We made it through another Buddy Walk.
I didn't know what a Buddy Walk was, like most people who may read this, until Grady was born.
Each year for the past 4 years that we've participated, the Buddy Walk has been difficult. Each year it's difficult for different reasons. This year was hard because it was going to be my Dad's first time of joining us for the Walk. He was actually looking forward to finding out what it was all about. This fact alone made the Buddy Walk tough on all of us.
The other thing that is difficult is just the feeling you get from your "team" and everyone who chooses to show up at the capitol that morning. When I say difficult, I mean the lump-in-your-throat-because-you're-so-in-awe-and-so-blessed-and-grateful difficult.
I'm in awe of the individuals with Down syndrome. Totally inspired by their love of life and love for everyone around them. Awed by their talents and abilities, and by the amazing circle of friends and family who support them (and really all of us). And I'm moved beyond words by those who join Grady's team.
I have a coworker and friend who is a repeat walker who came, and brought her boyfriend, on HER birthday. We have other friends who have walked every lap with us over the past 4 years. I have my family and in-law family who donate, walk, and support us all year. I have extended family like aunts and cousins, and this year even my dad's mom and brother, who travel just to be a part of this event. I have other past and present coworkers, friends of mine and my husband's...and they bring friends and family to join in!, and just so many people who I love so very dearly. All of this is completely overwhelming.
I learned something this year. It never occured to me that when I say "We're walking to promote awareness for the abilities of people with Down syndrome" - that others may not really get that. They don't live it like I do. But this year a very special group of people brought this to my attention inadvertantly.
This special group of ladies are some of my mom's good friends from my hometown. You just have to love, love, love being from a small town. Sure, these five ladies are my mom's friends...but they're so much more than that...they are
- my 5th grade basketball coach
- the reason I learned to ski
- the "party" location (for both my wedding shower and a Scentsy party!)
- the reason why I knew I couldn't be a teacher or lifeguard (I helped her with her daycare!)
- my confirmation sponsor
And I babysat for three of the five! These ladies are obviously so much more than what I've stated above to me and my family...as are so many of the people of my hometown.
These ladies got up at the crack of dawn (or probably before) and drove here (3 hours) to be part of this event. They just wanted to support us. And so they did. And I am so eternally grateful to each of them, as I am to every single person who joins us each year.
They really wanted to know about Down syndrome, understand the event, and they asked my Mom questions about it. I LOVE that. If you have a question, ASK IT. The best way for Grady and those like him to gain understanding and acceptance is for all the unknowns and misconceptions to be eradicated.
I learned that I have to do a better job explaining The Buddy Walk...but I don't think I'll ever be able to do it justice. It really is an impressive thing, that in its own right is quite...magical. It's one of those things that can make you laugh and cry in the same instant.
And the people who choose to spend their time taking part...THANK YOU. Thank you for being there. Thank you for being a part of our world. Thank you for the knowledge and experience you gain each time and spread with you as you go throughout your life.
If Grady's designer genes had never entered our world, we may not have known any of this - along with our friends and family. I'm so glad we can share this with them, and feel so blessed that they open themselves up to learning, accepting, loving, and supporting - no matter what.
Sunday, September 26, 2010
Sunday, September 12, 2010
Pneumonia and More
I read through months worth of Facebook posts and blogs.
It started as a quest to find old conversations with Dad.
What I found was an interesting history of Grady.
Grady sure has had a tough time with his ears and sinuses ever since we got the new tubes last December. He was kind of sick when we put the new set in and I just don't think they ever really got a shot at working for him.
We've had a long few weeks with him now...poor little guy.
He got out of the hospital early last week after a four-day stay for pneumonia. I've nursed Grady during some tough illnesses over the past three years, but this last one actually has been the most difficult. It went like this:
Shortly after Grady's birthday party, he developed a body-wide rash. It looks just like his "infection rash" (whenever he's sick he gets a rash over his trunk), but this time it was head to toe, so we thought maybe it was a heat rash or something he picked up in daycare. Then over the next weekend Grady's eyes started looking "sick." I seem to be one of the few who notices "the eyes," but they tell me every time.
By Tuesday, daycare called and he was pushing 101 degrees. I called the ENT right away, as we had already had 4-5 ear infections since April and they said if we had anything weird pop up to call right away.
We saw Grady's ENT who confirmed it was a double ear infection. And not just that, but one of the worst cases she's seen. The kind that "you really don't see in modern medicine" any more. She wanted to do surgery to remove the 2nd set of tubes to put in a 3rd bigger set and clean out all the infection. She gave us an oral antibiotic. We went back the next day and the antibiotic wasn't going to cut it, so she ordered 3 shots of rocephin.
This shot hurts...a lot. So much so that they mix it with lydocain to try to help with some of the pain as it's injected. Three days of this for my tiny little three year old. She also ordered an Xray as she was worried about pneumonia.
The pediatrician we went to see said it wasn't pneumonia and wasn't going to do an Xray, but would start him on the shot and told us to do our Albuterol breathing treatments twice a day with him. The shot that night was horrible. Torture on him, and his mom and dad.
The next evening Kai took him in for the shot only. Even more horrible because now our little man knew exactly what was going to happen. Kai came home and said he was not going to be able to do the last one because it was so awful!
It didn't matter. By the next day, Grady was covered in hives. Allergic reaction to the be-all-to-end-all super-antibiotic Rocephin. I took him in and asked to see a doctor. Covered in hives, grayish in color, wheezing and exhausted. They measured his oxygenation - at about 81-82%. That's bad. They want 90 or above, with 95% or better being the goal. Pneumonia.
He was hospitalized that night, but not before a breathing treatment, Xrays, a big blood draw for tests, a nose swab and a lot of things that scared Grady so much. They had him at 2L of oxygen to start with and they were contemplating putting him on high flow that first night. It took four nights for him to get to a point where he could sleep and his O2 levels weren't dropping to a scary level. The 3rd night they also ended up hooking him up to a heart monitor as the oxygen monitor got a reading of his heart rate down in the 30s a couple of times during the night.
Needless to say, all of that was unsettling. We finally got released with a regimen of drugs and instructions to come back in a week to be cleared for surgery for the ears. I took him in a week later and although he physically looked better and had more energy, he still was wheezy, coughing and the like. The pediatrician did another swab, this time for bacterial issues, upped the current antibiotic dose and added on a second antibiotic, plus the continued two types of breathing treatments several times a day. Two days later we get the results of the swab.
"This is a very, very complicated situation," the pediatrician said slowly on the phone. Grady has a superbug. A bacteria that is resistant to everything, pretty much. At this point we have only two options. Start one oral antibiotic that is not approved for use in children (with some very scary possible side effects, some that may not show up for a long time after use) or hospitalize him again for 4-5 days on an IV antibiotic where he'll most likely pull his IV out and have to be traumatized over and over as they have to keep putting it back in.
Neither sound great. And the ultimate goal is to get him well enough for surgery. But he won't really be "well" until we can have surgery and get his ears, and possibly his sinuses, all clean and fixed. It's a horrible catch 22.
Who knows what he's been hearing, or not hearing, and for how long? And the scarred ears...will there be permanent damage and hearing loss?
And I feel awful that we've been pumping his already not-so-hot immune system full of antibiotics that did NOTHING but kill off his own good bacteria and helpful germ-fighting things. And as we go into this surgery I have to think about intubation and atlantoaxial instability, and his not-so-stellar performances with anesthesia and pain meds, and just the overall trauma that this poor kid has already endured and will be enduring again.
I'm scared to do the surgery; I'm scared not to do the surgery. We may show up tomorrow and they may say he's not well enough to be put under, but I think this is as well as he's going to get if we don't have the surgery.
I've been trying all weekend to put it in God's hands.
It's ultimately where I've put everything else in my life.
But I must have some unresolved issues with God thanks to what happened with Dad, because I'm having a hard time coming to an okay feeling about all of this.
The last time I felt like this before a surgery, Grady ended up being overdosed on a pain med and he coded. A breathless, lifeless, purple little boy in my arms.
I somehow knew that things were not going to be okay with that surgery.
Is that what I feel now?
Or is my angst over my Dad spilling over into this?
I guess I don't know, but will find out soon enough.
Something has to be done to help our little man get well.
I pray for his safety, for the skill of the medical staff, and for everything to be okay.
I pray, too, for my stable base of faith to return, because I'm not sure about getting over all of the known and unknown hurdles life throws at me without it.
It started as a quest to find old conversations with Dad.
What I found was an interesting history of Grady.
Grady sure has had a tough time with his ears and sinuses ever since we got the new tubes last December. He was kind of sick when we put the new set in and I just don't think they ever really got a shot at working for him.
We've had a long few weeks with him now...poor little guy.
He got out of the hospital early last week after a four-day stay for pneumonia. I've nursed Grady during some tough illnesses over the past three years, but this last one actually has been the most difficult. It went like this:
Shortly after Grady's birthday party, he developed a body-wide rash. It looks just like his "infection rash" (whenever he's sick he gets a rash over his trunk), but this time it was head to toe, so we thought maybe it was a heat rash or something he picked up in daycare. Then over the next weekend Grady's eyes started looking "sick." I seem to be one of the few who notices "the eyes," but they tell me every time.
By Tuesday, daycare called and he was pushing 101 degrees. I called the ENT right away, as we had already had 4-5 ear infections since April and they said if we had anything weird pop up to call right away.
We saw Grady's ENT who confirmed it was a double ear infection. And not just that, but one of the worst cases she's seen. The kind that "you really don't see in modern medicine" any more. She wanted to do surgery to remove the 2nd set of tubes to put in a 3rd bigger set and clean out all the infection. She gave us an oral antibiotic. We went back the next day and the antibiotic wasn't going to cut it, so she ordered 3 shots of rocephin.
This shot hurts...a lot. So much so that they mix it with lydocain to try to help with some of the pain as it's injected. Three days of this for my tiny little three year old. She also ordered an Xray as she was worried about pneumonia.
The pediatrician we went to see said it wasn't pneumonia and wasn't going to do an Xray, but would start him on the shot and told us to do our Albuterol breathing treatments twice a day with him. The shot that night was horrible. Torture on him, and his mom and dad.
The next evening Kai took him in for the shot only. Even more horrible because now our little man knew exactly what was going to happen. Kai came home and said he was not going to be able to do the last one because it was so awful!
It didn't matter. By the next day, Grady was covered in hives. Allergic reaction to the be-all-to-end-all super-antibiotic Rocephin. I took him in and asked to see a doctor. Covered in hives, grayish in color, wheezing and exhausted. They measured his oxygenation - at about 81-82%. That's bad. They want 90 or above, with 95% or better being the goal. Pneumonia.
He was hospitalized that night, but not before a breathing treatment, Xrays, a big blood draw for tests, a nose swab and a lot of things that scared Grady so much. They had him at 2L of oxygen to start with and they were contemplating putting him on high flow that first night. It took four nights for him to get to a point where he could sleep and his O2 levels weren't dropping to a scary level. The 3rd night they also ended up hooking him up to a heart monitor as the oxygen monitor got a reading of his heart rate down in the 30s a couple of times during the night.
Needless to say, all of that was unsettling. We finally got released with a regimen of drugs and instructions to come back in a week to be cleared for surgery for the ears. I took him in a week later and although he physically looked better and had more energy, he still was wheezy, coughing and the like. The pediatrician did another swab, this time for bacterial issues, upped the current antibiotic dose and added on a second antibiotic, plus the continued two types of breathing treatments several times a day. Two days later we get the results of the swab.
"This is a very, very complicated situation," the pediatrician said slowly on the phone. Grady has a superbug. A bacteria that is resistant to everything, pretty much. At this point we have only two options. Start one oral antibiotic that is not approved for use in children (with some very scary possible side effects, some that may not show up for a long time after use) or hospitalize him again for 4-5 days on an IV antibiotic where he'll most likely pull his IV out and have to be traumatized over and over as they have to keep putting it back in.
Neither sound great. And the ultimate goal is to get him well enough for surgery. But he won't really be "well" until we can have surgery and get his ears, and possibly his sinuses, all clean and fixed. It's a horrible catch 22.
Who knows what he's been hearing, or not hearing, and for how long? And the scarred ears...will there be permanent damage and hearing loss?
And I feel awful that we've been pumping his already not-so-hot immune system full of antibiotics that did NOTHING but kill off his own good bacteria and helpful germ-fighting things. And as we go into this surgery I have to think about intubation and atlantoaxial instability, and his not-so-stellar performances with anesthesia and pain meds, and just the overall trauma that this poor kid has already endured and will be enduring again.
I'm scared to do the surgery; I'm scared not to do the surgery. We may show up tomorrow and they may say he's not well enough to be put under, but I think this is as well as he's going to get if we don't have the surgery.
I've been trying all weekend to put it in God's hands.
It's ultimately where I've put everything else in my life.
But I must have some unresolved issues with God thanks to what happened with Dad, because I'm having a hard time coming to an okay feeling about all of this.
The last time I felt like this before a surgery, Grady ended up being overdosed on a pain med and he coded. A breathless, lifeless, purple little boy in my arms.
I somehow knew that things were not going to be okay with that surgery.
Is that what I feel now?
Or is my angst over my Dad spilling over into this?
I guess I don't know, but will find out soon enough.
Something has to be done to help our little man get well.
I pray for his safety, for the skill of the medical staff, and for everything to be okay.
I pray, too, for my stable base of faith to return, because I'm not sure about getting over all of the known and unknown hurdles life throws at me without it.
Sunday, September 5, 2010
Changer of the Toilet Paper Roll
For years now I've wondered if one of my main purposes in life is to be the Toilet Paper Roll Changer.
I grew up sharing a bathroom with three boys.
I changed the toilet paper roll most often of us all while there.
I went to college and had many roommates. The new roll often conveniently found its way to the floor or on the back of the toilet, but often not on the roll.
I now live in a house with a family who doesn't change the roll either. I can't really blame Kaitlynn, because she's five and those spring things can be tricky. However, I am quite certain that my husband could figure it out. I just went to the bathroom and there was the fresh roll, sitting atop a stack of magazines...just below where the toilet paper holder is placed nicely in the wall.
And at work...I am the one who, at least once a week, will change the toilet paper roll in at least one stall on 2nd floor. I'm not going to lie, the holders in those bathrooms are a bit tricky and it even took me a while to figure them out, but I've now become a pro because I'm not sure anyone else on my floor knows how to do it.
I believe there are two kinds of people on this earth. The kind who take charge, see a job that needs to be done, a way to make things easier and more organized for others, and they go right ahead and put that toilet paper on its holder. After all, that holder has a purpose - it was created solely to hold those rolls. If we don't allow the holder have the rolls, what a sad and sorry existence it has.
And there are the people who don't. They'll just let the roll sit on the cupboard, the floor, the back of the toilet, because it's easier at the time, or whatever the case may be on that day.
Some days, I really wish I could throw caution to the wind and just let that fresh, big roll of toilet paper sit in a spot not designated for it. Sometimes I wish I could just let go and rely on someone else to get that roll put into place.
And maybe I'm speaking metaphorically. Wouldn't we all like someone to take care of us once in a while, rather than perpetually be the one who everyone counts on to get the job done?
I sometimes think I would like that. But when the opportunity arises, and someone offers to do something for me, I totally blank. I have no idea what to ask for. I cringe at the thought of someone helping me out as I may appear lazy, incapable or some other despicable word.
And if someone did show up right now, wanting to help, I don't think there's a single thing I could think of that I'd feel comfortable asking them to do.
I guess, of course, they could change the next roll. :)
I grew up sharing a bathroom with three boys.
I changed the toilet paper roll most often of us all while there.
I went to college and had many roommates. The new roll often conveniently found its way to the floor or on the back of the toilet, but often not on the roll.
I now live in a house with a family who doesn't change the roll either. I can't really blame Kaitlynn, because she's five and those spring things can be tricky. However, I am quite certain that my husband could figure it out. I just went to the bathroom and there was the fresh roll, sitting atop a stack of magazines...just below where the toilet paper holder is placed nicely in the wall.
And at work...I am the one who, at least once a week, will change the toilet paper roll in at least one stall on 2nd floor. I'm not going to lie, the holders in those bathrooms are a bit tricky and it even took me a while to figure them out, but I've now become a pro because I'm not sure anyone else on my floor knows how to do it.
I believe there are two kinds of people on this earth. The kind who take charge, see a job that needs to be done, a way to make things easier and more organized for others, and they go right ahead and put that toilet paper on its holder. After all, that holder has a purpose - it was created solely to hold those rolls. If we don't allow the holder have the rolls, what a sad and sorry existence it has.
And there are the people who don't. They'll just let the roll sit on the cupboard, the floor, the back of the toilet, because it's easier at the time, or whatever the case may be on that day.
Some days, I really wish I could throw caution to the wind and just let that fresh, big roll of toilet paper sit in a spot not designated for it. Sometimes I wish I could just let go and rely on someone else to get that roll put into place.
And maybe I'm speaking metaphorically. Wouldn't we all like someone to take care of us once in a while, rather than perpetually be the one who everyone counts on to get the job done?
I sometimes think I would like that. But when the opportunity arises, and someone offers to do something for me, I totally blank. I have no idea what to ask for. I cringe at the thought of someone helping me out as I may appear lazy, incapable or some other despicable word.
And if someone did show up right now, wanting to help, I don't think there's a single thing I could think of that I'd feel comfortable asking them to do.
I guess, of course, they could change the next roll. :)
A Dream
Last night I dreamed of my dad.
He's been in my dreams a lot for several weeks, but last night's dream was of God granting me what my subconscious has been wishing for since my dad passed.
In my dream I begged and pleaded for just one more day with my Dad.
It started out so very sad with so much praying.
And the next thing I knew, my family was back in Cancun on the beach - one of my personal favorites of our family vacations.
He's been in my dreams a lot for several weeks, but last night's dream was of God granting me what my subconscious has been wishing for since my dad passed.
In my dream I begged and pleaded for just one more day with my Dad.
It started out so very sad with so much praying.
And the next thing I knew, my family was back in Cancun on the beach - one of my personal favorites of our family vacations.Dad was lying on a towel on the sand, although when we were actually on vacation there were lounging chairs. In my dream he was lying on right side, his right hand supporting his head from his elbow in the sand. His soft, fine, salt & pepper (more salt these days) hair blowing a bit in the breeze and he's laughing. A big, hard belly laugh.
And we're all there. Me, my brothers and my mom. And we're telling "remember the time" stories. We're all laughing. It is warm, it is peaceful, and the only thing I hear is so much laughing - my dad's deep laugh sounding above all the others. His head tosses back in bouts of laughter, and his left hand slices the air as he dramatically recounts stories.
And then all of a sudden dad starts to decline. I scream, "No! Don't take him yet. I wanted a whole day!" Apparently I forgot to clarfiy that I wanted the full 24-hours, not just the morning or afternoon or whatever time of day it was on the beach. I was trying to tell my dad to wait. I was screaming at God that it wasn't time yet.
I was losing my dad, again, and I couldn't stop it.
And then I hear crying.
It's my infant from the pack-and-play at the foot of the bed.
For the first time in a long time, I'm thankful to awake in the middle night *again* with my son.
That interruption allowed my pillow to stay dry, for last night, anyway.
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