Wednesday, August 26, 2009
Friday, August 21, 2009
Playing Catch Up....
Something happened. I don't know how, but it did. I might have involved a burger or two or maybe even a few watermelons thrown in, but somewhere somehow summer came and went.
Maybe it's because I worked while Brian worked on the house, or maybe it's because Faith was just as sick as she was during respiratory season but summer seemed to have flown by. Now that school is back in full swing it's time to put away the swimming pool (wait? did we even get it out? Oh no, I think the bathing suit we bought Faith last Spring hangs in the closet, tags still attached
-bad mom moment inserted her-) and get back to the grindstone.
Dramatics aside, it hasn't been all work and sickness and we have the pictures to prove it.
I know you were just inundated with pictures and videos, but I can't help but show you these "keepers." Please excuse the randomness of them all- just consider it a "catch" up from where we left off.
********************************************
Some of you have may noticed that Faith's hair has some...er..."special needs." Each quadrant seems to have it's own personality. Coupled with her ongoing thyroid issues and 2 year old hair pulling, she is bald in some spots and Alfalfa in the other. Because her hair has taken so long to grow we've been hesitant to cut it. Over the past few weeks multiple people have commented on how getting one's hair cut actually spurs growth (OK we got the hint). So last Friday we knew it was time. So we headed out to an over-priced, kid friendly hair cutting place to do the deed in hopes that we could channel Faith's inner Shirley Temple.
"I don't think I like the looks of those shiny things..."
"No...no definitely don't like them!"
********************************************************************
I am privileged to be a part of group of local families who have kid's with trachs. We get together every month or so tocomplain er...talk about what it's like to raise a neck breather. But we also just get together and have fun. This weekend we traveled to Colorado Springs (which is about an hour and a half from us- the longest Faith's ever traveled)to visit the Zoo. We've taken Faith to the Denver zoo before which was pretty useless- she couldn't really see the animals anyway, and seemed more interested in the people who were gaping at her like she was an attraction.
Needless to say our expectations were pretty low when we set out for the Cheyenne Mountain Zoo- to our delight it turned out to be a wonderful experience. Faith really got to get up close and personal with the animals, which was such a hoot!
Faith showed no fear while she fed the giraffes. This was right up her alley as feeding the dogs at home is one of her favorite pastimes. She thought the whole thing was hysterical.
The giraffe's weren't the only zoo inhabitants to enjoy a snack...
"Hey, did you get to do Kangaroo care too?"
"Hey Milo-I can't put my finger on it, but there's something different about you..did you get a new hair cut too?" Many of you already know of Faith's buddy Milo- who was her neighbor across the hall at Children's. Milo spent over a year in the hospital, and went home just weeks before Faith. We were first introduced to him as a nurse from the PICU pointed to him and said, "he's a ticking time bomb, it's only a matter of time before he dies." Two years later Milo is a vivacious toddler who has beaten incredible odds (and just had his trach taken out a few weeks ago!) If you were to tell us two years ago that one day we'd be taking our kids to the zoo together, I'd think you were nuts!
And here we are- the Mile High Tracheosto-mommies (and a few daddies too). Less then half our group could make it this one, and I am so glad we did because it was a blast. L-R: Marissa and her family, Milo and and his mommy, and us. :)
"Ok Mom- get over it already! It was like soooo two years ago!"
Sorry Faith, but we will never get over the gratefulness we have to the nurses, RT's and doctors from the place you spent your first six months of life- St. Joesph's hospital. We got to share our gratitude at this year's NICU reunion. (And boy was it neat to see Faith walking those halls!)
***************************************************
Maybe it's because I worked while Brian worked on the house, or maybe it's because Faith was just as sick as she was during respiratory season but summer seemed to have flown by. Now that school is back in full swing it's time to put away the swimming pool (wait? did we even get it out? Oh no, I think the bathing suit we bought Faith last Spring hangs in the closet, tags still attached
-bad mom moment inserted her-) and get back to the grindstone.
Dramatics aside, it hasn't been all work and sickness and we have the pictures to prove it.
I know you were just inundated with pictures and videos, but I can't help but show you these "keepers." Please excuse the randomness of them all- just consider it a "catch" up from where we left off.
Four generations: This is a "once in a lifetime" (or perhaps in anyone's lifetime) photograph. Brian's mother and his grandmother came out for a visit a few weeks ago. Faith loved meeting her great-grandma from Buffalo (and playing with her other grandma!)
Some of you have may noticed that Faith's hair has some...er..."special needs." Each quadrant seems to have it's own personality. Coupled with her ongoing thyroid issues and 2 year old hair pulling, she is bald in some spots and Alfalfa in the other. Because her hair has taken so long to grow we've been hesitant to cut it. Over the past few weeks multiple people have commented on how getting one's hair cut actually spurs growth (OK we got the hint). So last Friday we knew it was time. So we headed out to an over-priced, kid friendly hair cutting place to do the deed in hopes that we could channel Faith's inner Shirley Temple.
"I don't think I like the looks of those shiny things..."
"No...no definitely don't like them!"
I am privileged to be a part of group of local families who have kid's with trachs. We get together every month or so to
Needless to say our expectations were pretty low when we set out for the Cheyenne Mountain Zoo- to our delight it turned out to be a wonderful experience. Faith really got to get up close and personal with the animals, which was such a hoot!
Faith showed no fear while she fed the giraffes. This was right up her alley as feeding the dogs at home is one of her favorite pastimes. She thought the whole thing was hysterical.
The giraffe's weren't the only zoo inhabitants to enjoy a snack...
"Hey, did you get to do Kangaroo care too?"
"Hey Milo-I can't put my finger on it, but there's something different about you..did you get a new hair cut too?" Many of you already know of Faith's buddy Milo- who was her neighbor across the hall at Children's. Milo spent over a year in the hospital, and went home just weeks before Faith. We were first introduced to him as a nurse from the PICU pointed to him and said, "he's a ticking time bomb, it's only a matter of time before he dies." Two years later Milo is a vivacious toddler who has beaten incredible odds (and just had his trach taken out a few weeks ago!) If you were to tell us two years ago that one day we'd be taking our kids to the zoo together, I'd think you were nuts!
And here we are- the Mile High Tracheosto-mommies (and a few daddies too). Less then half our group could make it this one, and I am so glad we did because it was a blast. L-R: Marissa and her family, Milo and and his mommy, and us. :)And last but not least, all of this was made possible by the men and women who saved our daughter's life two and half years ago....
"Ok Mom- get over it already! It was like soooo two years ago!" 
Sorry Faith, but we will never get over the gratefulness we have to the nurses, RT's and doctors from the place you spent your first six months of life- St. Joesph's hospital. We got to share our gratitude at this year's NICU reunion. (And boy was it neat to see Faith walking those halls!)
I want to thank everyone for sharing the joy of Faith's first steps with us. I have no doubt in my mind that Faith is where she is today because of the multitudes of people who have prayed for her and supported us on this journey. We often talk about how Faith's is full of love- so full it could only come from the number of people who have poured their hearts into her.
Well, it's time to go salvage any part of summer we can. Thanks for checking in, even amidst our long periods of negligence.
Well, it's time to go salvage any part of summer we can. Thanks for checking in, even amidst our long periods of negligence.
Jen & CO.
Wednesday, July 8, 2009
The past thirty minutes have looked like this: word, word, sentence. Backspace, backspace, backspace. Word, word, backspace backspace.
I have came to the conclusion that sometimes there are no words, only tears.
Our very first nephew was born this week, hours later he was called home and healed in heaven. I am not sure if Brian's brother and wife would be comfortable with us sharing this news with you, but I know there are people who read this blog who have a special place in their hearts for little angles who get their wings all too soon, and I know how prayer (and connection) can heal the deepest of hurts.
Please pray for Brian's family, who have endured more hardships in the past few years than anyone should ever have to face.
J
I have came to the conclusion that sometimes there are no words, only tears.
Our very first nephew was born this week, hours later he was called home and healed in heaven. I am not sure if Brian's brother and wife would be comfortable with us sharing this news with you, but I know there are people who read this blog who have a special place in their hearts for little angles who get their wings all too soon, and I know how prayer (and connection) can heal the deepest of hurts.
Please pray for Brian's family, who have endured more hardships in the past few years than anyone should ever have to face.
J
Thursday, July 2, 2009
Complicated.
I wrote this post a few days before Faith's last hospitalization and forgot to post it. I wasn't going to publish it because it's a moot point now, (also re-reading it just now, it appears I was writing about everything but a point) but I figure it will buy me a few days until I need to post again...so here ya go...
This past weekend I said goodbye to a colleague of mine who is moving out of the country. Throughout the past four years working with my friend her mantra was, "keep it simple."
When I stressed about Kindergarten graduation ceremonies or not-so-pleasant interactions with administration she would scold me, "Jennifer! Keep it simple!"
My tendency to over-complicate things is genetic. My mom loves telling a story of a time where she overlooked the simple.
As a single parent with three children, she had reason to perceive things as complicated because they were. In one such an instance she drove around for a year + with a garbage bag covering the broken sunroof in her car.
"We don't have the money to fix it" she'd say empathetically as she carted us off to gymnastics, soccer practice, etc., as we tried not to be bothered by the sleet/snow that impaled us as she frantically drove about the city of Boulder.
I am not sure what lead to this revelation, but one day she picked up the phone and called the manufacturer of the sunroof. Turns out it was under warranty and a new sun-roof was at our door in no time.
Still, we continued to drive around braving the elements "I can't put that thing in!!!" She complained as months of manic driving went by before she ever attempted to put it in. Turns out when she finally did make an attempt to put the new sunroof in, it popped in with ease. "The story of my life" my mom remarked "making everything more difficult than it needs to be."
Thus was the case with Faith's sleeping arrangement. For the past year we've taken turns sleeping next to Faith's "bed" which consists of two mattresses on the floor. Since she was "crib-a-phobic" it was the only other alternative we saw. When people suggested we get her a toddler bed I envisioned our child dangling from the sides of the bed after an unfortunate ventilator bungee jumping attempt.
A few weeks ago (and many back aches later) we decided that perhaps it was time to seek a new alternative. A few clicks on craigslist and Faith was sleeping in a white wooden Pottery Barn bed (which retails for $250) for $60. Not bad. Even better, we were able to put the mattress we sleep on on a box spring- the result? Pure heaven. I had no idea how uncomfortable the mattress on the floor was compared to it being supported by a box spring. While the great Craigslist steal might not have been there, the option to raise the beds up a few feet and prevent many nights of discomfort were. Once again, over complication as it's best.
In a more significant turn of events, our life with Faith just got a little more complicated in a very uncomplicated way. You might recall a few months ago Faith had a bronch and it was determined that Faith's airway is extremely damaged and the only way she will ever be able to live trach-free is with reconstructive surgery.
At the time the only obstacle in our way was the ventilator. "Get her off the vent, and we'll talk about our next step." our Ear Nose and Throat doctor from Children's told us.
Telling this to parents who have lived a child with a hole in their neck and you can bet your bottom dollar that vent is flying out the window before you can say decannulation (yeah, the binky thing didn't last too long) But all the while we were terribly afraid that Faith would get really sick again and need ventilation. Ventilation without a trach = bad news for a reconstructed airway.
So we were prepared to duke it out with the ENT last week. We were going to put our foot down. No way Jose, Faith needs her trach...at least for one more year. Before we could open our mouths to argue, the doc said it for us,"nobody in their right mind would ever do this surgery on a child as fragile as Faith."
And then we heard what we have from day one, "she needs more time." No, not time to grow (the damage is done, growth cannot help her airway) but time without being sick. Three visits to the PICU this past winter put her out of the running. "Let's see how her winter goes this year, and we'll reevaluate next Summer."
Shocked, and relieved that we didn't have to argue our point (once again complicating things that weren't even complicated) our eyes pleaded for a little elaboration (something ENT's are not big on) and he added, "and if she has another bad winter, it'll be a couple more years until we talk about decannulation." He even went as far to recommend us to another ENT who's expertise is in patients with more "complicated (his words, not mine) airways."
Driving away I couldn't help but think of how the trach does complicate things, ironically things that should not be complicated. For a few minutes last March, when I heard the word "decannulation" I couldn't help but think of how uncomplicated life would be without a trach; to be able to bathe my child without worrying about dumping water into her lungs- or even better- to take her to the swimming pool, or to get up and go without worrying about emergency trach supplies and suction machines, letting her "tough it out" when she has a cold and avoiding hours upon hours of suctioning, having the option of choosing childcare, and to be able to hear her voice- all things we will never be able to experience until that little white tube comes out of her neck.
I am self-assured enough to know that having a child with a trach is not my identity but it has become a complication of an already overcomplicated life. I may not always be able to "keep it simple" and I, like my mother, may not be able to always be able to see the solution right in front of me, but with two years of experience under our belts and another few to go, you can be sure that with each day that goes by we're getting a little further off the floor. :)
Jen & CO.
This past weekend I said goodbye to a colleague of mine who is moving out of the country. Throughout the past four years working with my friend her mantra was, "keep it simple."
When I stressed about Kindergarten graduation ceremonies or not-so-pleasant interactions with administration she would scold me, "Jennifer! Keep it simple!"
My tendency to over-complicate things is genetic. My mom loves telling a story of a time where she overlooked the simple.
As a single parent with three children, she had reason to perceive things as complicated because they were. In one such an instance she drove around for a year + with a garbage bag covering the broken sunroof in her car.
"We don't have the money to fix it" she'd say empathetically as she carted us off to gymnastics, soccer practice, etc., as we tried not to be bothered by the sleet/snow that impaled us as she frantically drove about the city of Boulder.
I am not sure what lead to this revelation, but one day she picked up the phone and called the manufacturer of the sunroof. Turns out it was under warranty and a new sun-roof was at our door in no time.
Still, we continued to drive around braving the elements "I can't put that thing in!!!" She complained as months of manic driving went by before she ever attempted to put it in. Turns out when she finally did make an attempt to put the new sunroof in, it popped in with ease. "The story of my life" my mom remarked "making everything more difficult than it needs to be."
Thus was the case with Faith's sleeping arrangement. For the past year we've taken turns sleeping next to Faith's "bed" which consists of two mattresses on the floor. Since she was "crib-a-phobic" it was the only other alternative we saw. When people suggested we get her a toddler bed I envisioned our child dangling from the sides of the bed after an unfortunate ventilator bungee jumping attempt.
A few weeks ago (and many back aches later) we decided that perhaps it was time to seek a new alternative. A few clicks on craigslist and Faith was sleeping in a white wooden Pottery Barn bed (which retails for $250) for $60. Not bad. Even better, we were able to put the mattress we sleep on on a box spring- the result? Pure heaven. I had no idea how uncomfortable the mattress on the floor was compared to it being supported by a box spring. While the great Craigslist steal might not have been there, the option to raise the beds up a few feet and prevent many nights of discomfort were. Once again, over complication as it's best.
In a more significant turn of events, our life with Faith just got a little more complicated in a very uncomplicated way. You might recall a few months ago Faith had a bronch and it was determined that Faith's airway is extremely damaged and the only way she will ever be able to live trach-free is with reconstructive surgery.
At the time the only obstacle in our way was the ventilator. "Get her off the vent, and we'll talk about our next step." our Ear Nose and Throat doctor from Children's told us.
Telling this to parents who have lived a child with a hole in their neck and you can bet your bottom dollar that vent is flying out the window before you can say decannulation (yeah, the binky thing didn't last too long) But all the while we were terribly afraid that Faith would get really sick again and need ventilation. Ventilation without a trach = bad news for a reconstructed airway.
So we were prepared to duke it out with the ENT last week. We were going to put our foot down. No way Jose, Faith needs her trach...at least for one more year. Before we could open our mouths to argue, the doc said it for us,"nobody in their right mind would ever do this surgery on a child as fragile as Faith."
And then we heard what we have from day one, "she needs more time." No, not time to grow (the damage is done, growth cannot help her airway) but time without being sick. Three visits to the PICU this past winter put her out of the running. "Let's see how her winter goes this year, and we'll reevaluate next Summer."
Shocked, and relieved that we didn't have to argue our point (once again complicating things that weren't even complicated) our eyes pleaded for a little elaboration (something ENT's are not big on) and he added, "and if she has another bad winter, it'll be a couple more years until we talk about decannulation." He even went as far to recommend us to another ENT who's expertise is in patients with more "complicated (his words, not mine) airways."
This didn't affect us the way it should have. We knew it was coming, and we know it's what Faith needs. In the grand scheme of things a few more years with a trach is a drop in the bucket. We were thrilled we didn't have to fight- heck, we didn't even have to open our mouths.
Driving away I couldn't help but think of how the trach does complicate things, ironically things that should not be complicated. For a few minutes last March, when I heard the word "decannulation" I couldn't help but think of how uncomplicated life would be without a trach; to be able to bathe my child without worrying about dumping water into her lungs- or even better- to take her to the swimming pool, or to get up and go without worrying about emergency trach supplies and suction machines, letting her "tough it out" when she has a cold and avoiding hours upon hours of suctioning, having the option of choosing childcare, and to be able to hear her voice- all things we will never be able to experience until that little white tube comes out of her neck.
I am self-assured enough to know that having a child with a trach is not my identity but it has become a complication of an already overcomplicated life. I may not always be able to "keep it simple" and I, like my mother, may not be able to always be able to see the solution right in front of me, but with two years of experience under our belts and another few to go, you can be sure that with each day that goes by we're getting a little further off the floor. :)
Jen & CO.
Wednesday, June 24, 2009
"The Joy of the Lord is your Strength" Nehemiah 8-9
If there's one thing I know for sure about our daughter, it's that she's undeniably, irrevocably, positively......
Full
of
Joy
People have always commented on what a happy kid Faith is. We usually follow this up with a snide remark like, "yeah well you should see how happy she is at 2am." But truth be told, she is truly one bright and cheery girl. It doesn't take much to get her to flash her trademark wide-mouthed grin. This smile can rouse the most sleep-deprived of zombies and remind us how worthwhile this all is.
May your world be filled JOY this week and always,
Jen & CO
People have always commented on what a happy kid Faith is. We usually follow this up with a snide remark like, "yeah well you should see how happy she is at 2am." But truth be told, she is truly one bright and cheery girl. It doesn't take much to get her to flash her trademark wide-mouthed grin. This smile can rouse the most sleep-deprived of zombies and remind us how worthwhile this all is.
May your world be filled JOY this week and always,
Jen & CO
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