Sunday, June 1, 2014

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…

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

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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.

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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!

Botox3 6 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.

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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 ;)

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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!

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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!

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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…

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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!

Botox3 13 A couple more after shots…

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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

5 comments:

  1. You and your precious little ones are amazing! We will keep you and yours in our prayers ! You are an inspiration!

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  2. Just one blessing after another watching these precious kiddos lives! Love you all, Aunt Beth (AKA Sis)

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  3. My 4.5 year old son (who wasn't a premie or multiple) also has cerebral palsy and has benefited from botox injections. His injections were in his neck muscles to help correct his congenital torticollis.

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  4. I can only imagine how hard it is for you to see your children at their weakest. Hats off to you for your courage and strength to handle such a responsibility! Botox might be a temporary aid, but it’s better than letting them suffer the pain of contracted muscles. I hope you’ll find another solution for their conditions. Just trust what your doctors say, and heed their advice. Hope your adorable kids get well soon!

    George Chambers @ Amani Medspa

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  5. Your kids are adorable! It melts my heart to see young ones suffering from illnesses, but I’m glad you’ve found an aid, though temporary, for their condition. While others think that Botox is merely for cosmetic purposes, you’re one of those witnesses that it can also be used for cure and treatment. Thanks for sharing your story! I wish you all the best! :D

    Cordell Legaspi

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