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!

Baxlyn’s EGD (Upper GI, Biopsy, Scope)

4am came early this morning and we headed to Cook Children’s Surgery Center. Just like her BFF, Mr. Korbin, she didn’t show any nerves before heading back for her procedure – such a champ :)

The procedure itself went well and only took about 15 minutes. Dr. Russo wanted to do the biopsies to confirm what he believes is Celiac Disease (see previous post). We were expecting to go in, have it done, the doc come out and say “OK, we will wait for results!” While we did hear that, we also learned of yet another concern Dr. Russo has. As he entered through her stomach to get to her intestines, he notice her tummy had food in it. She hadn’t eaten for a good 12-13 hours therefore there shouldn’t have been any food in there. He said what was there was rather large, nothing he could suction out. Really abnormal. He said she *could* have some motility issues going on in addition to what *might* be celiac.

We now have three things on our radar 1) Blood work which indicates Celiac Disease. 2) Chronic constipation. 3) Food in tummy.

He said right now all we can do is wait for results on the biopsies. Although he is going to push to have them tomorrow, it could be next week before we know anything. Dr. Russo did say that he could see that the lining of her small intestine had “carpet” (the villi that I talked about previously), the biopsies will show us if that carpet is “shag” or “berber”, we want shag carpet. He said if we do get 100% confirmation of the Celiac Disease, the gluten free diet should fix everything from her tummy pain to her constipation BUT it doesn’t explain why there is food hanging out in her tummy.

Bret and I left a bit more confused than when we were when we went in and are anxious to hear the results from today’s scope. We do feel confident tho that Miss B is in great hands! Please continue to pray we can alleviate her abdominal pain sooner than later! Thanks for the support and will keep you all posted!

Another Day, Another Diagnosis…

Many of you who I am friends with on Facebook know we’ve been asking for prayers for our Sweet Baxlyn. Here’s the scoop. Baxlyn has dealt with tummy discomfort for quite some time… for years, actually. She has mentioned her tummy hurting since about the time she could talk. In the beginning she would say her tummy hurt a couple times a week for a couple of weeks and then we wouldn’t hear anything from her for several weeks/months. She then would complain just a bit for a little while and then nothing for a while. Over and over. All the time she said her tummy hurt, she still acted normal. She always played, ate and was as active as she was when it seemed she was not in any discomfort. She, and the other quads, have always dealt with constipation, which is a very common long term problem for preemies. Miralax has been a regular in our house for years. We always chalked her “discomfort” up to being constipated and never looked deeper into the issue as it never affected her other than an occasional complaint.

Over the past 6 months or so, Baxlyn’s discomfort has gotten much much worse. Everyday she tells me “Mommy, my tummy hurts.” Lately, I’m hearing those words dozens of times a day. I took her a few months back to be examined by our wonderful pediatrician and we decided to be more aggressive with the Miralax, again assuming it was constipation. After a few weeks of no change, our doctor send us for abdominal X-rays which confirmed she was “FOTS” (full of toddler stool). Again, we were told to up the Miralax. With her discomfort only becoming more frequent and beginning to bring her to tears at times, I knew something just wasn’t right and that Miralax wasn’t the answer we needed.

Our pediatrician sent us to a gastroenterologist (GI). Dr. Russo met with Baxlyn and I last week and we talked and talked and went over her history. After a manual exam, Dr. Russo wanted to do blood work right away. Friday, Dr. Russo called me and said…

“I’m afraid Baxlyn has Celiac Disease.”

What? I was stunned. I asked him exactly what Celiac Disease was and he explained it’s the “gluten thing I hear so much about”. People with Celiac Disease have an autoimmune disorder that can occur in genetically predisposed people where the ingestion of gluten leads to damage in the small intestine. There are Villi that line the inside of the small intestine and in people with Celiac, the gluten in foods damage those Villi which keeps the person from being able to absorb the nutrients needed to grow and live a healthy life. It is estimated to affect 1 in 100 people worldwide. I was told many people choose a gluten free (GF) diet as it makes them feel better in general. However, it is essential for people with Celiac Disease to have a GF diet. Good news is that because so many people are choosing to go GF, stores are starting to carrying more products that are safe for people with Celiac.

Although based on her blood work alone, he feels 99% sure Celiac Disease is what we are dealing with, Dr. Russo will be performing an EGD (Esophagogastroduodenoscopy) this week to confirm the diagnosis. He will take several biopsies of her small intestine. He said the walls of the intestines are supposed to look like a shag carpet and with Celiac, they often look like tiles. He also said, due to being a quadruplet, he thinks there is a good chance the other quads will have it as well. After we confirm Celiac in Baxlyn, he will go on to test the others. I’d imagine that needing to go all GF for Baxlyn, we would automatically go GF for all of them (us). That being said, it is very important to know if the others have it as well for overall health reasons as it can affect many other areas.

I feel overwhelmed, to say the very least. The condition is treatable with a strict diet but it will mean a HUGE lifestyle change for our family. I personally couldn’t read a food label to save my life and have never been on any kind of diet. For now I’m depending on the good ole’ internet to learn more about the disease and what all comes along with it. I’m hoping to connect with other moms who have a child with Celiac to learn more. Our doctor will also be setting us up with a dietician to help direct us as well.

For now, please continue to pray for us. I feel like we juggle SO much these days and it seems as time goes on, more and more “medical things” are thrown our way. You are all aware of the surgeries three of the four underwent just before Christmas but there have been other things we’ve been faced with that we’ve chosen, for their own privacy, not to blog about for now. Now this…. which isn’t something that will “pass” like many other things. Since NICU, Miss B has had the “easiest ride” as far as long term doctors go. While check ups, procedures and trips to hospitals are a regular occurrence for Brody & Kylee, a lot of this is new for B. She’s a very brave little thing, that’s for sure, but I know she’s nervous about what is going on and I’m trying to explain things the best I can to her, especially for not understanding it all myself. She will be going in super early on Thursday morning for her scope. She will be put under anesthesia and the procedure itself will only take about 30 minutes. We’ve been told not to change anything in her diet just yet, not until we get results from her EGD. In the meantime, I’d love to hear any experience YOU may have with Celiac Disease, especially in children. I have so many questions, I don’t even know where to begin!

In the end we know and trust that God has it all in His hands and he has a perfect plan! We also know that He will be with us every step of the way, regardless of any challenges we face! I’ll keep you all posted!

(Photo credit: Amy Horton Photography.)