Sunday, June 22, 2014

Kylee & Doc – Therapeutic Horseback Riding!

That’s right! Our little animal lover, Kylee, is now taking horseback riding lessons and she is over the moon excited!


We’ve had multiple therapists over the years tell us they think Kylee would benefit from therapeutic riding lessons and we’ve never done it. Their sweet Granny Linda mentioned a couple of months ago that she would like to make it possible for Kylee to give riding a try (thank you, Linda!!!!). While each of the quads would love the experience and both Kylee & Brody could really benefit physically from it, we opted to let Kylee take lessons alone to start with. Something SHE got to do, that was special and just for her, something that set her apart from her brothers and sister. She is in a 5 week riding program and has lessons once a week at a local, Christian based, facility where trained instructors work with her to improve overall development. Below, Kylee & Linda say hello to another horse while her horse, Doc, gets prepped for their ride.


If you know Kylee at all you know she’s alwayyyyyys loved animals. The ONLY animal that has ever scared her…..are horses, believe it or not. Granted it’s been well over a year, but each and every time we offered to let the babies ride the horse at the zoo, Kylee was terrified and wanted nothing to do with it. She’s had maybe one or two pony rides over the past couple of years at festivals and such which has gotten her a little used to riding such a large animal, and apparently that was all she needed. We went to the ranch a few weeks ago so she could meet the horses and she fell in love instantly! Her first lesson was a week ago and she couldn’t wait to get on!


Kylee is in private lessons so she is the only one in the arena during her designated time. She had a total of 5 trainers/volunteers walking with her the entire time she was on the horse. Talk about attention ;)


I tagged along for her first lesson to snap pictures, of course. Not sure if it was the Batman shirt I was wearing or the braided pigtails, but I was asked by several people if I was Kylee’s sister! I get the “are you the babysitter” question pretty often, but never the sibling. If it means I’m looking young in some people’s eyes, I’ll take it ;)


Linda and I sat in a nice shady area watching her do her thing! She enjoyed every minute of it and her big grin never faded. She loved saying “Walk on, Doc!” to get him moving! I couldn’t help but laugh as she was easily distracted by dogs she would see out on the farm that she had met previously. We could hear her from across the arena asking “where was that dog? where did he go? why was he back there?" where is so-and-so?”



She practiced guiding the horse and holding the reigns tightly with both her right hand and “lefty”. She weaved in and out of poles and practice putting rings over them with both hands as well!


Once her riding time was over she got to help lead Doc back into the barn and put up equipment too!



Can’t wait to see how she continues to progress and if she develops a love for riding. If you have a child or loved one who has benefited from horse therapy, leave a comment or email me! I’d love to hear all about your experience!

Thursday, June 19, 2014

Father’s Day – Beach Style!

After church we headed out to Papa & Lynn’s house to spend Father’s Day! Below, Papa with his GrandQuads! (Blade was attached to Daddy, of course!)


There is a beautiful lake near their house with the perfect beach for kids. Our crew has never had a real “beach” experience so they were thrilled to learn we were spending the afternoon in the water!


Baxlyn, Korbin & Brody having a blast waiting for waves… if you could only hear their laughter!


Like always, Blade was right there in the mix of things, giving me mini heart attacks as he ventured out like a big boy. At nearly 30lbs, he does well in his Puddle Jumper. Walking in the sand against the waves tipped him over quite a bit but he thought it was hysterical!


While I LOVE water and LOVE to swim, I’ve never been one for lakes or oceans. I like to SEE what’s creeping up on me below the water and the thought of a fish even getting near me terrifies me……eeeekk! While I enjoy going out on a boat occasionally, I have no desire to jump off into the deep unknown for a quick swim! One of these years, I’ll get to vacation some place like you see in the magazines…. a beautiful white sand covered creature-free beach, clear blue waters, tropical fish that you can see a mile deep….ahhhh ;) Luckily, we were at this beach for several hours and the only living thing I saw in the water/on the beach was one little fly – now THAT I can do!


My love and I. We rarely take picture together anymore. This one I forced him to take while snacking on sunflower seeds, hence the look.


My sweet girls. They have no fear and would have kicked their way out into the middle of the lake had I let them!


Me, Papa & Kylee who couldn’t stand to take moment to smile for a picture and miss out on more fun!


Korbin & B. Two peas in a pod.


Lynn & Korbin relaxing in the sand…


Blade and I playing a game of “I get youuuuuu” around the tree :)


I think Baxlyn probably enjoyed the water the most. She’s like me in OH SO many ways and has always been a fish out of water since she was a baby. This smile never left her face the entire time we were there!


Papa & Brody :)




Back at the house,  Brody double fisting the watermelon before enjoying a delicious rib dinner!


This sweet boy did SO good the entire day. He finally had had enough around 8pm and crashed quickly once we got in the car to head home!


People are always amazed that I capture so many pictures but I tell ya it’s hard. All day I kept telling myself to remember to get a picture of the 5 with Bret…. did I? Well, of course not. UGH! I did manage, however, to capture a “real” non posed picture of Korbin, Kylee, Baxlyn & Brody joining in on a rare group hug! So crazy, how big these little people are getting…


Thanks again, Papa & Lynn, for a fun-filled day! We can’t wait to come back and do it all again!

Thursday, June 5, 2014

Our last T-ball game!


Brody, Baxlyn, Kylee & Korbin had their last tball game last week! I’d say they all enjoyed their season but they were not too sad it was over. It will be interesting to see what their interests are in the coming years. Bret and I were fairly athletic growing up so we’re kinda *hoping* one will follow in our footsteps, but who knows! My little Pirates left to right: long legged Kylee, Korbin, Miss B & Brody!


The crew with Coach Z (and little Aaron photo bombing the shot!) at the Cicis Pizza celebration after their game was cut short due to rain…booo!


They were all pretty excited to receive their very first and very OWN trophy for having such a great season…


L-R Baxlyn, Korbin, Brody & Kylee (check out her left foot – looking SO good!)


 Congrats my little Pirates on your awesome T-ball season!

Wednesday, June 4, 2014

Letter-Hat Day!

So today was Letter-Hat Day at school. It’s projects like these I imagine will be a HUGE challenge when it comes to having quadruplets. Art projects, science projects, research papers TIMES FOUR….Ahhhhh! Luckily we have close friends and family that I’m hoping we can depend on over the coming years for extra hands ;) The quads’ “Uncle Chirs” is SUPER artistic and helped us create Brody’s hat last year, he jumped at the chance to help with their hats again! Brody, Baxlyn, Kylee & Korbin each chose their letter and helped us come up with an idea for each of their hats. The get to wear their hats at school today and show them off in a little parade! Here are the final products…


Brody was up first and chose to do a chef’s hat. He’s OBSESSED with Shogun, a hibachi grill type restaurant where they cook in front of you, so we did the letter “C” for Cook/Chef. Chris drew a grill, fire (because Brody is also obsessed with fire), a chicken leg, spatula, and other cooking items for Brody to color in! The poster board we used started off about 8 inches taller than what you see here. We debated sending him to school in a 4 foot tall hat but decided to make it a bit easier on the teachers ;)


Baxlyn is super into rainbows lately so we went with this… it’s a little on the… ahem… large side, but she loves it ;) She chose the random letter “N”.

hatday6 Kylee was dead set on a princess crown. She chose the letter “B” for Brooke (the dog) of course!


Ok Korbin’s, I won’t lie. Chris and I came up with this design. He originally wanted a Wizard hat but we couldn’t get the cone shape down just right. After some doodling we came up with elf ears, which you can clearly see, turned into Yoda. Although he has no clue who Yoda is, he LOVES his hat an enjoyed “scaring” the assistant principal this morning when she went to help him out of the van. Silly, dude!


Then we have sweet Blade. At 19 months old he has no idea he’s younger than the rest of them. As far as he’s concerned EVERYTHING they do, he does too. He insisted on wearing each hat, crawling up into Chris’ arms and cheesing for a picture like the others. Oh this boy!


Thanks again, Uncle Chris, for helping us with the second of MaNy projects!

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

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