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

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!

Developmental Check Up: Braces Round 2

Brody & Kylee had their 6 month check up with their developmental pediatrician a couple of weeks ago. Both are a bit behind in most areas but are making tremendous progress in getting where they need to be and “catching up” after their rough beginning. I always love these long appointments with our developmental ped. as we get a great, thorough examination and look at exactly where they fall developmentally and best of all, I always walk away with a renewed sense of pride knowing how far they’ve come! They both weighed in at about 31lbs and great news, Kylee’s head circumference is not only staying consistent with her own growth curve, but it’s on the charts!

This appointment Brody was “officially” diagnosed with Diplegia Cerebral Palsy, a form of CP affecting the legs. He’s always been a bit off when it comes to balance, coordination and such but lately he’s getting worse. His case is mild, thank goodness, but affects his daily life nonetheless. He has trouble with motor planning which makes little things like stepping up and down curbs or different surfaces, running & jumping hard to do. Despite stretching his legs on a regular basis he is becoming tighter and tends to tiptoe more than we’d like.

Sweet Kylee still battles her Hemiplegia CP as she continues to grow as well. Unlike Brody, she has started to jump and is able to get both feet off the ground – huge deal!! She’s started to run too! You can really see the way her CP affects her when she does her little run. The left side of her body gets pretty tense, her left arm comes in and fisted towards her side and her left foot turns in quite a bit, as she hops with her right foot over it. I’ll admit I think it’s adorable and I love watching her. The best part is she’s got a HUGE smile on her face any time she’s running and is clearly very proud of herself!

Brody & Kylee both are being fitted for leg braces to try to help them with their CP. This will be round 2 for Kylee and Brody’s first time in them. If you’re a long time follower you might remember Kylee wearing both an AFO & an SMO when she was 17 months old. Although she wasn’t walking at that point, she did well with the braces and they didn’t seem to bother her at all. She and Brody will both be getting AFO’s this time, Brody on both legs helping to hold his feet flat and giving him a good stretch and Kylee just on her left, guiding her foot to a natural position when she walks/runs. 

They were both fitted last week for their braces and did great during their appointment. Although painless, in order to make their braces, they have to have molds made of their little legs . Kylee was NOT A FAN during her last casting, so I was a bit nervous at how they’d do this time. It was nice this time around, being able to explain what would happen before we got there. I had showed Kylee and Brody pictures from when Kylee was little and told them “yay, you get to get braces!”…which of course led Korbin & Miss B wondering why they don’t get to have braces…ugh, can’t win! Anyways, I told them both that Mr. Spencer was going to put mud on their legs and it was going to be SO SILLY!

Once we got in the room, we asked who wanted to go first and Kylee was ready and willing. She plopped up on Daddy’s lap with a smile on her face and was excited about the “silly mud”!

Brody sat close by keeping an eye on everything that was happening and Kylee sat and stole the heart of Spencer as he casted her little leg. She carried on a sweet little conversation with him the entire time…

Here she’s helping him by holding the “noodle” in place…

My sweet girl and I!    Brody was up next and did great as well. He wasn’t stoked about the process but managed his way through it. We were cracking up the entire time over this look on his face…

Again, Kylee right in on the action, helping hold the noodle as Brody’s cast was cut off…

Once all was said and done he was all smiles and told Spencer “I fink I need a sticker now.” LOL!

 

I can only hope they do as well with the actual braces as they did with getting fitted for them. They should be receiving them in another week or so and of course, we’ll update you!

Kylee & Brody's Developmental Check Up

Bret and I had a double date yesterday with Brody and Kylee! We spent the whole afternoon with Dr. Roberts (their developmental pediatrician) bragging on them and showing off their new skills. She was THRILLED to see them both walk into her office for the first time and said multiple times she couldn't believe her eyes and how phenomenal they are doing!

Do they not look like they're 5 years old in this picture?! They look HUGE!

Brody was up for evaluation first and did well overall. After various tests (cognitive, fine motor, expressive/receptive language...) he scored between 22months-24months of age, just where he should be! Although he's been walking for months now, he still resembles a baby deer to a degree. He has a hard time, even on flat surfaces sometimes, with his balance and coordination. When we play outside for example, he prefers to stay on the porch, avoiding the grass or any other challenging surfaces. We had X-rays done a few weeks ago to rule out any abnormalities with his hips/gait, everything looked normal, thank goodness. Brody does have some tone issues tho, through his ankles which leads Dr. Roberts to believe it's safe to say he has VERY MILD Diplegia CP (cerebral palsy affecting the legs only). You can learn more about this particular type of CP here. This doesn't mean a whole lot to us and won't change a thing when it comes to Brody and his therapy treatments, we will continue PT through ECI and once he "graduates" from ECI(at 3 years old) he will likely need additional private therapy. Brody weighed in at 27lbs 1oz and was 33 1/4 inches tall!

Kylee had a great check up as well. It was less than a year ago we were pretty concerned with Kylee's head circumference and the word "microcephaly" was added to our whole new vocabulary since having the babies. Her head size is now right on track and she is showing TREMENDOUS growth in all developmental areas. 3 months ago, she hardly said any words and today she has too many to count and even has some 2-3 word phrases. It seems like once she learned to walk, she has just taken off in all other areas at full speed! She scored a little bit higher than Brody in some areas, landing her in the 23-24month range, again perfect! Dr. Robert's had mentioned at a previous appointment that one of Kylee's legs measured a tad bit longer than the other. Yesterday, her left leg (her affected side) measured half an inch shorter than her right. We were told this is common in kids who have hemiplegia cp and that it's often that the bones on the affected side don't grow at the same rate as on the "good" side. Right now this causes Kylee's walk to look a little "Bambi-like" too. For now, her docs will keep an eye on it and treatment may be given when she gets a little older. Our big little girl weighed in at 25lbs 12oz and was a bit taller than Brody at 33 1/2 inches tall! My two little loves picking out their stickers! We're sooo sooo sooo proud of you Brody & Kylee!