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!

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!


Tuesday, January 19, 2016

All about Blade!

Our sweet Blade turned THREE at the end of October! This boy (for the most part) is at such a fun age. His vocabulary is huge and his perception of the world at this age is adorable...yet trying at times.  He's "big nuff" to do it all and has no idea he's the youngest of the bunch. To think that the quads were this age when he was born is insane. I felt like we had a decent age gap between the four and Blade but now, sometimes I look at Blade and can't imagine having FOUR his age and about to welcome a fifth...he's just a baby himself!
The summer and fall brought some big things for our little guy. You probably remember the quads' beaming with pride when they encouraged and successfully coached Blade in climbing out of his crib a while back. We ended up dropping his mattress to the floor after that and finally transitioned him to an actual toddler bed when his siblings got their new beds over the summer.

Another huge success was....POTTY TRAINING! I did the three day method with Blade, just like we did with the quads and he was a total rock star. Having just one toddler to train, we altered our approach a bit this time. We didn't quite put our entire lives on hold like we did last time (who can with four other kids?) and we didn't feel the need to tarp the entire house like before! A potty, a sticker chart and some skittles was all he needed and before we knew it, we were diaper free and never looked back. Like his siblings, Blade didn't night train at the same time, but did on his own within a few months.
The girls were sick at the time, but here are all three boys enjoying some bowling at a friend's birthday party...
Blade's three year stats:
Weight: 33lbs (70th percentile)
Height: 40 inches (95th percentile)
He passed his hearing and vision with flying colors and is one healthy little dude, which we won't take for granted ;)
Another first for our lil dude was the movie theatre! We saw Inside Out... it was the best nap he ever did have ;)

To celebrate his big number 3, we rented several bounce house/obstacle course things and invited friends over to play. He still LOVES "Mouse" (not Mickey Mouse, it's just "Mouse") and so that's the theme we went with. He loved seeing all the balloons, piƱata and party loot just for him!





Some of Blade's favorite things:
-His little pink blankets (yes) also known as his "mimis". He is attached and can't be without one at all times.
-He eats just about anything...with the exception of tomatoes.
-Like his siblings, he loves rain boots, being outside, anything that goes and playing in the creek.
-Like mentioned above, Mouse. The dude would watch Mickey Mouse 24/7 if I allowed him.
-He has a slight obsession with smelling things (like his blankets, for example) and he encourages others to use their sense of smell as well. He is constantly asking people to "nose it" when he wants them to smell something.

At three, I'm thankful he's still a faithful napper. Due to the quads being in school, he's up by 7am and takes a 2 hour nap or so after lunch and goes back down around 7pm. I'm SO thankful God gave me some good sleepers :)

Blade and Korbin

Love this sweet boy!

Now if time could just slow down a bit, that would be great!


Monday, January 18, 2016

First Grade... Then & Now

Like I mentioned on the previous post, I had every intention of getting back to blogging once the quads' started school. Here's the post I wrote the morning I dropped them off for their first day of first grade!


*********************************************************************
"Seriously. Where does the time go? I JUST dropped them off for Kindergarten yesterday!
I’m happy to report there were NO tears out of the quads or myself during the drop off this morning. Mr. Blade had a harder time. “I big nuff” he told me over and over, he insisted he would stay and color like the rest of them. Luckily the dude can be easily lured by food and I got him to walk out of the school at his own will with a promise of a trip to the donut shop on the way home. 
Many have asked if they’re all in the same class again this year and what our reasoning is behind the decision we’ve made. Yes, they are. For all you non-Texans, it’s a law here that it’s the parent’s decision to split their multiples or not. Like mentioned before, they were all together in PreK (there at the same school). They did well so the teachers all agreed they would do fine in kinder together. Towards the end of their kinder year I discussed the option of splitting them with several of the teachers and other staff and was assured once again that they did fine together (they didn’t cling or depend on each other…etc.) and nobody saw any reason to split them up if I didn’t want to. Although it’s legally my decision, I’m so thankful for a supportive school that doesn’t “ strongly urge” me one way or another. After much consideration, Bret and I decided to put all four in the same class again. The way I see it, they will have the rest of their lives to be apart. As they get older, they’ll naturally go in their different directions, but I’m not looking to rush it! Keeping them together makes things MUCH easier on me when it comes to school schedules, volunteering in the classroom and communication with the teacher.
Here’s Mr. Brody, a little nervous, but ready for his big day!
 

Miss B. This girl was born to learn and having a coloring page there waiting at her desk made her all the more ready for the new adventure!
 

Kylee Mae. Slightly annoyed at my picture taking and need to squeeze and kiss all their cheeks before leaving. This girl is growing up too quickly. 6 going on 16, I’m afraid :/

Korbin, my handsome dude, was luckily enough to be seated next to two of his friends from his kinder class!
Korbin, Kylee, Mrs. Lane (their new teacher) Baxlyn and  Brody at this year’s Meet The Teacher!
 
Good Luck, my sweet first graders!
Don’t worry about anything; instead, pray about everything; tell God your needs and don’t forget to thank him for his answers. If you do this you will experience God’s peace, which is far more wonderful than the human mind can understand. His peace will keep your thoughts and your hearts quiet and at rest as you trust in Christ Jesus.” Philippians 4:6-7


***************************************************
Fast forward about 5 months and they're all LOVING school, as am I! We were so blessed with an awesome teacher last year, I was afraid nobody could measure up. I was wrong. Mrs. Lane is not only a fantastic teacher, but she truly cares about these kids in every way. Nothing puts a mama's mind at ease like knowing her kids are cared for when they're away from her!
I watch a couple of other sweet boys a couple days a week but Friday's are just Blade and I. When we have nothing else going on, we like to go up and volunteer at the school. I go from classroom to classroom helping teachers with sorting, making copies and filing papers while Blade tags along or hangs out with his favorite librarian, Mrs. B.
Here's Brody who was named Top Cardinal last week! My sweet boy was recognized for his leadership and for setting a good example!
 
So hard to believe this school year is already more than half way over. I'm trying so hard not to blink. Before you know it, Blade will be off for kinder! 

Happy Monday!

Sunday, January 17, 2016

Hello....Hello... Anyone Out There?!

Hello out there! It's been a (long) while, I know. First I have to say is WOW, you guys sure do keep me in check on the whole blog thing. Over the past few months, I have received your comments, emails and voiced concerns to Bret and other friends at work. We are all fine and doing well, busy as most people are these days. You'd think life would free up when four of your five kids go off to school, but in reality, I think you get busier. Crazy to think I haven't blogged since MOTHER'S DAY. I had every intention of getting back to blogging when Brody, Baxlyn, Kylee and Korbin went to first grade (what?!). I came home after dropping them off on day one, wrote a post, went to publish and Blogger threw me for a loop with some techy stuff. Ugh. That post, along with an added school update, will be up next!
I'll play rewind for the next week or so to share (and document!) some of the things that went down over summer and fall in our house! 
Dr. Reyes, our beloved pediatrician, spoiled us once again and sent Bret and I to the Kenny Chesney/Jason Aldean/Brantley Gilbert concert. Talk about a fun, kid-free date night!
Brody, Baxlyn, Kylee and Korbin had their first field trip AND first trip on a school bus to the Dallas Zoo to finish up their kindergarten year. I was able to attend as a chaperone and enjoy the day with them!
L-R Brody, Baxlyn, Korbin and Kylee at their Kindergarten end of year celebration!
Our small town offers sport camps during the summer. We let each of them pick one camp. Brody chose basketball. He had fun, bless his heart, but it was a challenge to say the least. Kylee chose softball, another challenge but an accepted one! Korbin & Baxlyn were brave enough to endure the Texas heat during a week of outdoor soccer. I'm not too sure any of our little quadlings will be an all-star athlete, and that's ok :) Here's a pic of Kylee, who was awarded "Best Attitude and Hardest Worker" for the week! (Yup, they spelled her name wrong, she didn't notice.)
Fourth of July fun!
One BIG deal this summer was (finally) transitioning out of their toddler beds. Yep, our kids were in their cribs/toddler beds until just before first grade. We bought the convertible beds that would go from crib, to toddler to full sized beds but decided we didn't want to take up that much of their floor space in their rooms with two full beds in each. I wanted something that didn't take up all of their floor room, that would grow with them and offer them some personal space as well. After debating for a longg time as to what type of beds to invest in and getting input from other moms of multiples, we finally found what we were looking for at Nebraska Furniture Mart. Each quad now has their own twin bed that has a dresser and shelving built right in! Having the dresser drawers under the beds allow us to eliminate the need for a dresser (or two) and the shelves are perfect places for "THEIR" stuff.
 One of my favorite parts of the bed is the extra storage space beneath them! There are doors on either side of the bed that allows kids to crawl straight through. As you can see, ours are pushed against walls but the kids love going under there and having yet another space to put their own things. I added one of those battery operated push-to-activate night lights under each one which makes it that much more fun. They love to hide out under there, color...etc. I swear after the beds were delivered, I didn't see a kid for like 3 days ;)

We, of course, spent many days of our summer swimming. We put in a pool last summer and goodness do we love it. So many people told us a pool at home isn't worth the maintenance, SO not the case at our house!
 Although they're getting close, they're not quite swimming yet in the deep end with no puddle jumpers. This past summer was the first summer I've felt comfortable taking them all into the pool by myself. Baxlyn can jump into the deep end and swim across but it still scares the crap out of me. Slowly but surely, they'll all get there!
Kylee Mae and those sweeeet freckles!
 
Baxlyn, oh dear Baxlyn. I went into her room one day and my mouth about dropped when she turned to ask me a question. She could NOT understand why I didn't believe her when she said she didn't cut her hair. LOL!
Another exciting adventure this summer/fall was CHEERLEADING! Kylee mentioned last year that she wanted to be a cheerleader. Having been a cheerleader myself through Jr. High & High School I was TOTALLY onboard with the idea! Not only did I sign her up, I somehow got roped into coaching the squad of 32 girls ranging in age from 3 years old through 2nd grade, along with a few other amazing moms. Miss B ultimately decided she wanted nothing to do with being a cheerleader. If you know Baxlyn, you know she would rather stay low, color, organize and clean. Although very strong and independent, she wants nothing to do with performing or being in the spotlight. This whole being a quadruplet thing has brought her more than enough attention as far as she is concerned. Here's a picture of the adorable cheer buckets the other cheer moms and I made. While they're gear included embroidered bags, these buckets worked well for carrying their needed items AND we added a padded seat/lid which allowed the girls to sit without burning their little rears on the hot Texas ground.
The girls had one practice a week and cheered each Saturday for the tackle football team of little boys their age. It was SUCH a fun season cheering on our boys and watching our girls grow! I'm excited to say that Baxlyn had a change of heart once the cheer season began. Once she realized many of her friends were cheerleaders and that she was great at doing the cheers herself, she decided she wants to join next year!

For now I'll leave you with that! Over the next few days I'll catch you up on school, all the updated medical stuff and more details on our sweet number 5!

Saturday, January 16, 2016

Test test....

............... did you get excited? :)

Stay tuned!
Related Posts Plugin for WordPress, Blogger...