Christmas Letter 2010

Leslie and I are happy to be writing our fourth (I think!) Christmas Newsletter together. I’ve definitely worked myself into a corner with the newsletter, it’s likely to become an annual responsibility for me! Oh well, I love writing it and reflecting on our year.

Little Miss Olivia

As you’d expect, most of our newsletter will focus on our time with Olivia and all of her progress and milestones.

In our last newsletter, you read about Olivia’s battle immediately after birth, which continued for months and months. The great news is that’s she’s doing great! All of the true medical concerns have been resolved, something that we’re extremely thankful for. We thank God daily for our little girl. Here’s a picture from her first birthday party at school!

That being said, our lives (especially Leslie’s) have been EXTREMELY busy. The never ending barrage of appointments, therapies, school visits, etc. keeps us both working hard. I’d be lying if I said that I did a whole lot of it, it’s really all Leslie. Honestly, she spends another 40 hours a week taking care of the non-stop obligations. Olivia and I are truly fortunate to have such a loving and dedicated mommy / wife. On top of Leslie, we’re all very lucky to have Gramma Honey too, who seems to be able to charm Olivia into doing just about everything and anything – Stephanie, thank you so much for all of your help, we’d be grayer and more wrinkly from the stress without you!

My main duties are changing poopy diapers (which I love), taking out enormous, monstrous bags of diapers, washing Olivia’s mountains of dirty clothes, taking Olivia on shopping trips (mostly to the grocery store or Target) and kissing my little girl every second I can! I love being a daddy almost as much as Leslie loves being a mommy.

Olivia’s been doing great. Despite her chromosomal deletion, Olivia continues to show us there is no “can’t”. Like all parents, we struggle to fight the daily temptation to worry about her milestones and focus on being mommy and daddy. Every time we try to limit her, she just ignores us and goes on doing what she was doing.

The coolest/most gratifying moment we had with Olivia this year was the day of her cochlear implant activation. If you haven’t seen it, we put it on YouTube…check it out at the link below.

http://www.youtube.com/watch?v=EjM04gaqFrc

That moment was truly inspirational. We’d been dealing with the fact that Olivia may never really hear for over a year and to see her respond like that was AWESOME!

A month before Olivia’s activation she had her surgery, which wasn’t quite as fun. They had a very difficult time getting her breathing tube in, which caused some serious complications … mainly pneumonia. The day after surgery was agonizing for all of us, Olivia was in so much pain from the surgery and the breathing tube debacle – all we wanted to do was take that pain from her. After a night in the hospital we went home, only to go right back after Olivia spiked a 104+ degree fever. Once we got to the hospital we found out she had pneumonia. We had a month between the surgery and her activation, and we needed every day of it to get better. Now she’s blowing and going with her implant! We love talking with her and singing to her; it’s so much fun!

Among Olivia’s favorite hobbies are chewing on her bib or hand, sucking her thumb, eating her “mac macs” (macaroni and cheese), talking with her mom and dad, and singing songs from Barney Radio on Pandora.

The Rest – It’s true, it’s not that significant compared to Olivia’s Story, but still an important part of our year.

Battle Buddy 57 – As Rx’d By Texas Children’s Hospital

Like last year, we continue to spend a lot of time at Texas Children’s Hospital. It’s sad when we walk through the halls and see multiple nurses, doctors and staff we know well or can give any of the lost families (the place is huge) directions to just about anywhere.

This summer, I organized a fundraiser with my new, good friend Vic at Bayou City Crossfit to raise some cash for Texas Children’s. What a perfect combination, Crossfit, a vomit-inducing way of working out and raising money for a good cause. The event was a HUGE success, we had well over 200 people coming out in 100+ degree July weather to put themselves through a BRUTAL workout – 2 people teams doing 8 exercises, 57 of each (one per day Olivia spent in the NICU). It was SO great to watch, not so fun to part

icipate in. Fortunately, my super-fit best friend Mike came down to be my partner.

It was great to have him there to take part in the event with me. All in all, we raised over $6,000 for Olivia’s endowment at Texas Children’s, not too shabby. Next year we’re shooting for $10,000+… just look at the picture of this cute family, doesn’t it make you want to donate??? Thanks to everyone who donated! Notice Leslie in the shirt made for the event. Hopefully you’ll think about participating next year! Olivia wants to know if you’re up to the challenge.

Halloween

This Christmas newsletter wouldn’t be complete without a mention to the incredible Halloween outfit my mom made for Olivia. Leslie and I have an inside joke (I’ll spare you the details here) about Olivia being an owl, which is an almost constant source of laughter for us, so naturally Olivia was an owl. Mom, you outdid yourself with the outfit.

If you see this menacing owl flying around with her razor-sharp talons unsheathed, I’d recommend you find cover and send her offerings of field mice (part of the inside joke, don’t worry about it…it’s funny to us.)

Naturally, we shamelessly paraded Olivia around in her owl outfit anywhere we could. Needless to say, it was a HUGE hit.

Miss Olivia – World Traveler

Once we took Olivia off of her oxygen, she became quite the traveler. She made a visit to Phoenix to surprise her gramma, papa, great-gramma, and one aunt and one uncle! Imagine my parents’ shock when we showed up at a Home Depot 3,000 miles away from their house to surprise them. Here’s 4 generations of Stevenses, with Leslie as my proxy.

We also took a week-long trip to the Bay Area for Olivia to see a therapist, which was a lot of work but tons of fun too. The therapy is considered “alternate”, but Olivia seems to be responding very well to it – it teaches little ones with developmental delays to organize their thoughts, and thus, their movements better. We saw some immediate results, like Olivia wanted to hold her head up, prop herself up and trying to roll from back to tummy! So awesome.

Leslie and Olivia also joined me for part of a weeklong work trip I had in San Diego. We had a chance to go to the San Diego Zoo and survived a mild earthquake while we were there. San Diego is truly one of the hidden gems in the U.S.

Wrap Up

That’s it for this year, we love you all and hope you have a Merry Christmas!

Babbling, Baby Bjorns and Bujos

How about all that alliteration, huh?? It's amazing how I amuse myself these days!

Babbling

Olivia is getting very close to moving from "pre-babbling", which is making a bunch of random noises, to "babbling", which as I understand it entails making the same sounds over and over. Among her favorites are the "L" sound, which usually sounds something like "Ooooh-LA" and the Spanish "en-ye" sound, you know the "n" with a funny squiggle above it!?!?!?! It's been so much fun talking with Olivia, she's getting really good at taking turns talking. Leslie or I will talk and then she'll talk, then we'll talk, then she'll talk, etc., etc. Her cochlear implant has been a miracle, there is no doubt about how well it's working. When that thing is on,she's a different person. Olivia is even starting to start talking to us just when we come into her view, something that's so great. She seems to get shy around Aunt Lisa for some reason...we'll work on that Lisa!

I hope she grows up to be like her dad, talking all the time and asking a ton of questions. I hope I'm like my dad and I have the patience to answer all of the questions!

Baby Bjorn

Among Olivia's newest possessions is a Baby Bjorn. For those of you who don't know what that is, it's the sling-like contraptions you see parents wearing with their children dangling in front of them. Honestly, I was extremely skeptical of this thing. In fact, I flat out refused to buy one for 15 months or so...man, what a mistake. I was totally wrong, this thing is awesome. Olivia loves it, we love it and it frees up our hands!



Olivia loves this thing, we've taken her the Greek Festival in it, on walks, to the new Market Square Park in downtown Houston (many times)...all over the place.

Bujos

For those of you that don't know the story, one of our favorite nicknames for Olivia is "bujo", which comes from the Spanish word "buho", which means "owl." We had a couple of nice ladies cleaning our house for a while (since gone, budget cuts) and one day Olivia was wearing a onesie with an owl on it and they taught us the term "buho", which we turned into "bujo"...OK, it's one of those stories where you have to be there for it to be funny, but it is to us. The best part of the whole story is that Gramma Mary made Olivia a owl/bujo outfit for Halloween so be on the lookout for those photos soon.

Update on Olivia's Progress and the Anat Baniel Method

I feel like every time I start a new blog the first sentence goes something like "It's been a long time since I posted to Olivia's blog, sorry about that, I'll try better in the future to post more frequently." We this post is now different...It's been a long time since I posted to Olivia's blog, sorry about that, I'll try better in the future to post more frequently.

I've come to realize that while I want to provide everyone with a periodic update on Olivia, so many other things come first. Most of that time, that's something for Olivia so I apologize if we don't post as much as we could, but we're trying really hard to!!!!!!!!!!!!

Since our last post, Olivia has been getting more and more accustomed to her cochlear implant. Our daily struggle is keeping the magnet on her head, something we expect to get much better when she starts sitting on her own more regularly and for longer periods of time. Olivia have been doing great; to me, the implant has been the single greatest aid for her. For a short time, she wasn't making many noises when she has her magnet on but recently she's been talking like crazy. Leslie and I can't stop saying how much she "talks" with us. We've even noticed that she starts fussing when it falls off. If that's actually the case than her implant is working incredibly well for her! We continue to talk with her as much as we can and expose her to new and interesting sounds. Olivia really like music too, so far her favorites are "Toddler Radio" on Pandora, "Rammstein Radio" on Pandora (this is NOT a joke, for some reason she loves death metal - it makes her smile all the time) and "Zac Brown Band Radio" on Pandora.

Again, she really loves Death Metal...no idea why, but every time I take her to Bayou City CrossFit, which plays pretty loud and intense music, she loves it! In fact, I had her at Bayou City last Friday and the Saturday before that, she had a blast! She loves her Uncle Vic and Aunt Katie and all the other great folks there who like to catch on world events with her.

We've also started Olivia is another therapy which integrates teaching Olivia movements with nueral mapping. It's a really interesting method called the Anat Baniel Method (ABM) and is based on the work of Moshe Feldenkrais who was apparently a renowned movement expert. We took Olivia to San Rafeal, CA last month to spend a week at Anat Baniel's center and saw great results...it was the first therapy that Olivia didn't consistently hate. In fact, she was smiling quite a bit. We saw results too, I feel Olivia has become better organized and was sitting for long periods of time (so awesome). Since then, we've been seeing an ABM practioner in Houston. So far, so good...we'll see how it goes in the long run.

Olivia's Journey to Hearing

We are thrilled to announce that Olivia's cochlear implant ("CI" from here on out, to save me a few keystrokes) was activated today, and it was a great success! We weren't quite sure what to expect, as we've been warned time and time again that children don't always react right away, so we went in with very guarded expectations, but we were blown away by just how definitively (and happily) she did react! But before we get to all of that fun stuff, let me give you a little background on what it took for us to get to this point today, as it has truly been quite a journey... (TEASER: There is a great YouTube video of her hearing Chad's voice today right after her activation...it's down toward the end of the post and we think it is just awesome!)

So when we first found out about Olivia's profound hearing loss, way back when she was still in the NICU, we immediately got plugged in with the CI team at Texas Children's Hospital to see if she might be a candidate. We had multiple counseling sessions with the implant program coordinator and learned all about CIs...more than I ever could have imagined knowing about them. We knew we wanted one of these amazing devices for our little girl, as it was her only chance at having "normal" hearing and being able to learn to speak verbally, rather than use sign language. But there were still many hoops to jump through to get approved for the implant. Olivia underwent many, many tests and evaluations (MRIs, CAT scans, bloodwork, EKG, speech eval, neuropsychological eval, etc.), and the CI team then had to review all that input and decide whether they thought she truly was a good candidate for getting an implant. We waited on pins and needles to their decision a few months ago, but obviously they did decide that it was worth a shot to implant her. We were thrilled!

So we did tons of research and finally decided on which device we wanted to use for Olivia (there are 3 different CI manufacturers, all with pros and cons to their specific devices). Then the big day arrived...July 26, surgery day, just 6 days after she turned one year old. The surgery thankfully went off almost without a hitch, except for the fact that they had a very hard time intubating her (getting the breathing tube down her airway that they use when putting these kids under anesthesia) at the start of the procedure. So although the surgery site itself healed very quickly, her poor little throat was not quite so lucky. She spent one night in the hospital (standard procedure) and Chad and I got to stay with her. It was a pretty rough night, and we felt so helpless as she was in a lot of pain and was very uncomfortable, but there was very little we could do to help her feel better other than give her pain meds.

Olivia at the hospital after surgery (attempting a smile, I think...what a trooper)

Each day got progressively better from there, although we did have a bit of a setback 4 days after surgery when she spiked a fever over 105 degrees (VERY scary for us) and we had to take her to the ER. They tested her for all sorts of stuff but eventually decided she probably had viral pneumonia. She had terrible congestion and it hung around for a good 3 weeks or so, but last week she finally got over it. Good riddance!

Then the other big day arrived...today, activation day! Texas Children's waits about a month post-implantation to actually "turn on" the implants, so that the surgery site has plenty of time to heal first. Chad and I had been waiting for this day so anxiously, just dying to know how (if at all) Olivia would react, and how her hearing would change. Again, we tried to set our expectations low, but of course deep down we wanted to see a noticeable reaction out of her, something to reassure us that the implant was actually working for her and that she was able to hear clearly now. When the audiologist first turned it on and started adjusting the programming, Olivia did visibly react to sounds by opening her eyes wider, looking around, etc. But nothing too over the top or earth-shattering. But then a little bit later we put her on Chad's lap and he started talking to her, and I swear it was like a whole new world of sound had just opened up to her, and she was absolutely loving it! She was smiling, "talking" up a storm, and just generally being giddy...it was amazing! Luckily we got it on video and you can see it on YouTube here:

http://www.youtube.com/watch?v=EjM04gaqFrc

I will never, ever forget seeing her so happy like that. I still hate that she was deprived of sound for the first year of her life, but man is it awesome to be able to give her that gift (which most of us take for granted) now. I could not be happier with our decision to get her a CI, and hopefully this is only the beginning of a long road of many amazing experiences for Olivia as this brand new world of sound opens up for her.

In closing, here are a couple pics of Olivia with her stylish new ear gear!

This is the headpiece that attaches to Olivia's head with a magnet (there is another magnet implanted just under her skin); it transmits the sound captured by the speech processor to the internal device). Of course we jazzed it up for her with a decorative cover!

Here is Olivia with one of the mascots of Advanced Bionics (the company that makes her CI). If you look closely, you'll see that the monkey also has her own CI over her ear! On Olivia's shoulder is the speech processor that connects to the magnetic headpiece. Adults wear these over their ears, like a hearing aid, but for babies they often just clip it to their clothes since it's rather large to try to keep on such tiny ears.

So that's Olivia's journey to hearing so far, but I'm sure it will only get more interesting from here, and we'll make sure to share some more stories as she continues to progress in her hearing. As always, thanks so much to everyone for keeping us in your thoughts and prayers, and specifically for all your prayers throughout this whole process of getting Olivia's implant. It's been stressful at times and I know we've had lots of anxiety about all of it, but we are finally starting to reap some of the benefits and it is so rewarding to watch it all unfold. Thanks again, and we love you all!

Leslie & Chad

PTH - 57 Reps for Texas Childrens!

Wow! Vic and the folks at Bayou City Crossfit really outdid themselves! I'm very proud to announce that we had well over 200 people and raised over $6,000 for Texas Children's Hospital at Olivia's fundraiser "Perseverance Through Hardship = 57 Reps for Texas Children's Hospital." The event went great, it was hot, but you should be sweating during a Crossfit WOD anyways. A big thanks to all the folks who attended and especially to the Crossfit community and Bayou City, y'all are great!

We also had a distinguished guest, Uncle Mike, from Chicago who got to meet Olivia for the first time and was my buddle buddy for the WOD, thank God too, he pulled me through it.

For those of you who weren't there, the WOD (Workout of the day) was the following, with Battle Buddy (partner)...

- 57 box jumps
- 57 push press
- 57 lunges
- 57 sit ups
- 57 squats
- 57 push ups
- 57 KB swings
- 57 burpess

Just because I said I would, I did the WOD myself a few days later in around 22 minutes. It was hell, but compared to what Olivia has gone through, it was a breeze.

Here are some pics from the event.


The guest of honor cooling off in Aunt Lisa's car!


The calm before the storm


Mike and me before the WOD


Les with Val and April watching the festivities


No comment!

Olivia's 1st Birthday! (and less than 48 hours till she gets her cochlear implant!)

One Year Down!

It's hard to believe, but Miss Olivia turned one year old on Tuesday, July 20! Where has the year gone?? It was such a great day for me and Chad to just reflect on how far we've come with Olivia over the course of this crazy, but overall wonderful, year. There have been ups and downs for sure, but I think the downs have made the ups that much sweeter. The littlest things that we probably would have taken for granted had Olivia been born totally healthy, instead give us the biggest thrills--like seeing her getting better at responding to sights and sounds, watching her continue working so hard on improving her motor skills, and melting as she shows her beautiful smile to us more and more each day! Though I know we both get bogged down at times in the day-to-day grind of everything involved in taking care of Olivia--all the therapy, doctor's visits, developmental exercises, etc.--at the end of the day we still know just how blessed we are to have her in our lives. We have learned so much over the course of this year that I don't think we would have without Olivia--we've learned to be more patient, more accepting, more loving, more determined, more optimistic even in the face of incredible challenges, and probably most importantly, more dependent on God's hand in our lives. We have no doubt that He trusted her with us for a reason, and reflecting on the past year makes me even more convinced of that. She is truly a miracle, and so that is what we celebrated on Tuesday! So enough of my waxing poetic...now let me tell you about how we actually rang in the start of Olivia's second year of life!

Chad and I both took the day off work to spend the day with Olivia, so we could just enjoy her and enjoy the significance of the day. However Miss O had quite a wild night in her Pack N Play the night before, so of course she ended up sleeping through most of her birthday. We still tried our best though, and we took her to Dave & Buster's as she had really enjoyed it when we went last weekend with my family. Fortunately she did wake up at D&B, and she seemed to have fun looking at all the crazy lights, listening to all the loud sounds, and of course riding her favorite vibrating ride again!

Daddy and Olivia riding the shaking/vibrating ride she likes so much!

We also decided to measure Olivia for the first time on her awesome giraffe measuring stick that Chad made for her way back before she was even born. She measured about 25" tall...10" longer than she was at birth!

Later in the evening Olivia's Honey, Aunt Lisa and Ian came over to our house to continue the celebration (unfortunately Papi was in Chile). Olivia continued her sleep-fest throughout most of the evening, but did finally grace us with some awake time toward the very end of the night.

In her "Birthday Princess" hat from Aunt Lisa...very carefully placed on her head so as not to wake her up...

Earlier in the day, in her cute birthday gear from Gramma Mary

Olivia's Birthday Party at School

Although Olivia played hooky from school on her actual birthday to hang out with Mom and Dad, on Friday her wonderful teachers at the Arbor School threw her an awesome party at school, which Chad and I got to crash. As you can see from the pictures, she also slept through most of this celebration...apparently Olivia was not nearly as excited about her birthday as all the rest of us! But it was still a great party and lots of fun--there was music, banging of musical instruments by all the kiddos, cupcakes, singing, and great presents!

Holding a maraca while dead asleep...


She didn't look too thrilled about the taste of chocolate ice cream Daddy gave her...(the bib reads, "It's My Party")

Cochlear Implant Surgery on Mon. July 26

In less than two days Olivia will be having her surgery to get a cochlear implant in her right ear. We are doing it at Texas Children's (of course) and are actually really looking forward to it, unlike one might with most other surgeries. But this is a surgery that we so badly wanted her to be able to have, because it will give her the best possible chance at having "normal" hearing (or as close to normal as possible). Cochlear implants are truly amazing in what they are able to do for people with severe to profound hearing loss, and they make normal speech and language possible where otherwise sign language probably would have been the only option. Though of course we have some nerves about the surgery, mostly we are just looking forward to everything we hope and believe it will do for Olivia and her quality of life, her development, etc. She already shows definite interest in sounds like our voices, music, etc., so I can only imagine all the possibilities it'll open up to her once she can hear all those sounds infinitely better and more clearly. It'll be about another month before they actually activate the implant, so that she has time to fully heal from the surgery first, so late August is about when we'll get to really start seeing what this implant can do for her, and we cannot wait. Anyway, surgery is first thing Monday morning and should take about 2 hours, so please keep us in your thoughts and prayers that day for everything to go smoothly and for Olivia to heal quickly and with as little pain or discomfort as possible. Our surgeon is great, and most kids bounce back within just a couple days, so we have no reason to believe she won't do great too!

Thanks to everyone for all your continued love and support!

I've Learned to Fuss, 5 days until the Big Event!

Little Olivia isn't so little any more! It's amazing how much she's grown, her feet are down to my waist when I hold her now. She's grown so much physically, and mentally. With her chromosomal deletion, we live in constant fear about what might happen over the years but when I watch her take all of those little baby steps toward being a strong, healthy, talkative, educated girl it just blows my mind. Sure, she'll be much slower than other little ones and may not live the same life as every other baby, but who cares? Leslie and I have probably worried more in the last 11 months than we have in all of the days before Olivia was born, but in the grand scheme of things all that matters is that Olivia's happy right? What happens, happens and the woman she becomes is the woman she becomes, all we can do is give her every opportunity to reach that potential, right?

If people still read this blog I'd love to hear your thoughts on this and know that we're in your prayers...the day to day grind can really get us down. We love Olivia so much and that will never change, but a parent can't help but worry about all the things they can't control! She's our little miracle, we want the best for her!!!!!

Olivia celebrated her 11 month birthday with daddy on Father's Day, what a great day it was. I spent most of the day with Olivia right next to me watching TV, at Leslie's parents or doing something great! I even got a finger painting that Olivia made with the help of her teachers at the Arbor School, it's so awesome - something only a parent would be proud of!

FUNDRAISER

We're all looking forward to Olivia's fundraiser with Bayou City Crossfit this Saturday! If you're coming, please come early (parking will be bad), bring lots of liquids to drink and something to keep you shaded and cool (it's OUTSIDE!)

Olivia's Awesome Photo Shoot

From Olivia's 6 month photo shoot!!!!! They're a little old, but we just got them in the mail and wanted to show her off! I hope this works...sometimes blogger doesn't cooperate.

T-Minus 3 Weeks Until Olivia's Fundraiser

I can't believe it's only 3 weeks away...and I'm already this fired up about Olivia's fundraiser. I spent the afternoon taking flyers for the event to local sports stores, you can find them at Luke's Locker, Tri On the Run, Finish Strong Sports and Lululemon. It's unreal how receptive Houstonians (and others) are to this cause, the overwhelming support has been awesome.

Of course, I can't thank Vic and everyone else at Bayou City for their support. If you don't have a home box, you need one! The support that comes from the CrossFit Community is unparalleled.

Leslie, Olivia and I are looking forward to the event, I hope all you competitors like burpees! I'll be competing with a great friend from college who's coming in from Chicago just for the event.

Alright, off to practice some muscle ups...yeah right.

Cochlear Implants!!!!!!!!!!!!!!!!!!

The Stevens Family got some great news last night that we wanted to share with everyone. The Cochlear Implant Team at Texas Children's Hospital approved Olivia for cochlear implants!!!!!!!!!!!!!!!!!!!!!!!!!! This is a HUGE development for us since Olivia's hearing is very bad right now, with little chance of improving without these implants.

We realize that there's no guarantee that her implant will "work". Work meaning that she'll have better access to sound and hopefully some day be able to talk with us! It's not an easy path and it's a long, long road with no guarantees, but at least there's a chance. Without them, we'd be learning sign language.

So we're cautiously optimistic. Olivia's surgery is schedule for Monday, July 26. She'll be 1 year and 6 days old.

We're happy to get yet another dose of good news and to see Olivia exceeding another of our preconceived "limits", "boundaries", whatever you want to call it that people have put on Olivia. She crashes through every one of those walls people try to throw in front of her! She's the strongest one in our family, if I can be 10% of her, I'd be a strong man.

Bayou City Crossfit

Vic and the folks at Bayou City CrossFit continue to amaze me! Check out their latest post on www.bayoucitycrossfit.com. Our gratitude for what they're doing for Olivia and other kids in similar situations can't be expressed with words. We hope you'll consider participating!

From Bayou City's Website

Bayou City Crossfit will be hosting a fundraiser to benefit Texas Children’s Hospital in representation of Chad Stevens’ daughter Olivia. Olivia has an extremely rare chromosomal deletion and has been in and out of the hospital for the past 10 months. She has been a fighter going to therapy 7 days a week and getting better every day. Chad’s letter to the Bayou City Crossfit Community:

Bayou City CrossFit Community,

As some of you may know, my daughter Olivia was born almost 10 months ago. Olivia’s battle against adversity started before she was born. During my wife Leslie’s pregnancy, we found out Olivia was growing slower than most babies and were referred to a series of specialists associated with Texas Children’s Hospital. As a result of those visits, we learned that Olivia really looked like a normal baby, just smaller and with a few issues that we’d need to look into after she was born.

So the big day came! Olivia was born July 20 and weighed in at 3 pounds, 11 ounces. Right away, a team of neonatologists whisked Olivia away for evaluation. She had a blocked airway and wasn’t breathing. The blockage was cleared, Olivia met mom and she went straight to the Neonatal ICU at Texas Children’s.

After that, Olivia was watched 24×7 by the staff at Texas Children’s for 57 days.

Olivia’s first few days in the NICU were trying for the entire family, but mostly for her. Olivia had complete blood work done, an MRI of her head, an ultrasound of her head, an ultrasound of her heart, an echocardiogram of her heart, an ultrasound of her abdomen, x-rays of her lungs, and complete sequencing of her chromosomes.

I was completely overwhelmed by fear. These were literally the worst moments of my life, as the doctors told us that there was a chance that Olivia had a life threatening condition that she most likely wouldn’t survive. So I waited, and cried, and waited, and cried, and prayed, and prayed, and cried, and prayed, and prayed, and waited, and cried, and waited. Then, one by one, the tests came back, mostly positive! Olivia has an extremely rare chromosomal deletion, something that wouldn’t have been diagnosable a few years ago. That condition has resulted in minor issues, but nothing life threatening.

I’d be lying if I said that since Olivia came home that things have been “normal”. She has therapy 7 times a week and we’ve been back to Texas Children’s more times that I want to admit, but Olivia is getting better every day. She will undoubtedly wear glasses and hearing aids, and have to work a lot harder than the average child to learn, but she’s a fighter. Watching her fight through all of this hardship has been life changing; it’s so amazing what this little girl’s determination has taught us.

That’s were CrossFit makes its appearance in this story. After spending countless hours in the hospital and at work, I needed something to keep me from turning into a complete bowl of Jell-O and to work off a whole lot of stress. I showed up at the box knowing that I was going to get crushed by the workouts, but knew I needed to do it too. Then it happened, I became a CF addict and the community and Bayou City CrossFit pulled me in. Everyone that works out at a great box knows what I mean.

I look at Olivia’s fight and CrossFit and see so many similarities. I can’t tell you how many times I’ve been going through a WOD completely exhausted and wanting to quit, only to think about Olivia’s fight and realize how much of a baby I’m being. This concept led to the birth of an idea Vic and I had about a CrossFit Fundraiser to benefit Texas Children’s Hospital.

This event, “Perseverance Through Hardship – 57 reps for TCH” will be held Saturday, June 26 starting at 9:00A.M at the Harriet and Joe Foster YMCA (1234 W. 34th). The event will cost participants $57 per team. This will be a battle buddy WOD, two people per team. There will be three divisions: female, male, and coed. This event consists of a timed WOD (8 exercises, 57 reps each) with prizes going to the top 3 finishers in standard and scaled groups. After the WOD, we’ll have food and beverages to celebrate the event. For those not competing, a donation would be greatly appreciated to help cover the expenses of the event, with any surplus going to Texas Children’s. The event will be held at the YMCA off of 34th and Ella. To register, contact Chad at csteven1@gmail.com or Vic at vic@bayoucitycrossfit.com. More information will be given after regionals.

Phoenix 2010 - Olivia's first plane ride and first dip in the pool!

Last week Chad, Olivia and I took a trip to Phoenix to visit his family, as now that she's off oxygen we can actually fly with her finally. She got to meet her Great Gramma for the first time, as well as Chad's Aunt Ann and Gil, and Uncle Don. We also got to see Gramma and Papa, who were there visiting from Pennsylvania. It was so much fun, especially because they had no idea we were coming. Chad did some excellent sleuthing to determine where exactly they were when we arrived in town, and it turns out we surprised Gramma, Papa and Uncle Don in the window treatments aisle at Home Depot...go figure! Needless to say they were shocked and a bit confused, but they quickly moved on to being thrilled, and I think it was approximately 1.3 seconds before Gramma scooped Olivia up and held her for the rest of our time there!

Olivia with Great Gramma

Olivia with Great Aunt Ann

Olivia with Daddy, Gramma and Papa

As for Olivia, she did great! We were so impressed with how well she traveled. I had been pretty worried that her ears might hurt her on the plane (mine sure always do), but she didn't seem to be bothered at all with the pressure changes. That was a relief. And she slept a good portion of both the flight there and the flight back. No horrible traveling with baby stories here! Just one sort of funny story though...On the way back home I took her to the bathroom on the plane to change her diaper, and somehow for a brief second she ended up on the changing table with no diaper underneath her (my mistake). Of course during that brief second she decided to pee all over the place! Her shirt was soaked, as was her back, the changing pad, and even some of her hair! This was a dilemma, as I didn't bring her diaper bag into the bathroom with me--just the bare necessities. I opened up the door to try and flag down a flight attendant to go get Chad for me, but none were around. Fortunately a really nice woman with a little boy waiting to use the bathroom offered to help, so she went to get Chad, who then brought over a clean outfit. After lots of mopping up and changing into a clean onesie, Olivia was a new woman! The best part was that she was smiling throughout the whole ordeal...I think she was pretty pleased with herself! I couldn't help but laugh. :-)

I guess I'm going sort of out of order here since I've already talked about the plane ride home, but while we were in Phoenix, we had a wonderful time. Lots of relaxing and just enjoying family time. I got a couple great spa treatments courtesy of Chad (for Mother's Day), and we had some good outdoors/pool time as well. The hotel grounds were beautiful, so we did lots of walking around exploring with Olivia.

One of the coolest parts of the trip was that we got to take Olivia in the pool for the first time! The first day we tried it she didn't seem too thrilled, but it was overcast so the water was not very warm. The second day the weather was much nicer so we tried again, and this time she seemed much happier. We got her submerged up to about her chest, and she seemed pretty interested--she was even kicking her legs around some underwater! Overall it was a good first introduction to the water. We figured she'd like it based on how much she enjoys splashing around during her baths! On our last night there we just hung out for a long time in this great outdoor area where people can eat, drink and listen to live music. Olivia was in a great mood and was just laughing and smiling the whole time while we relaxed and played with her. It was a perfect way to end our trip!

Chad's "black & white & color" masterpiece of Olivia, lovingly created on his iPhone on the plane ride home!

That's it for our trip, but here are a few more random pics from the last couple months, since I hadn't posted anything in a while!

Olivia's first Easter--doesn't she look beautiful in her frilly dress?

Easter bunny ears, courtesy of Aunt Lisa!

"Eating" her glasses...a favorite pastime when she pulls them down!

Being fawned over by Aunt Lisa, Papi and Honey on Mother's Day weekend...she was hamming it up for them and they were eating it up!

Staring at her awesome new overhead gym that Daddy made for her out of PVC pipe and random toys! (she's also enjoying her favorite toy, her finger, at the same time)

A better picture Olivia's new finger toy!

Here's a better picture of Olivia playing with her finger!

Back on oxygen, Back off oxygen

Little Olivia isn't so little anymore, she's up to 16 pounds and continues to grow and grow. A few weeks back she had a bit of a setback when some sort of ear / sinus infection caught up with her. It seemed like she was coughing up nastiness for about 2 weeks. Because she had stuff in her lungs for most of that time, her oxygen saturations went back down and we had to be her back on supplemental oxygen. While it sucked pretty badly, we took a little comfort in the fact that we knew that it was only temporary this time.

Over the last few weeks, Olivia's congestion has completely disappeared and she's back to being her healthy and very happy self again. One completely amazing development (that all parents experience) has been her discovering her mouth. One day Leslie and I were sitting in bed with her and she just started putting her finger in her mouth! While not exactly a cure for cancer, we were ecstatic. I bet we just sat there for an hour and watched. Since then, her mouth has become her favorite toy! Here's the best picture I have so far, I'm sure we'll get a better one soon.

NO MORE OXYGEN!!!! THANK THE BABY JESUS!!!!

I hope the title of this post says it all! Olivia had another OCRG this Monday to test her ability to effectively use oxygen as she breathes and passed the test. To be honest, I had absolutely no faith in the process or that she'd pass. The test, its interpretation and conveyance of results is truly the medical equivalent of smoke and mirrors. No one can give you a straight answer.

The good news is that all of that is history! She passed and we couldn't be more ecstatic. It's amazing how those oxygen tanks and cannula have tied us down. We held ourselves back from so many little things because of the cumbersome process of taking oxygen tanks with us everywhere. Thank God, we don't have to worry about that anymore!

I've been astounded at how such little things have made me so happy, like being able to just pick Olivia up and take her downstairs. It's so easy now...step 1) pick Olivia up, step 2) go downstairs versus step 1) get Olivia's travel oxygen tank, step 2) turn it on, step 3) turn off the large oxygen tank, step 4) plug Olivia's cannula into the tank, step 5) go downstairs, then reverse that process to get her back on the large oxygen tank.

Even better, Olivia had an MRI yesterday that required her to be sedated and intubated, which required us to monitor her oxygen all day yesterday and last night. I was a bit worried, even though she passes her oxygen test, but she did AWESOME. It was nice to validate that even in the worst times, she can manage without supplemental oxygen!

With Hope!

Chad

Daddy's Got An Itchy Typing Finger

I'm sure most people have stopped checking the blog, a fact that I can understand since we hadn't added a post in 2 months. Imagine your surprise when you check back and see two posts in 3 days!

I realized that my last post didn't 1) have any pictures or 2) update y'all on all of the great stuff Olivia has been up to.

So let's get to item #1, the pictures. We have so many good ones that I am struggling to pick the ones I want to add!


Olivia in her "Don't Bother Me, I'm Crabby" shirt - a gift from daddy's trip to Baltimore


Olivia's first day of school at the Arbor School!


Olivia in our laundry basket, which serves as a really fun sled for her as well!

On to item #2.

Olivia has been doing some amazing stuff since we last updated you. She's really discovered her mouth. Since she passed her swallow study and we've been able to feed her and play more with her mouth it has been a flurry of activity. She's always making the most hilarious noises (I can't even begin to describe most of them), she's always sticking her tongue out, smacking her lips and even putting her finger(s) in her mouth once in a while. We really enjoy watching all of this and watching her get baby food all over her face, hair, clothes, bib, mom and the bed!

We also bought Olivia a "bounce bounce" chair that she stands in and gets to bob her legs. It's great to watch, I even created a song to sing to her while she's in the chair. It goes something like "bounce ba bounce, ba bounce, ba bounce. bounce ba bounce..." You get the idea, apparently it's very funny. I'm not so sure.

Olivia also has been doing much better with her physical therapy, she's getting much better at sitting and tummy time. In fact, on occasion, she doesn't even cry on her tummy. Rumor has it she smiled once or twice too! It's a great thing to see her not so distressed and trying to get up on all fours.

Last, but not least, Olivia gets to wear her snowboard and shoes less. Daddy took Olivia to the doctor yesterday who said her feet look good and OK'd us to keep her shoes off more, up to 8 hours a day now (up from 4 hours).

So it's all going in a positive direction! Let's hope it always stays that way.

Chad

Looking Back

It has been WAAAAAY to long since we last updated Olivia’s blog, no excuses, we just haven’t gotten to it. I’ve been reflecting on how far Olivia, Leslie and I have come in the past 9 months and wanted to share those experiences with you.

It seems like an eternity since we found out Leslie was pregnant, but it was only a year and a half ago. I can’t tell you how I felt when I found out that I was going to be a dad. I was so shocked, but so happy at the same time. Initially, I really wanted to have a boy, you know, to carry on the family name…but I love my little girl so much I now realize how ridiculous those types of wishes really are and how little they really matter.

It was so surreal when we found out that Olivia had stopped growing a month before her due date. Even then, we still were so happy that we’d have a little girl. Then the big day came and sure, she was small, but we didn’t care. We had a little girl! She was so perfect. I will never forget those firsts – the first time I saw her, the first time I held her, the first time I kissed her, I could name a hundred. Day two was nowhere near as much fun. Olivia had so many tests run on her that I thought she was part of a scientific experiment and we found out the doctors suspected she had trisomy 18 or 13 (I forget which one, but they both are life threatening.) Those next few days were honestly the worst days of my life. We had no idea what was impacting our little girl and if it was life threatening. Simply put, it sucked.

Thankfully, the genetic testing showed she didn’t have trisomy 13 or 18, but a different, extremely rare chromosomal deletion. That moment was truly a lesson in perspective; most parents would have been devastated by the news and we probably would have been given different circumstances, but to us it was like winning the lottery two days in a row, as our little girl was going to be OK!

Since then, life with Olivia has been so great. Sure the doctor’s appointments (often many per week) and therapy sessions (7 per week) today aren’t great, but this little girl is such a miracle. I’m sure every parent feels that way, I guess I am no exception. Every time someone tries to limit Olivia, it’s like she says “Screw you, I can do that” and does it. Sure, it might be a little slower than some kids, but who cares? I mean, she has a genetic deletion, she’s not expected to be “ahead”. Just writing that makes me mad, who determines these things? As long as she figures it out and is happy, that’s fine by me.

So here’s a quick update on Olivia’s medical stuff…

• Initially she was followed by 11 specialties at Texas Children’s – cardiology, neurology, pediatric surgery, developmental pediatrics, pulmonary, ENT, renal, genetics, gastroenterology, audiology and ophthalmology. For the most part, she still sees all of these doctors but with far less regularity. In some cases, the doctors don’t need to see her for a year.
• Olivia has physical, occupational, speech, auditory and vision therapy session 7 times total per week. It seems to really be helping.
• Olivia is still on supplemental oxygen, but we’re hopeful that she’ll be off soon.
• Olivia wears glass and hearing aids, most likely she’ll have both or something equivalent for her whole life.
• Olivia’s genetic deletion means she’ll develop at a slower rate that most little ones, but most doctors don’t know how far she’ll develop. It looks like she’s going good right now so we’ll just hope that keeps up and give her every chance we can.

We really appreciate everyone’s thoughts and prayers, they really help!

Chad

Olivia Passed Her Swallow Study!

This past week we took Olivia back to Texas Children's to do another swallow function study, during which a speech pathologist watches Olivia swallowing using x-ray technology, to see whether she is aspirating (allowing any of the milk/food to go down the wrong pipe) at all. She has done several swallow studies since she was born and has always aspirated, which is why she has had to eat through the G-tube in her tummy since she was about a month old. Well, this time around we were really hopeful that she would do better, as she is just getting bigger, stronger and more coordinated every day, plus she has really seemed to love all the tiny little tastes of various foods that we've given her. So we were thrilled to see that she was able to swallow both baby food and thin liquids without aspirating even once! Everyone in that room was cheering for her! So what this means is that now we can start giving her small amounts of food by mouth every day, starting off with rice cereal for babies. Chad and I are having so much fun with this, and Olivia seems to be as well! Though it will be a very gradual process, eventually she should start taking more and more food by mouth and less and less by the G-tube, until hopefully all of her daily nutrition comes from food she eats by mouth. Below are some pictures of her recent experiences with rice cereal...messy, but we don't care!



This was really huge for us, and hopefully we get some more great news next week about her oxygen...please pray that Olivia's test goes well enough next week that she is able to come off the oxygen once and for all!

Holy Moly...The Half Year Mark

It's hard to believe, but last week Olivia turned six months old -- just like everyone told us it would, it has absolutely flown by. We didn't do too much on her half-year "birthday" -- actually, she slept for a good portion of the day as she had decided to celebrate one night early and was awake in her crib almost the whole night before her birthday!

As far as what's been going on lately with Olivia...allow me to catch up a bit since it's been a while since I last posted anything...

Physical development
Olivia has been getting better and better at sitting -- now she can sit unsupported for several seconds at a time before she starts wobbling. Here she is sitting on my lap over Christmas!


As far as her growth, Olivia is finally "on the chart" for her weight! For the longest time she was below the 3rd percentile, but she is now holding steady in the 7th percentile for weight, which we are just thrilled about and her pediatrician says is great. If you take a look at her recently, you can certainly see that she's not missing any meals! She is truly her Mommy and Daddy's child...

Life on the street
Olivia has started running with some bad crowds recently -- below is a picture from when we caught her throwing her gang signs...where did we go wrong? Ha ha... ;-)


Game day
Chad and I welcomed Aunt Lisa and Ian over for the Capital One bowl game between Penn State (Chad's alma mater) and LSU (Lisa's alma mater). Here we are in our game day gear, and Chad is proud to report that Penn State did in fact win. Olivia has pretty much no option but to be a Nittany Lion fan -- that was predetermined at birth!


Commiserating with Bubba
Olivia does not love tummy time, but unfortunately we must do at least some of it every day as it's really important for eventually learning to crawl. But at least her brother Chip feels bad for her when Mommy makes her do tummy time, so here he is trying to comfort her during a recent session...doesn't he just look so sad?


Some new accessories...
Aunt Lisa gave Olivia some awesome headbands for Christmas, and we liked them so much that Chad proceeded to buy about every other color available off eBay! Also note the unicorn -- this was also a Christmas gift from Aunt Lisa, as we have decided that Olivia absolutely loves unicorns (I guess someday when she's old enough to talk she'll tell us if that is true or not!)



In other very important news (but not documented by photos), Olivia's doctor's appointments have been going really well lately. It finally seems like some of the specialist visits are starting to die off -- for example, cardiology doesn't need to see her back for a whole year and the holes in her heart are tiny at this point, and they will almost surely close up on their own with no need for intervention. This was awesome news!! We are very hopeful that she will come off her oxygen in just a couple weeks here, as she was SO close to being ready the last time they tested her. And she does another swallow study next week to see if she can start eating baby food--judging by how much she loves the little tastes of baby food we've been giving her recently, we are very hopeful about this as well! We will keep everyone posted!

Christmas and Olivia's Dedication

CHRISTMAS

Olivia's first Christmas was a good one, it was great to have all of our family together in Houston to celebrate. Leslie's mom, dad, sister and brother, along with my mom and dad spent Christmas Eve celebrating! The amount of food, especially cookies, was phenomenal...I definitely ate 10-12 dozen cookies over the past 2 weeks. My mom sure knows how to fatten me up, and I don't need any help with that.

It was so great having our entire family with us to celebrate Christmas together and our time together was made even more special by having our little girl with us. Of course, Olivia was the main attraction and was decked out in her Christmas best to celebrate Jesus's birthday.


Olivia on Christmas Eve with Grandma Honey and Papi


Olivia's new Nittany Lion shirt from Mommy


Olivia sleeping with her Night Before Christmas Bear (thanks Aunt Ann!)


Olivia with Grandma Mary


The best Christmas present ever!

Olivia's Dedication at Grace Bible Church

For me, Olivia's baby dedication was the best moment of my time with Olivia. In all honesty, I wasn't sure if the day would ever come given Olivia's prognosis at birth. The dedication was amazing, and, of course, I completely lost it when I tried to tell a small portion of Olivia's story to the congregation. I didn't really care, because Olivia is so amazing and such a fighter it was good to shed those tears. While Olivia continues to improve every single day and impress us with her strength and fortitude, her life has been challenging for both her and us. She's just so amazing that Leslie and I were SO happy to present her to God!

Like I said, I totally lost it, and I'd bet there weren't many dry eyes in the church! As always, little Olivia steals the show!