from her knee down. The block typically lasts 12-24 hours. Once the block starts to wear off is when we deal with additional pain management. Please pray that we can can easily control her pain! If all goes well and she appears to have tolerated surgery well, we should be discharged tomorrow.

Her bright YeLlOw cast! Next to pink, her signature "quad-color", Kylee loves yellow!



We will update again soon!

Please Pray for Kylee {SPOTT Surgery}

 

Tomorrow morning (Monday, Dec. 1st) our Kylee will go into surgery. Yes, another surgery. This will be our 3rd in about 6 weeks. Thankfully, both boys are doing wonderfully and their recoveries have been great. Korbin was released by his doctor to resume normal crazy, five year old boy activities this week and Brody should be cleared from his neurosurgeon next week! Now our focus is on Mrs. Kylee.

Most of you know Kylee has Hemiplegia Cerebral Palsy. Her grade 4 (most severe) brain bleed (IVH) on the right half of her brain has caused CP that affects the left side of her body, specifically her hand and leg/foot. After years of therapy, multiple Botox treatments and years of braces/orthotics, her condition is only worsening and her little foot is turning in more and more.

 After consulting with many doctors we've decided Kylee could greatly benefit from a tendon transfer. Dr. Mayfeild will be performing the SPOTT procedure tomorrow morning at Cooks Childrens in Fort Worth. SPOTT - Split Posterior Tibial Transfer. Dr. Acosta, her neurologist, targeted this specific tendon during her last Botox treatment (in May) and it had a BEAUTIFUL effect. Bad news, it only lasted 2-3 weeks. Good news tho is that it confirmed what her orthopedic surgeon had suspected was the problem. The fact that the Botox worked reassured him that that's where the work needed to be done. Botox is what some consider a "band aid" (which can help and last for months, just not in Kylee's case) and we're hoping if the surgery is successful, it will be a permanent fix...for her foot anyways. Bret and I take great comfort in knowing our doctors (neurologist, ortho surgeon, neurosurgeon and neuropsychologist) work closely together and often work as a team. We've handed our precious babies over to them before and know they're in great hands here at Cooks.  

Kylee, Bret and I are staying in a hotel tonight near the hospital. We live a bit aways from the hospital and Kylee needs to be there at 6:30am. Her surgery is scheduled for 8am and will last approximately 3 hours. After surgery, Kylee will be admitted and will hopefully be discharged Tuesday afternoon. Unlike her brothers', Kylee's recovery will be a bit of a hard one. She will be in a cast and will be in a wheelchair for 6-8 weeks. She will be out of school this week and should be able to return next week with her siblings. I personally have NEVER dealt with a cast and only a wheelchair when I was pregnant with them. Needless to say it will be an adjustment for us all, but especially Kylee. We've talked to her over the last few weeks and have explained things the best that we could. She knows she will have an IV, surgery and "get to be" in a wheelchair but she's most excited about the ice cream and balloons we promised her :)

When we came back from dinner, the sweet lady at the front desk had made a special basket just for Kylee with her name and all! Inside of it is lots of candy, popcorn, coloring books, playing cards, jewelry, cookies, word searches and more! SO sweet and was such a fun surprise for Kylee!

Here is the latest picture of Kylee's foot that I took tonight in the hotel... You can easily see more pics of her little foot, as well as see more history regarding her CP, by searching in the white box at the top left or the left side of the screen. Type in keywords such as "Botox, CP, Hemiplegia, AFO, Braces"...etc. and a list of posts should come up.

For now, we just ask that you say a prayer for our sweet girl. That she can be brave, that God guides the doctors during this tedious procedure and that her pain can be easily controlled during recovery. Bret and I will update everyone here tomorrow once she is out of recovery.

Thanks!

Mr. Korbin, Prepped for Surgery!

Our sweet Korb is headed to Cooks Surgery Center in the morning (Tuesday the 11th) for a minor surgery. He’s had two small bumps just above his belly button since he was itty bitty. Multiple docs have kept and eye on them over the years and have never been too concerned. Some of the pros say they’re benign cysts and others believe they’re abdominal hernias. All the docs have agreed they’re nothing to worry about unless they start to bother Korbin. Over the past 6 months or so, Korbin has complained of them hurting. Nothing major, but enough to make him mention discomfort multiple times on and off for a while. He will be going in in the morning to have them removed/repaired. Dr. Kadesky will be performing the surgery which is to take no longer than 1 hour. After waking up and proving stable, our little mister will be on his way home and should be back at school within a day or two!

 

A closer look at his tummy before bed tonight (never mind the inside-out, backwards Pjs!)…

 

Korbin’s not nervous whatsoever, which is nice. In his mind he’s about to live it up at the hospital, receive balloons, skip a little school and eat ice cream for being brave like Brody did a few weeks ago. Although his won’t be quite the same experience, we’ll try to make it as special as we can ;)

We appreciate any positive thoughts and prayers you could offer us in the morning. He’s scheduled for surgery at 11am. We will update tomorrow evening. Thanks all!

Brody: Home Sweet Home!

 I’m happy to report we are home. Wow what a whirlwind. On our quiet drive home, with Brody sleeping peacefully in the backseat, I told Bret “I can’t believe all that just happened.” Not only a very scary thing to go through but everything being unexpected and all of a sudden makes it hit a little harder. As I mentioned before, when we took Brody into the first ER, Bret and I both expected to be told he had a little something viral going on and that he would be fine. My heart fell to my feet when the doctor told us he needed to be transported right away. Each year at Brody’s annual check up, Dr. Honeycutt always reminds us it’s not a matter of if the shunt malfunctions, it’s a matter of when shunt malfunctions. Low and behold, with no warning, here we were.

The scariest part of the entire thing for Brody was the dreaded IV. He and Kylee have had their fair share and h a t e them. Once that was in and we were ready to transport, the thought of being in an ambulance scared him. Once we were in (I rode with him and Bret followed) he was LIVING it up! He quickly stole the hearts of the EMTs with his thick southern accent and had them laughing hysterically the entire ride. “What’s that there on yall’s wall? Where’d yall get all these doctor tools? Why we drivin’ backwards? What kinda phone you got?” No doubt that crew will remember Brody for a while!

This is the picture of Brody just before going into surgery the next morning. You can see the fear in his little face :( His nurses were wonderful and Dr. Honeycutt prayed over Brody, just like he did 5 years ago, before he took our baby away from us. Nothing makes kissing your baby goodbye before a risky surgery easy, but having a doctor like ours makes it a little more bearable.

The catheter in Brody’s brain that helps drain the CSF was completely blocked causing the fluid to build up (see previous blog for further details). The new catheter that Dr. Honeycutt placed relieved pressure immediately. The doctors told us that in *most* cases, shunt patients show the same symptoms each time their shunt malfunctions, so now we know what to look for in Brody. The hard part is knowing that his symptoms could have been overlooked SO easily, especially for people who don’t know Brody very well. I’m so thankful, even after doubting our first instincts, that we took Brody in.

Here are a few pictures of Day 1. He was out of the OR by 10am and was very lethargic ALL day long and was only awake for maybe a total of 1.5 hours for next 20 hours or so. He would open his eyes and we would excitedly greet him only to have him drift off again within a minute or two. Although he had several visitors, I’m not sure he remembers any of them being there. Most of them left evidence, which helped ;) Love the picture of Brody & his little cousin Riley!

The below pictures are from Day 2, today. HUGE difference! It took him a while but once he ate a little breakfast he ventured out of his room. He had a great time in the awesome playroom and walked the halls for a good while before heading back to his bed. Luckily he isn’t in too much pain and his incision looks great (I’ll spare you the pictures!). They discharged us this afternoon and after a good long nap, Brody was in a great mood to meet his brothers and sisters!

 

Brody has to take it easy but will return to school next week. No recess, PE or strenuous activity until just after Thanksgiving, when he goes back for follow up scans to check his ventricles. We’re watching him closely for signs of infection or a back to back malfunction, which they say happens sometimes. As for now, our brave little boy is tucked away in his own bed and doing well, which we are so thankful for!

Thanks again to all of you for the unending support. The prayers, words of encouragement and the many people stepping forward offering to help are so appreciated. A special thanks to everyone who helped with the other kiddos at home. It’s because of YOU that Bret and I BOTH were able to be by Brody’s side and we feel so blessed to have so many selfless friends and family members there when we need them!

Now to take a breather before both Korbin and Kylee go in for surgeries of their own in the coming weeks… ay yi yi! Will keep everyone posted as we get closer.