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
Friday, April 23, 2010
Wednesday, April 14, 2010
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
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
Monday, April 12, 2010
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
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
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