Confident Kylee & A New Doc.

We had our appointment with an orthopedic surgeon a few weeks ago regarding Kylee’s foot/leg. We LOVED Dr. Mayfield at Cook Children’s and found out he works closely with Dr. Acosta, the neurologist who will be administering Kylee & Brody’s next rounds of Botox in May. He said her tibial torsion wasn’t as bad as we were told initially so that is good news. He also said while Kylee’s brace is probably helping more than hindering, he doesn’t think it alone will have much of an effect on her foot positioning. Our plan for now is to follow up with Dr. Mayfield within 2 weeks of the Botox injections so he can see how the specific muscles reacted to the treatment. It is that appointment that he thinks will confirm what he already predicts will help Kylee the most, which is a surgery called the SPLATT Procedure. The surgery would be transferring half of the tendon from one side of the lower leg/foot around to the other side in hopes that the extra tension will help correct her foot position. Bret and I asked a lot of questions at the appointment and have done a bit of research since then but are not hanging on every word just yet until we see how this next round of Botox goes. Their Botox in the past has not shown us a HUGE improvement. After examining Kylee’s condition, Dr. Mayfield (who also knows our previous neurologist) told us that Dr. Acosta spent a significant amount of time targeting this specific area where Kylee needs the most help. In his words “If anyone can hit the right spot with a Botox treatment, it’s Dr. Acosta”. We feel very confident in his ability and the ability for the two doctors to work together as a team to figure out the best treatment for Kylee.

Over the course of their little 5 years of life, our crew has seen a countless numbers of doctors for many different reasons. Adding a new one doesn’t even phase them these days. Kylee was so comfortable with Dr. Mayfield! She did a lot of the talking during the appointment, told him all about her leg and how it affects her, her therapies…etc. At one point (when trying to reference her hand splint she used during restraint therapy a long time ago) she said “…there’s this thing, in my panty dwawer (drawer)…” Everyone in the room did all they could not to laugh out loud but Dr. Mayfield managed to hold it together, smile back at her and say “In your panty drawer, huh?!” It makes us so proud to see her so confident and be able to talk to people to openly about the things she struggles with!

For now, Kylee wears her brace only a fraction of the time. She complains that it hurts and by the looks of the way it fits, it’s no surprise that it would hurt. She tolerates it for an hour or so before wanting to take it off. We’ve taken her twice now to have it adjusted but the orthotics consultants feel they’ve done all they can to make it fit her leg/foot. It’s a bit frustrating as a parent, but we’re doing what we can do while trying to keep Kylee in good spirits. The last thing we want her to feel is “different” in a bad way, ashamed or overly worried about the way her Cerebral Palsy affects her.

We would appreciate if you threw up a prayer for us every so often that we continue to place our kids in the right doctor’s care and that over time we have the right guidance regarding their treatments. Thanks!

Happenings…

We’ve been busy, as always. Life just seems to get crazier as the kids get older! The quads are still enjoying pre-school. I feel like the school year JUST got started and here we are in the final couple of months. We had a nice break over spring break. Sometimes I worry them waking at 6:30am during the week will get them in a bad habit, I was presently  surprised when they slept in during spring break. Blade is a great sleeper-inner too but I have to wake him up to take the quads to school and wake him up again from his morning nap again to go get them. Lucky for me, the quads still nap faithfully every afternoon, something we’ll have to work on this summer, I suppose. Kindergarten will be a real wake up call, that’s for sure!

They’re still enjoying tee ball as well, I am SO happy we signed them up. Makes me so proud to watch them! Here’s a picture from their game this past weekend. Next to snack, of course, their favorite part of the game is getting in the huddle to yell “Go Pirates!” on the count of three.

Bret has been working for a couple of weeks on building our first garden. Although I’m not a huge veggie eater, I’m really excited to see how well we can do at this whole garden thing. After Saturday’s game, the quads helped us plant a variety of foods including strawberries, tomatoes, cherry tomatoes, lots of onions, cabbage…etc. Now it’s just keeping them OUT of it so they all have a chance to grow!

My three little men, getting down and dirty while helping Daddy get the garden framed…

Love love this one of Blade. He’s learned to smile on cue. You can hold up just about any object as if it’s a camera and he cheeses so big! He’s especially proud here because he’s posed by Brooke. It’s not too often he can catch up with her!

Busy bees… yes, still in their uniforms ;)

Love this shot of Kylee & Brooke, too. I walked out back to do a kid count and looked down to see these two spending some quality time together. Not sure how I was lucky enough to have time to run and get my phone!

I’m hoping our garden luck far exceeds our fish tank luck. We said good bye to our 4th fish this morning, I actually haven’t even broken the news to the quads yet. Baxlyn & Blade are the only two with their original fish they brought home on the quads’ birthday. I blogged about Brody’s fish passing. It wasn’t but maybe two weeks later that Kylee’s croaked nearly right in front of her eyes. We had company over and Kylee ran into the kitchen “I think my fish DIED!” Thinking she was mistaken, we all casually walked over to the tank… sure enough, her fish was laying there giving it’s last few wiggles. Luckily Kylee took it well. Uncle Chris (aka Uncle Rufus) led all the kiddos in a little good bye ceremony at the toilet before sending him off.

We’ve tested our water over the last few weeks and all seemed well. Last night I noticed little “Fishmo” was not looking so great, we tested and our nitrate was a bit high, we’re trying to figure it all out before we lose any more fish. I have to say we are doing something right when it comes to Baxlyn’s sucker fish as hers has nearly quadrupled in size since we got it – I assume that’s a good sign?! I tried to get a pic, but of course, he/she wouldn’t cooperate!

More to come!

**One a side note, please throw up a prayer for my dad. He is having some concerning health issues. Pray for peace and for guidance for our family and the doctors. Thanks!**

March for Babies – 2014 – WE NEED YOU!

We’re gearing up for our annual March for Babies walk that is to be held next month in Dallas!

If you’ve followed our blog over time, it’s no secret we are big supporters for the March of Dimes. The March of Dimes Foundation is a United States nonprofit organization that works to improve the health of mothers and babies. It was founded by then-President Franklin D. Roosevelt in 1938 to combat polio. It has since taken up promoting general health for pregnant women and babies in efforts to give all babies a healthier start.

The money we help raise for the March of Dimes supports programs that help moms have healthy, full term pregnancies. It funds research to find answers to the problems that threaten our babies. Since 1970, March for Babies has raised a staggering $2 billion to benefit all babies.

Here are just a few ways the March for Babies has already helped – click to enlarge:

Currently there are 2.5 million dollars in grants at UT Southwestern that are helping support scientists in studying the changes to a mother’s body when she goes into preterm labor, not changes that can be seen, but studying these changes on a molecular level to find ways to prevent pre-term birth. Only 50% of the causes of pre-term birth are known at this time. It is the March of Dimes’ mission to close the gap on the other 50%.

The March of Dimes is a big part of the reason Brody, Baxlyn, Kylee & Korbin are here today. All four of the quads received surfactant for their severely under developed lungs. Without the surfactant their lungs would not have been strong enough to withstand the support from the ventilators they were on. Every baby, whether born healthy or not, has been affected by the March of Dimes in some way.

What can YOU do to help?

1) Make a Donation.

None of the above can be done without financial support for the March of Dimes. Each year, we set up a Team Page where you can donate directly towards the March of Dimes. ALL donations are appreciated, big and small, and every dollar will help make a difference in the lives of babies. We like to encourage you to give what you can, even just $5 in honor of the healthy kiddos in your life today. Each year, we’ve blown our goal amount out of the water, so this year we’re going to take a leap, reach for the stars and go for $1,000! Thanks to some our our great Facebook friends, we’re already well on our way to reaching it!

2) Pass along our site to others.

We understand if you are unable to give financially. If that’s your case we ask that you pass along this blog post OR the link to our Team Page to your Facebook friends, family & coworkers so that they can donate if they’d like.

3) Walk with us!

Obviously this option is for our local supporters! We already have a team of about 35 people of all ages who are going to walk along side of our family at the Dallas March for Babies walk, we would love to include even more! Come by yourself or bring along your spouse, kids or friends too!

Everyone is able to help in one of the ways mentioned above. You can safely & securely donate, easily join our team and/or share our team page with others by clicking here.! For additional information, feel free to contact us directly at coxquads@yahoo dot com or leave a message below in the comments section.

Take a minute to look back at some of our past March for Babies walks:

March for Babies 2010

March for Babies 2011

March for Babies 2012

The Reason We Walk

Thank you so much for helping us help babies!

 

My Little Pirates – T-Ball!

Bret and I signed Brody, Baxlyn, Kylee & Korbin up for t-ball! Based on their personalities and interests so far, I don’t think they’re all made out to be long term athletes. That being said, I really wanted them to experience being on a team and playing a sport, just one time. Although their team is coed, Kylee & Baxlyn are the only girls among 8 little 4 and 5 year old boys! In fact of the hundreds of kids we saw this weekend, I only saw a total of 4 little girls! We had their first practice last week and their first official game on “Opening Day” this past Saturday. Let me start by saying if you haven’t ever been to a t-ball game – GO! It’s some GOOD entertainment, that’s for sure!

Our Little Pirates L-R Brody, Kylee, Korbin & Baxlyn

I am SO happy with the league and team they were placed with. I had this silly fear that we would be placed on a team with kids who knew what they were doing, whose parents wanted to “win” and were there to succeed and compete. I was happy to learn that their team doesn’t keep score, everybody gets equal chances and not one kid knew what they were doing – whew! They are numbers 2,3,5&6 – ironically #4 was given to another kiddo!

 

We were there bright and early so the quads could join in a little parade with all of the other teams. After the opening ceremony which included the national anthem, prayer & first pitch, they noticed the Mckinney Rough Riders mascot from afar and HAD to go see the “harry orange guy”. Although Kylee agreed to high five the big orange guy, she couldn’t quite get herself to turn her back on him for a picture…

 That afternoon they played their first game. Like I mentioned before they had had just one practice the week before which didn’t include the actual field with bases. Their whole little team was CLUELESS which made it that much more fun to watch. Coach Z would take a minute to tell each one what to do after hitting the ball, of course, none remembered and usually stood there with a big smile after their big hit!

Each kid gets to swing as many times as needed until they hit the ball and they always get on base no matter what! 5 kids bat and then they run them all in and switch to the out field. Below is Kylee up to bat. With prompting, she did good at using her left hand to help swing and had a good hit!

 After standing for a few seconds, she took off towards 1st base! Run, Kylee, ruuunnnn!

Wearing her glove on her left hand is pretty difficult for her so she just held on to it while out in the “out field”. Here she is (3rd from the right) proudly showing one of her team mates how she can balance it on her head while the other team bats!

 ….and here she is with another little boy playing in the sand! Not a care in the world :)

 Baxlyn was the one I thought may be the least excited about playing. She wasn’t too excited when I told them they were going to play on a team. I’m pretty sure that ultimately she was in it for the juice boxes I told her would be there after each game. She would MUCH rather be organizing things or coloring a picture than getting dirty. Not to mention she’s only a fan of the outdoors when it’s a perfect 72 degrees out. Saturday morning was a bit chilly so she thought she was going to freeze to death and then by afternoon we hit nearly 80 degrees in which she thought she was gonna melt. Once the game got started I was happy to see she really enjoyed playing! She was ready to leave about half way through the game but held out until the end! Here she is taking a swing at the ball…

She was a little bummed she didn’t hit it over the fence like she had been hoping she would for a few weeks. We assured her if she keeps practicing as she grows up, she can do it one day ;)

Miss B looking ready while covering first!

  Sweet Blade enjoyed watching his brothers and sisters play while he proudly yelled “Daa! Daa!” The boys really enjoyed playing too! Brody was great at hitting the ball! Once hitting, like the other kids, he wasn’t too sure what to do next. You could almost see his little mind racing as he heard half the parents saying “RUN RUN!” while the parents of the other team yelled “GET THE BALL! GET THE BALL!”. He would stop, run towards the ball, then run towards third base only to be redirected back over to first! He’s a little sluggish getting from base to base, usually stopping to take a breather about half way and continuing to walk to the next base. I’m pretty sure he was lapped by several players throughout the game but that’s ok :)

 Korbin did great and is probably the one most likely to go on to play sports. He enjoys playing and has always had quite an arm when it comes to throwing. Here he is ready to take a big swing…

 Love this shot of both teams as they go slap hands at the end of the game!

 

 Although they’re having a great time, I think I’m enjoying them playing even more ;) I love watching them thrive and enjoy things in life with no worries and I look forward to the rest of the season! GO PIRATES!

RIP Chicken Hawk…

Yup. Lost one already :(

I mentioned on the last post how I felt Brody’s fish, Chicken Hawk, was a bit “off”. Last night Bret and I noticed his tail/fin seemed to be misshaped. I looked back at previous pictures and sure enough… it looks as though another one of his fishmates had been gnawing on poor Chicken Hawk’s hind end. I felt so bad and asked Bret what we should do. Bret was slightly less concerned to say the least “He’s a FISH, Heather!” We headed off to bed and when I checked on our little friend this morning he was a goner. I feel like the worst fish-mom ever :(

Today was “Opening Day” of t-ball season so I headed out super early with the quads. We didn’t mention anything to Brody before we left and the plan was for Bret to do the “replace the fish so the kid will never know” thing before meeting up with us later during the day. Bret & Blade went to the store and picked out a new orange fish and returned it to our tank. 

When we got home I called Brody over to check on the fish to see if he’d notice. It was a few minutes before he finally noticed that this orange fish was about 5 times the size of the one he had. A bit confused he said “What?! How did you do that? Is my fish DEAD?” I don’t think the thought entered his mind that we replaced his fish, rather he just KNEW this one wasn’t his. I confirmed his suspicion and told him that yes, Chicken Hawk had died. Brody wasn’t too upset. He fought a few tears but none fell. Kylee, hearing the news from across the house, came running and, as expected, was a bit concerned. Although she didn’t cry she wanted to know exactly what happened. If I had to guess, I’d say Korbin’s hormonal pregnant fish was the one who had been snacking on him. I’ve seen her just a handful of times chase a few others around the tank, but nothing crazy. Rather than throw Korbin’s fish under the bus, we told the quads’ we didn’t know exactly what happened. They all seemed fine with that answer!

Soooo while we wish a farewell to Chicken Hawk, we say hello to Brody’s new fish which he named “Goldy”.

Here’s to hoping there are no more causalities among our underwater friends for a long time!