Thursday, January 21, 2016

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!

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!


  1. I just spent part of my lunch hour catching up with your family and precious children. So glad that you are back and appreciate you taking the time to give us an update. Always in my prayers!

  2. Really wonderful to read about how everyone is doing!

  3. Hello Heather!
    I have been following your blog for about 6 months and you have 5 beautiful and brave children! The poor dears, so much medical sfuff, it must be hard to keep up with it all! I have twin girls and one of them has cerebral palsy and the other is deaf.
    Did you mention you had a new puppy Copper? It's just that I have not seen anything else of him and wondered if I read it wrong. How old is Brooke now?
    Have a lovely day


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