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

Rewind–Preschool for Brody & Kylee!

I mentioned a while back that Brody & Kylee started preschool. They qualified for the PPCD class at our local elementary school due to health impairment/cerebral palsy/prematurity. The approval process is quite extensive and we got a start late so they only caught the last two months or so of school, which was a good way to ease us into the whole new world. They did great in school and loved every minute of it and Bret and I were happy as well. We had the opportunity to sit with their teacher, their principal, assistant principal and several other of the staff members to discuss everything about Brody & Kylee. From their issues in NICU to the long term effect it has had on them to their spunky personalities and struggles today, we covered it all! Much like their earlier days in ECI we came up with a game plan for each of them and set goals that we would all work on together, as a team, with Brody & Kylee. I was SO relieved to learn that they would work on things like putting on and taking off shoes, putting on/taking off shirts, climbing stairs, washing their hands properly…etc. along with basic learning like letters and numbers. I work with all of them at home on a regular basis but have a hard time teaching different kids in different ways to be effective with each one. We’re hoping that we can have PT and OT on board when they start in the fall which would only help even more. Brody and Kylee still struggle with tasks that their peers have had down for a while but are making process as time goes by!

Our sweet peas on their last day of school!

A little hard to see but here is Mrs. K’s person and next to it, Kylee’s!

Brody has very little  interest in coloring, tracing or writing at all. Creativity is not his thing. One task, specifically for him, was to draw a line between two given points as well as copy a “plus” sign. HUGE progress!

At this age, if they all do the exact same task, color the exact same picture or do the exact same craft, Bret and I can tell you whose is whose (if they are unmarked) with almost 100% accuracy. Their little personalities SHINE when it comes to their artwork. Here we have Kylee on the left who completes the task, leaving a few blank spots and Brody on the right who glued a couple of pieces on his number 5 and called it a day… I couldn’t help but laugh when I saw these. Yes, that would be Brody!

Kylee on the left & Brody on the right. They have stations at school and painting is a favorite for sure…

Brody copying the letters to spell his name

One of my favorite things about them being at school is obviously the fact that I get a break. Not only is it such a difference having 2 less kids, but these two kids are the ones I need the break from. Forgive me if that sounds horrible, nobody loves those two sugar plums more than their Mama, but they require a lot of individual attention and it’s tough sometimes. I think the hardest part of school was getting them up so dang early. They only went for a few hours a day but waking them up at 6:30am was new for all of us. Despite being up super early, they were always full of energy and had huge smiles on their faces each time I picked them up. Every day Kylee would tell me that “so and so helped me put my jacket on!” “so and so helped me with my backpack!” “my friend helped me and lefty put on my shoe!” – the fact that she has made friends and that they happily help her makes me SO so happy. I can only hope kids continue to be sweet and helpful as they get older. Brody never talked much about “friends” at school. He was always in a rush to jump in the car to see his “Tug” (yes, that would be Blade’s nickname around here. Not t-u-g as in tugging on a rope, but “Tug” as in SUG-ar…does that make any sense at all?). Another one of my favorite things is looking at their folders each day. I’m like a kid on Christmas, seriously. I love seeing their work and the sweet notes their teachers leave me. This one brought tears to my eyes…

While this one cracked me up. Inquisitive, yup, that’s Brody!

They had a day during their last week of school where they had to make a hat to wear with a letter of the alphabet on it. We chose “B” and “K” for their names and decorated them with things that also started with those letters. They’re were so excited to wear them to school. Kylee ran around frantically before we walked out the door that morning “MOMMY! WHERE is my hat?!?!” not realizing it was on her head! Notice Brody’s overalls? He thinks he is one cool farmer in them

“K” is for Kylee, kites and kittens!

“B” is for Brody, banjo, boots, and beans! –Shout out to Uncle Chris for the help on Brody’s sweet hat!

I had to include this picture of the construction of Brody’s hat. Uncle Chris (seen on the floor carefully tracing Brody’s ahem…unique head shape) is a perfectionist and wanted his hat to be just right! I’m not sure Brody understood exactly what was going on as his Papaw and Uncle Bradley held him upside-down! Oh gosh, just thinking about it cracks me up…his arms out straight to the side like that…bahaaa!

Thought I would share some of their Teacher Appreciation Week gifts. In addition to a couple of small hand-made tokens of appreciation made by Brody & Kylee (which I forgot to photograph, shame on me) we sent along some goodies too! Although I wish I could take credit for these adorable gifts, pinterest deserves the recognition!

Chocolate chip cookies in a jar with a note that reads “Thanks to you…We’re Smart Cookies!”

What teacher can’t use new pencils?! My favorite part is that this is CHEAP to do!

Pinterest may get the credit for my homemade laundry soap, but putting it in a jar and tying a cute little measuring cup to it with a satin ribbon is allllll me ;) Props to my sister for the cute wording “We’ve had loads of fun in your class!”

I added the recipe and directions on the back…

These two amigos have had a blast having some alone time too. If you’ve followed our blog for a while, you know Korbin and Baxlyn have a special bond. That bond has no doubt strengthened since getting more time away from Brody & Kylee. They love their brother and sister, don’t get me wrong, these two have just clicked in a way that’s hard to describe. You hear about that “twin thing” that some multiples have and these two have it for sure. It’s bittersweet that these two don’t qualify for the PPCD/Preschool class. They have no concerns of major delay which is good, but they don’t get to join their brother and sister which is no fun. There’s a small teeeeeeeny tiny chance they will qualify for next year based on income to dependents in the household but we won’t know for another month or so. I am PRAYING that somehow we’re able to send them as well and will be forced to come up with something as an alternative if it doesn’t work out. Now that summer is here, Korbin just KNOWS he get’s to go to school when it starts up again….eeek. Fingers crossed, Buddy!

Blade, Baxlyn & Korbin staying busy while the others are away. They all ALWAYS include their little brother. It is the sweetest thing. Whether playing “zoo” in one of the bedrooms or “camping out” in the playroom, they always want Blade right there with them!

Here’s to hoping school stays this great as the years approach us!

Botox–Follow Up!

So it’s been two months since Brody & Kylee received their Botox injections. Many of you have commented asking about how well it worked and wanting updates on their progress. Honestly we can’t tell a huge difference. A difference yes, which is good, but not a HUGE difference. If insurance hadn’t covered most of the cost, I’d be reallly bummed. Kylee had received injections in her left hand as well as her leg. The Botox in her hand has helped with the tightness she had. Although she obviously still prefers her right hand and struggles with her left she is able to grasp easier and has better control over her thumb. She has slightly better range in her left foot but again, still struggles. Bret and I have noticed her right foot turning inwards now as well. Grr. Their neurologist recommends we do another round of Botox (expected. most kids undergo several procedures) next month only in her leg, in hopes to see even more improvement. They have also ordered X-rays of her legs/hips to rule out other issues that may be going on.

We’ve seen ok results in Brody as well. He’s still tight for sure but only tip toes on occasion. Before the injections, anytime he ran or even walked fast or with excitement , his hypertonia would kick in and he would go up on his toes. The Botox has made a difference there for sure, which is good. He too will receive more injections next month with Kylee. Lucky for Mom & Dad, insurance will cover 100% now – thank God for insurance is all I can say – holy smokes!

Blade went along for their appointment while the others stayed with Nana & Aunt Beth!

Mommy’s heartthrob.

Anxiety has really been setting in for Brody when it comes to doctors appointments. “What they gonna do to me?” Poor Buddy :( He and Kylee did great at this appointment. In a way I’m glad they both have some of the same issues, it’s a buddy to have along for the not-always-fun-ride. To my surprise they both weighed in at 35lbs! Kylee has just a smidge on Brody height wise, my tall girl!

For those of you who know Kylee, you know she remembers everything. The minute she saw Dr. Marks, she remembered, even though she was loopy at the time, that he came in to check on her after their procedures in February. She HATED that she had an IV in her arm and as far as she was concerned it was his fault. She looked him in the eye this week and said something like “Why you were there, when I drinked my juice and had a IB in my arm?” lol.

We don’t have a date set for their next rounds of Botox but are looking at sometime in May. We’ll keep you posted!

Also, the Circle of Moms Top 25 is going on once again. If you enjoy our blog, throw us a vote! Click on the link, scroll to our picture and give us a thumbs up!  http://www.circleofmoms.com/top25/Top-25-Moms-of-Multiples-2013?trk=t25_Top-25-Moms-of-Multiples-2013#_

Thanks!

Brody & Kylee–Botox Injections

Thanks to all for the sweet messages, calls, texts and prayers for Brody & Kylee. Being up at 3:30am made for a lonnngg day, but all went well! We’ve been told for a while now that Brody & Kylee, due to their Cerebral Palsy & hypertonia/dystonia (tight muscles), may be good candidates for Botox. Even with physical & occupational therapy, constraint therapy, orthotics and endless exercises and stretches, these two will likely have minor issues due to their CP for years to come. After visiting with their neurologist in December, he thought it would be good to give the Botox a shot.

“Following intramuscular injection, the neurotoxin causes a reversible neuromuscular blockade, creating both muscle weakness and a reduction in tone.” We were told that basically the Botox will temporarily paralyze or weaken the nerve endings allowing more flexibility and allowing us to stretch their muscles more effectively.

Brody received 8 injections, 4 in each leg. Because of his tone, Brody toes walks from time to time and his legs stiffen when he runs or gets excited (diplegia CP). Kylee’s hemiplegia CP affects her left side. Her left foot turns inward and she’s also very tight. The doctor used a special needle to both electrically stimulate the muscles and deliver the medication in her leg and hand. She received 5 injections in her left leg as well as one near the thumb in her left hand hoping to give her more range and a more natural and easier grasp. Kids don’t always have to be put under anesthesia for the procedure but given the fact that they’re young, there’s two of them (one will freak the other out before it’s their turn) and they both were going to receive multiple shots, their doctor thought it was best they were asleep for it all.

We took some video of both Brody & Kylee before their injections doing daily things that show their tone and difficulty. We were told that we won’t see any improvement for 3-7 days. Once we do (hoping we do, at least) we’ll show the before and after videos so you can see for yourself. After talking to many of their doctors as well as other parents of kids with CP we’ve learned most people see great improvement after the shots. The Botox can last anywhere from 2-6months depending on the child and the severity of their tone. Many kids continue treatments as needed. We’ll visit the neurologist again in 2 months to discuss how it worked for our two and if continuing treatment will be beneficial. Here’s a helpful site with additional info: http://www.cerebralpalsysource.com/About_CP/botox_cp/index.html

We had the procedures done at Cook Children’s in Fort Worth, the same place Brody had his shunt placed at 32 weeks gestation. His neurosurgeon and their neurologist work side by side which is a plus for us. It was still dark when we arrived at the hospital. The roof of the building is trimmed in blue lights, very pretty if I do say so myself. Upon seeing it Brody squealed from the back seat “Oooohhhh I’m sooo essited!”

Here’s Kylee after taking her “happy juice” while waiting for Brody to be sent to recovery. Girl was loOoOopy! She attempted to sing her favorite song “Pontoon” by Little Big Town and insisted her name was “Grandmudder”. Bret and I had some good laughs while chatting with her, that’s for sure :)

The procedures were pretty simple and only took about 15mins each. Bret & I went to be with Brody and Kylee joined soon after. Poor dude tried and tried to talk to us while waking up but nobody could make out what he was saying. Once he gained speech he immediately asked “Where’s my coke?”. He had chosen a cherry coke flavored gas as he was going to sleep but apparently he thought he was gonna get an actual coke (which would be a real treat for them) somewhere in the process! The nurses hooked him up with a sprite and that may have been the highlight of his whole experience..ha! I also heard him mumble to the nurse that he wanted to watch the Dallas Cowboys. Mickey Mouse clubhouse had to do ;) The injection sites are so small you wouldn’t even notice them if you weren’t looking. Kylee’s 2 failed IV attempts were another story :/

A few popsicles and sips of sprite later they were ready to go. The anesthesiologist came in and gave the go ahead to have IVs removed. Bret was out of the room and I was over with Kylee only to turn around and find Brody had removed his IV by himself…blood everywhere. Didn’t phase him a bit but freaked his me out until I figured out what had happened!  The nurse came in and Brody proudly told her “you were not here, so I did it!”

It was within just a few hours that Brody & Kylee were up and at it just like normal. No complaints of pain or soreness in their muscles or at the injection site which makes mom and dad super happy! They know they received something called Botox to help them but have no negative associations with the whole process which is great if we do continue treatments. We’ll update soon with their progress!