Wednesday, January 7, 2015

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…

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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.

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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.

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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!

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

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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.

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

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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!

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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..

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…and a look from the back post-surgery!

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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!

Thursday, December 18, 2014

Advent Activity #2 {Jesus Is Love}

We did two activities from our new Advent Calendar this week. Our first lesson was “Jesus Is Love”. We read scripture that told about Jesus’ love and that he commands us to love each other. It wasn’t just a good lesson for the quads’ but a good one I could be reminded of every once in a while.

John 15:12 This is my commandment: Love each other in the same way I have loved you.

John 15:17 This is my command: Love each other.

We talked about how easy it is to love those who show us love, how it’s easy to love those who we consider loveable, nice, kind and “deserving” of love. What about the people who are hard to love? The kid at school who doesn’t always act or talk nice? Perhaps your sibling when they make a bad decision in someway that hurts you? Honestly, some days it’s hard to show love towards difficult people or in difficult situations. Jesus tells us plain and simple… “Love each other”. Period. No if’s, no stipulations.

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The activity that went along with the lesson was to write a “Love Letter” to someone special. After discussing different ways we can show love to those around us, each of the quads’ picked ONE person to write a letter of love to. A simple message that would show Jesus’ love and hopefully brighten the day of each recipient. Being “big” kindergarteners, Brody, Baxlyn, Kylee & Korbin were excited to get to write the letters themselves and practice sounding out their words as they did their best to spell what they wanted to say!

Between the four writers and one busy Blade, I somehow only managed to get pictures of Brody & Baxlyn during the activity… boo. Here’s Broman working to hard addressing the envelope being dropping it in the mail…

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Here’s a shot of Kylee’s finished product. She kept her letter of love short and sweet. I love how their confidence is building as they start to try to spell words themselves. So so precious! Her letter translates “U R Beautiful” accompanied by a heart…

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Miss Baxlyn on the other hand could sit and write/color/draw all.day.long. While I’ll keep who her recipient was anonymous, I can tell you she POURED every thought she had into her letter, filling up the page both front and back. This little girl’s heart and kind spirit is simply amazing and makes me so proud. I can only hope the recipient of her letter can feel the love she put into it!

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Their finished letters, addressed and ready to be delivered! Who knows, you may be one of the lucky ones that received (will be receiving) one of these ;)

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Friday, December 12, 2014

Advent Calendar Fun! {Jesus Is Awesome}

I helped host a Shopping Night last month for our local Moms of Multiples group. One of our vendors made these AWESOME Advent calendars and I knew I had to have one the moment I saw them. We’ve always had Advent calendars of some kind whether it be opening little boxes to see what’s inside each day or a simple move-the-marker-to-the-next-date on the Christmas decoration that is hung on the wall but this, this was so unique! There are 30 (I believe) lesson cards to chose from and each lesson highlights a specific attribute of Jesus (Jesus Loved His Neighbors, Jesus Was Obedient, Jesus Cares For You…etc.). Each card has several Bible verses on it that corresponds with the lesson along with kid-friendly discussion questions followed by an easy, low or no cost activity that ties back to the lesson’s theme!

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Although there are plenty of cards to do a lesson and activity every day of the month, that just ain’t happening at our house ;) My goal, this year at least, is to do at least one a week. Our first lesson was “Jesus Is Awesome”.

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The babes were so excited about the new calendar! We gathered together in the living room, spent a few short minutes reading our verses and answering the given questions and moved on to the activity for the day. In this particular lesson we read several verses in the Bible about how awesome Jesus is. We then discussed awesome, wonderful, beautiful things we’ve seen and why they amaze us. Our activity for this lesson was homemade snow-globes!

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The back of the lesson card listed all the supplies we needed (which I just happened to have at home already!) as well as the directions for making our globes!

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We gathered our jars, glitter, glue gun and small figurines we found around the house and each kid choose which they wanted…

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Korbin was the only one who wanted his snow-globe to be Christmas themed. He found a wooden Christmas-looking tree from their train set to use. We simply hot glued the figurine to the inside of the jar’s lid, filled the jar with water, added a few pinches of glitter, screwed the lid on really tight and gave them a shake! It was as simple as that and they turned out super cute!

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Brody chose this little army man. We had to chop his legs off in order for him to fit into the jar, but it worked ;)

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Our finished products…

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Baxlyn

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Korbin

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Kylee

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Blade (Elmo, but of course!)

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It’s been several days since we made our snow-globes and they’ve held up well. I was afraid the kids would try to unscrew the lids (because that’s what anyone’s kids would do, right?!) so at first I attempted to add glue to the lids and then screw them on really fast so they’d be stuck for good. Yeah, don’t do that. It was a mess and I couldn’t get the lid to seal at all. I just tightened them really well and, luckily, the kids haven’t messed with them.

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If you’re interested in having one of these awesome advent calendars for yourself (or a loved one!), check out Laura's Etsy shop by clicking here! If you feel it’s too late to order one for the holiday season, order one anyways! The calendars can actually be used year round. The large card that reads “Let Every Heart Prepare Him Room” can be replaced with this one…

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The lesson card clip can hold a family photo throughout the year until you start the lesson cards again! The black area at the top right is a little chalkboard so you can write whatever you wish. LOVE!

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We’ll share our next Advent Adventure soon!

Sunday, December 7, 2014

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!

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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.)

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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!

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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!!!

Wednesday, December 3, 2014

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!

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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!

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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!

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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 ;)

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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…

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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!

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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!

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 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 ;)

Monday, December 1, 2014

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!
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