All That Medical Stuff....

Ahh, where do I start? It's been a relatively low key year as far as medical concerns go. Thankfully nothing major like last winter (seen here and here) has been thrown our way. All but Baxlyn still see their developmental pediatrician, who we depend greatly on for guidance  with overall development, on a regular basis. Thanks to Dr. Roberts, our awesome pediatrician, Dr. Reyes, and the team of specialists we have, our fantastic four are thriving as they grow despite obstacles along the way!

Celiac Disease

Many of you know that Baxlyn was diagnosed with Celiac Disease last March after several years of tummy discomfort. Shortly after her diagnosis, Dr. Russo wanted to have all four of the quads tested as they were all at risk for having it. After simple bloodwork at our pediatrician's office, we were told that Kylee had Celiac Disease as well. We immediately started Kylee on the gluten free diet along with her sister. In November I took both girls back to Dr. Russo to discuss our progress and get results on follow up bloodwork for Baxlyn. Good news we learned that we're doing something right with her diet! Her "number" went from over 100 down to a 9. Ideally we would like it under a 4, but a nine is phenomenal considering where we were less than a year ago. Not so great news is we are STILL dealing with tummy discomfort. Baxlyn went from complaining of her tummy hurting DOZENS of times everyday to only 3-5 times a day, 5 days out of the week. Huge progress but still indicates something is still going on in that little body of hers. I know cross contamination is inevitable sometimes but there are times I am 99.9% sure her meal is free of gluten and she still has issues afterwards. So frustrating! We plan to do another follow up with the GI in a few weeks to discuss further options. We also learned in November that Kylee was MISdiagnosed Celiac months before. He said while one number that is often elevated with Celiac was a bit high, other results from the bloodwork along with the fact that she has zero symptoms, leads him to believe she doed NOT have Celiac. She and the others are all at risk for developing it at any point, but right now, they're all clear. B and Kylee celebrating Kylee's misdiagnosis at Blue Goose with flour tortillas for Kylee!

Baxlyn continues to amaze me with her great attitude while dealing with Celiac. While I've learned a ton over the past 10 months, I still have a long ways to go in helping her learn to cope and learn to live on the special diet. I try to keep a stock of special treats she can have when the other kids are treated to things such as cupcakes, cookies and pizza. Occasionally we find ourselves in situations where she just misses out altogether, and she NEVER (ever) complains. Seriously, yall, she is one special girl with a heart of gold and I'm so glad she is mine!

Eyes, Patches and Glasses - Oh My!

Last update I left you on this subject was that Brody was getting glasses and Miss B was instructed to be patched for three months after being diagnosed with Strabismus (him) and Astigmatism (her). Other than taking a hard fall down the stairs on day one with glasses, he's done great and his eyes are slowwwly looking better as time goes on.

Baxlyn happily did her daily patching for three months, went back and had made no progress so earned herself a pair of glasses herself. She wasn't too bummed and enjoyed picking out both a pink and purple pair. If it were up to her, she would have a pair to match each and every outfit she had!

Several months into glasses, Dr. Chen is still concerned with Baxlyn's left eye. While she's making progress, it's not at the expected rate. Baxlyn is currently back to patching after school each day, for four months this time, in addition to wearing her glasses.

CP/Botox/Physical Therapy

If you've followed us, you know Brody and Kylee have had routine Botox injections for several years now in an attempt to help with their tone issues linked to Cerebral Palsy. I have a love/hate relationship with Botox and always have. We've had times, in the beginning where we didn't see much difference and on the flip side, we've seen it work.... almost too well which tends to cause more harm than good. While Kylee has been allowed a break over the past year thanks to her SPOTT surgery, Brody was scheduled for another round in October. Long story short, after discussing history, concerns and seeing how utterly terrified Brody was to go through it yet again, Dr. Acosta decided to let Brody have a break from Botox and suggested we try an alternative treatment for his CP, an oral medication called Baclofen.

After doing some research, talking with some of our other docs and our fabulous physical therapist, Bret and I opted against the new medication. For that and other reasons, we decided to get a second opinion from Dr. Delgado, a highly recommended neurologist at Texas Scottish Rite Hospital for Children. We had seen Dr. Delgado when they were toddlers, but it had been a while. Here Brody is before the doctor came in "I'm gonna go ahead and stretch so the doctor doesn't say I have to have surgery." Break my heart :(

I was blown away with the initial visit we had with Dr. Delgado regarding Brody in November. They spent hours evaluating him (sure that sounds like a huge hassle, but believe me, it's so reassuring to me) and everything was checked from his balance, his tone, his reflexes, flexibility, strength, response to vibration stimulation...etc. They took multiple videos of him as well, walking, running...etc. Dr. Delgado wanted to hold off for a few months and then bring Brody back to reevaluate and repeat everything we did in November to see how he changed and if he weakend at all with the extended amount of time between  botox injections.  Brody is scheduled to go back the first week of February where we will decide the next plan of action. If the neurologist feels like Botox may be beneficial, we will have the injections the following week. *I'll explain more on that if we decide to move forward with injections.*

Meanwhile, we are working hard at home with Mrs. Ashley, our physical therapist. I CAN'T say enough about this sweet lady and the love she has for my kids. My heart will shatter into bits and pieces if she ever leaves us, no doubt. We've had a lot of great therapists in our years but none that have ever connected with my kids like Ashley does.  There's something to be said when your child asks EVERY day after school if Mrs. Ashley is coming.... hate the therapy, love the therapist! Currently, Brody and Kylee have (in home) PT twice a week. Love this picture of her and Kylee after she drove out to watch Kylee cheer at one of her football games!

Kylee and Dr, Mayfield, her orthopedic surgeon.

Kylee has her follow up with Dr. Mayfield at Cooks in July, her little left foot is looking GREAT! Since her surgery, we can see a big difference in her strength, her speed and ability to run, jump...etc. Her surgery (linked at the top of this post) has been nothing but successful and we are SO glad we made the decision to go through with it, even though some believed she was too little and young for such a big surgery. For now, and hopefully forever, she is doing good without Botox and is cleared until July when she goes back for a follow up. Dr. Mayfield wants to keep a close eye on her as kids with CP often face new challenges as they grow and develop. Regardless of what happens, I know this girl is in the best of hands with Dr. Mayfield!

Neuropsychology

Both Kylee and Brody had another neuropsychological evaluation before first grade started. They had evaluations last year before kindergarten and it gave us great insight as to where they were and potential challenges that could come with school as well as some great tools we can take moving forward into the classroom setting to help them succeed. Something I've yet to mention "publicly" is that our little Brodster was officially diagnosed with ADHD last year. Our sweet guy isn't an overactive, hyper kid like many associate with ADD/ADHD kids, but he struggles... a lot... with focusing. He struggled quite a bit during the first semester of kinder and we ended up trying a medication last December. It took some tweaking and a change of medicines but ultimately we have seen some very positive changes in his ability to focus and complete tasks that are given to him at home and at school. Since starting the medicine, our only struggle is appetite. Unfortunately when he's had his meds, he loses his appetite altogether so we're keeping a close eye on his weight gain. Below, a picture of giggly Kylee and Brody before a long day of testing...

Several local news reporters interviewed us in November in honor of Prematurity Awareness Month. You can read two online articles here and here. I love being able to share our journey and to hopefully inspire families who find themselves walking a similar road all while raising awareness about prematurity!

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!