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.
Monday, October 4, 2010
Tuesday, August 24, 2010
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 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
Leslie & Chad
Sunday, July 25, 2010
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!
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!
Saturday, July 24, 2010
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!
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!
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!
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 MaryAlthough 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!
Monday, June 21, 2010
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!)
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!)
Monday, June 7, 2010
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.
Saturday, June 5, 2010
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.
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.
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