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!

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 ;)

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!

Kylee & Brody – Botox {Round 3} What an Update!

Boy what an update do I have when it comes to Botox injections! Kylee & Brody just received their 3rd round of Botox (May 15th) and this time we had/are having a completely different experience than the previous times. See their first two rounds here and here. Those of you who have followed our story for a long time know the history, but here’s an overview for any newbies to our blog. Brody & Kylee, born at 28w5d gestation, suffered Intraventricular Hemorrhages (aka brain bleeds & IVH). Their IVH left them with permanent damage and resulted in Cerebral Palsy. Kylee was diagnosed with Hemiplegia CP (where one side of her body is affected) at around 9months of age and not long after that, Brody was diagnosed with Diplegia CP (both legs affected). They both have been in therapy since being discharged from the NICU and it’s been a constant battle to try to help with their physical development/balance/coordination and tone issues. Botox is used in CP kiddos to help “temporarily paralyze” the tight muscles. The injections stop the signals between the nerve and the muscle, relaxing the muscle and reducing stiffness. Botox only affects the muscles that are injected and once the muscles are relaxed, therapists are able to stretch the muscles and stimulate normal growth.

Today I’m focusing mostly on Kylee’s left leg/foot. Her CP is most noticeable to the eye and is easy to see in pictures. It’s fairly easy to see something is “different” about her walk where unfortunately Brody just seems to be really slow and I’m afraid is mistaken as lazy sometimes. He is very weak through his trunk and legs and struggles to walk/run fast. I’ll start with pictures of Kylee’s foot BEFORE this round of Botox. Again, this is her 3rd round but Botox is temporary and only lasts a few months give or take. You can see her entire leg twists inward, especially her foot which makes these cute little dainty sandals nearly impossible to wear…

I couldn’t bear to zoom in on her foot here and crop out Blade’s precious cheeser face… seriously, how CUTE is he?!?!

You can see more before pictures on THIS post as well as a link to see her run (which has worsened tremendously since February).

This is Brody & Kylee just a few weeks ago on their way to Cook Children’s for their Botox. Notice it’s daylight outside? This was our first treatment done in the neurologists office with NO anesthesia which meant we didn’t have to get up at 3am – YAY! Their previous injections were done by a different neurologist. We only saw insignificant results (if any?) and for other reasons as well, we chose to switch doctors. This round was scheduled with Dr. Acosta, a doctor who came HIGHLY recommended by several parents as well as Brody’s neurosurgeon, Dr. Honeycutt. We were also told her her orthopedic surgeon “if anyone can hit the specific muscles Kylee needs, it’s Dr. Acosta”. Upon meeting with Dr. Acosta several months ago, he informed us that he prefers to do his injections in the office. Each time before we went to the operating room, the babes were put under anesthesia, spent a while in recovery..etc. It was always a LONG day for all of us.  Dr. Acosta insisted a little “happy juice” to silly them up was all we needed to get through the procedure which literally takes seconds. I was a bit hesitant, but trusted his judgment and agreed to do it in office.

Within minutes of getting to the hospital, a sweet lady came in and surprised Kylee & Brody with a therapy dog named Chanel! So cool and SO unexpected! I figured we just got lucky and were there when Chanel was scheduled to work but I learned that she was there FOR them and was there to stay for their entire appointment! The lady told Brody & Kylee that Chanel was a quadruplet too and that her quadruplet siblings (two girls and one boy) were also therapy dogs! As you can imagine, Brody & Kylee were in HEAVEN!

 The lady sat and talked to Brody & Kylee about what was going to happen during their visit that day. She explained they were going to get happy juice, get a few pokes, that Chanel was going to be with them the entire time and that their only job was to sit still like a statue when it was their turn. She then let Brody & Kylee play with Chanel, brush her, play fetch with her, feed her and so on.

 

The nurses offered Brody & Kylee a choice of either sipping their happy juice out of a small cup or having a nasal spray (much like the flumist). Kylee chose the cup while Brody went with the spray. When they went to spray Brody’s instead of sniffing inward, Brody, of course, blew out of his nose landing a good amount of the meds on his shirt. Kylee managed to hold her happy juice down (puked it up last round) and within minutes was LoOoOpY. Dr. Acosta asked which kid wanted to go first and Brody – NOT LOOPY AT ALL - stood up to the plate. I just knew this wasn’t going to be good, he wasn’t the least bit affected by the happy juice. Kylee and I, along with nice lady and Chanel went into the room next door in case Brody freaked out (no need to let them see each other’s torture, right?). Brody ended up receiving a total of 8 shots, 4 in each leg and didn’t cry until the very last one. Bret & the doc said he was SO brave! Dr. Acosta came right into Kylee’s room. She was so far gone, she couldn’t even tell you her own name, but when it came time to get the injections she somehow knew exactly what was going on. Chanel sat on the table next to her and it took three of us to hold her still but ultimately Dr. Acosta successfully administered 4 shots to Kylee, 3 in the leg and one in her left arm, all within about 20 seconds. Kylee then went in and out of mood swings for the next hour or so…one second she was cracking up, the next she was crying, then she would nearly fall asleep and then happy as could be again. Quite an entertaining scene as we left the office for sure! Here are a few “after” pictures of Kylee during her happy moments ;)

Now for results. I’ve never been able to show you huge results in follow up posts before but am SO happy to say that just weeks later we have seen HUGE progress with Kylee’s foot! Within just two weeks we were noticing (as well as her physical therapist AND teachers at school) her foot staying in a MUCH better, more natural position. Seriously like night and day with the positioning of her foot. Dr. Acosta hit those muscles responsible for keeping her foot tilted and turned to the left dead on and they now don’t have control like they did before. Here are the after pictures. I simply asked Kylee to stand in front of me. I didn’t manipulate her foot one bit in these next pictures – crazy difference!

You may remember Kylee getting fitted for a new AFO (brace) back in February. Unfortunately it didn’t work out for her for several reasons. First and foremost it hurt her and secondly it didn’t hold her foot in the position we were aiming for. While we didn’t expect it to help rotate her foot to face forward, we were hoping it would keep her from walking/running on the side of it (like pictured in linked post). Her tone was so bad that it overpowered her brace, even with straps secured tightly, and her foot held it’s awkward position inside the brace, making it pointless in the end. After several attempts at altering the brace, our Syngery office (now bought out by Hanger Prosthetics) agreed to make her a new one to replace it. They created a smaller, slightly more flexible SMO and Kylee tolerates it much much better than the AFO she had. While I think the Botox has made the most difference for her, a better-fitting brace only helps!

Like most people with CP, Kylee & Brody’s tone really kicks in when they’re excited or doing physical activity. Most people wouldn’t notice Kylee’a arm/hand being affected, until she goes to run that is. When in motion like running, or even walking fast, her tone kicks in and her arm naturally holds tightly to her left side and her fist tightens just as her foot looks much worse when she attempts to run. Here is a picture of Kylee this past week during physical therapy doing a throwing and catching exercise. Normally during such a physically challenging task, her foot would turn inward. You can see here that her left foot is far more relaxed and facing forward as it should…

Below is another “in-motion” picture of Kylee walking – sorry so blurry. Again, normally her foot would be turned significantly but you can see, even in motion, it’s staying pointed forward!! HUGE!

 A couple more after shots…

Now….sigh… with the good comes the bad.

While the Botox did exactly what it should, weaken the muscle, the Botox also did exactly what it should…. weaken the muscle.

Kylee and Brody are both naturally at a higher risk for falling due to their CP. It’s not uncommon at all to see either of them, especially Brody, fall multiple times during any given time. Whether walking from the table to the sink or playing on the playground, our sweet Brody falls far more often than the average 5 year old. Now that we’ve added (successful) Botox injections to the picture, their legs are weaker than they were before. All in all this is a good thing because we, along with their PT, have an opportunity to really stretch the muscles that were, a few weeks ago, extremely tight. This also means that walking, running and everyday activities are harder than usual. Kylee & Brody both have a had a really hard time during their last few tee ball games and can (literally) hardly run at all. They can make it mayyybe one fourth of the way to the base they’re running to before they tire out. They actually had their last tee ball game this afternoon and Bret joined them on the field to help them run from base to base after they were up to bat, so sweet to watch :) Kylee, who always appears to walk with a limp, looks like she has suffered a big injury with the way she’s walking now. Although it looks like it, they’re not in pain, but just really weak. Kylee says “my legs are not working good”. The muscles that she is (they are) being forced to use are not used to working so we’re working on strengthening all we can. We’re praying over the next few weeks Kylee & Brody will gain a little strength and not have such a hard time.

Like I mentioned above, Botox is temporary. It’s a “Band-Aid” as some would call it. Eventually it will wear off and we will likely be back where we were assuming the tone kicks back in, which likely it will since Cerebral Palsy is neurologically based. We will re-visit Dr. Mayfield, her orthopedic surgeon, in 2 weeks to let him assess her and give us his thoughts regarding the SPLATT surgery we mentioned before. Brody will also be seen by Dr. Mayfield for the first time that day. For now, we’ll stretch and play and stretch and play while we try to strengthen their little bodies. Please keep our littles in your thoughts and prayers.

For those of you who mistakenly think prematurity doesn’t last forever, please know that sometimes…. it does. While I’m INCREDIBLY thankful my sweet babies are here today, I HATE that they continue to go through so much all because they were born so early. Again, I am so proud of all they’ve overcome and vow to do whatever it takes to help them thrive and succeed.

Brody & Kylee, know you are loved, my sweet babies. In your weakness you are SO so strong. <3

Our Determined Daughter {Kylee Mae}

If you’re a regular follower of our blog, you know that Kylee was diagnosed with Hemiplegia Cerebral Palsy at 11 months/8 adjusted. If this is new information, you can learn more history here and here. As we’ve been told by many docs that it would, her conditions are slowly getting worse over time. Her left leg, ankle & foot are our main concerns at this point in time. Kylee’s left foot has always turned inward and unfortunately an AFO (brace) won’t help correct it’s positioning due to her entire leg/hip being involved. Below is a picture of the bottom of her feet to give you a close look. Her left foot is also slightly smaller than her right (very common with Cerebral Palsy) as the bones often develop and grow at different rates. Her left foot fits a size 10 shoe and her right is a 11.5.

More pics to show the inward turn of her left foot…

Not only is her foot turning inward more than it has in the past, she is now walking on the outside of her foot as well. It doesn’t seem to bother her at all but it looks awfully painful watching her run and it looks as though her little ankle could snap easily. As she runs, her body tenses up on the left side (arm and leg) causing that foot to turn inward even more. She ends up literally hopping over her left foot with her right.

(Click HERE to see a short clip of her run. Excuse the poor quality.)

Over a long period of time walking & running like this, her condition will likely worsen and could affect her overall posture, balance and spine as well. We recently met with a new neurologist, Dr. Acosta, at Cook Children’s in Fort Worth and plan on doing several more rounds of Botox on both Brody & Kylee, hoping to get deeper into the muscle in order to loosen things up to allow good stretching. Dr. Acosta also strongly believes Kylee has Tibial Torsion which is where the tibia/shinbone is rotated out of position. Kylee has also been referred to an orthopedic surgeon there at Cook Children’s to further discuss the severity of it all and possible treatments for her left foot. Surgery is sometimes an option to help correct a condition like Kylee’s but as always, it comes with risks. I’m trying not to stress the surgery option until we meet with the orthopedist next month.

Overall Kylee has a GREAT attitude and handles having a disability very well. Lately she’s been asking more questions about her left foot, her left hand, why she and Brody have to see so many doctors and why Korbin and B don’t. She sometimes asks why she can’t do certain things that Baxlyn can without falling and why she can’t walk in little princess heels and other cute shoes like Baxlyn. It hurts my heart as these are just some of the beginning realizations she will come to but yet I’m happy she handles it well. Sometimes it’s hard trying to explain such things to a not quite five year old, but I try. I desperately try to find that perfect balance between being honest and open with them about their birth and scaring them into thinking there is something “wrong” with them. I want them to know just how strong they were (and are). I want them to know that God has a plan for them. I want them to know that with determination they can do anything, despite a disability or diagnosis . I want them to understand some day just how PROUD we are of them…and I want them to be proud of themselves as well. For now they can understand that “they were very little and sick when they were born. The nurses and doctors helped them feel better and now lots of doctors try to help make sure they are healthy and strong.”

For the time being, we’ve had Kylee fitted for a new brace. We’re aware that the brace will not help the inward turning of her foot but we are hoping it will help the “rolling” of her foot causing her to walk on the outside of it. This will be Kylee’s 4th brace, the 3rd on her left foot. She’s become a pro at being fitted and it doesn’t bother her a bit these days!

Kylee being fitted for the first time in June of 2010

 Kylee today :]

After anxiously waiting for a couple of weeks, we went to pick up her new brace yesterday. She was so excited to see how it turned out with the butterfly pattern she chose along with pink straps.

Here she was this morning ready to head off to pre-k and show off her brace. She insisted I roll her pants up so that all of her friends could see – melts my heart. I LOVE that she is proud of her brace and that it doesn’t affect her confidence. I can only pray she can keep that spirit as she continues to grow.

I’ll end by saying as Brody, Baxlyn, Kylee & Korbin get older I find myself questioning how much I should put out there for all the world to see. While I blogged just about everything when they were babies I find myself pulling back just a little now days. One day I know they’ll look back to read all I have written and I don’t want them to feel as if I’ve put their entire lives on display for the world. That being said there are SO many families who can learn from our experiences. I’ve received countless emails from parents who delivered premature babies, found our blog and saw a glimpse of hope for their little one. Whether potty training, trying to keep clothes on your kid who likes to be naked or seeking possible treatment options for cerebral palsy, sometimes another mother’s point of view can be helpful! It’s for that reason, for now, that I continue to share what I do!