I am so proud of my CHERUB. Yesterday was his school science fair. We thought long and hard on his project. Did he want to do an experiment or do some sort of display? With everything he's been through, he is a walking science fair project himself He finally decided that he wanted to make his project about CDH. As he stated "I want people to know about me". Talk about wanting to raise awareness!
He read books about the human body, especially about the lungs and diaphragm and how they worked. We pulled up information from the CHERUBS website about what a diaphragmatic hernia was, treatment options and how it is diagnosed. I read that information to him, highlighting the areas he thought were important. We talked about his scars, what happened to him in the hospital, well, basically his story.
Then the big day finally arrived. We pulled out a box with a brand new feeding tube and a trache to use as visuals. I think I was more nervous than him. The judges reviewed the projects during the day, allowing time for each grade to make their rounds through the projects. At 5:30pm family members were allowed to walk through the fair with awards being announced at 6:30pm.
We had talked about the fact that there were only 3 awards and 5 projects for his grade. He was pretty confident that he would win something. I just wasn't as sure. I knew that he learned something about CDH and himself plus raised awareness so I was happy. Imagine all of our surprised when it was announced that he won 2nd place! He looked so great walking up to get his ribbon while wearing his CDH Super Hero t-shirt.
So how much awareness was raised? His school has approximately 670 students and 70 staff members. There were about 150 participants in the fair. If you think of each student at the fair having two parents (or more) come to visit plus friends and extended family, that equals out to a lot of people. What I did find surprising was there were two families there that knew about CDH. One met someone in the hospital two years ago while the other had a nephew with CDH.
What did I learn from this? You can raise awareness in all different ways, even when you are 7 years old.
Way to go, Buddy!!!
Friday, March 11, 2011
Saturday, February 26, 2011
Date Recall
I'm sure most of us can recall the date of birthdays, wedding anniversaries or other major milestones in our lives. But do you ever look at the calendar and recall other events in your life?
I've already mentioned that each December 31st I remember I found out I was pregnant with Taylor. April 19th was the day my whole world changed by hearing the words "Your baby has what is called a congenital diaphragmatic hernia". February 3rd is the date of when Taylor finally came home from the hospital after being there for 5 1/2 months. And then there is February 16th.
Seven years ago on February 16th, the nurse and I just finished giving Taylor a bath. My daughter, then just 6 years old, asked if she could hold Taylor while we moved his ventilator from his bedroom into the living room for a change of view. While we were moving the equipment, Dani commented that he had started to cry. Ok, no reason to panic because that had happened before. Then she said that he looked kind of funny...maybe even a little blue.
I remember the nurse springing into action as though it just happened minutes ago. She gently took Taylor and put him on the floor while calmly telling me to get the oxygen tank from his room. I grabbed the oxygen cart with the ambu bag attached, turning on the oxygen as she bagged him and calmly talked to him. We could hear the oxygen, but it didn't seem to be working. We soon found out that there were two bags, but, of course, only one was attached to the oxygen. Working swiftly the nurse bagged him while I put the oximeter on his foot.
What terror ran through my body when I realized his oxygen level was in the mid-30's and dropping. Should I call 911? Should I call my husband? The thoughts were running through my mind while I fought back the tears and the urge to yell at Taylor to pink back up. The level hit 30 and then slowly started to creep back up. All this time the nurse kept doing her job of bagging him and calmly talking to him as though this was an every day occurrence for her. Just as quickly as it started, we were back to a pink smiling baby.
It was a day I will never forget. It is a day my daughter will never forget. After recently running into the nurse I found out it is a day she will never forget. We found out that it was her first emergency ever. She had never had to do anything like that before, but the way she handled herself sure made you think she did it all of the time. For that I am eternally grateful.
What dates do you remember?
I've already mentioned that each December 31st I remember I found out I was pregnant with Taylor. April 19th was the day my whole world changed by hearing the words "Your baby has what is called a congenital diaphragmatic hernia". February 3rd is the date of when Taylor finally came home from the hospital after being there for 5 1/2 months. And then there is February 16th.
Seven years ago on February 16th, the nurse and I just finished giving Taylor a bath. My daughter, then just 6 years old, asked if she could hold Taylor while we moved his ventilator from his bedroom into the living room for a change of view. While we were moving the equipment, Dani commented that he had started to cry. Ok, no reason to panic because that had happened before. Then she said that he looked kind of funny...maybe even a little blue.
I remember the nurse springing into action as though it just happened minutes ago. She gently took Taylor and put him on the floor while calmly telling me to get the oxygen tank from his room. I grabbed the oxygen cart with the ambu bag attached, turning on the oxygen as she bagged him and calmly talked to him. We could hear the oxygen, but it didn't seem to be working. We soon found out that there were two bags, but, of course, only one was attached to the oxygen. Working swiftly the nurse bagged him while I put the oximeter on his foot.
What terror ran through my body when I realized his oxygen level was in the mid-30's and dropping. Should I call 911? Should I call my husband? The thoughts were running through my mind while I fought back the tears and the urge to yell at Taylor to pink back up. The level hit 30 and then slowly started to creep back up. All this time the nurse kept doing her job of bagging him and calmly talking to him as though this was an every day occurrence for her. Just as quickly as it started, we were back to a pink smiling baby.
It was a day I will never forget. It is a day my daughter will never forget. After recently running into the nurse I found out it is a day she will never forget. We found out that it was her first emergency ever. She had never had to do anything like that before, but the way she handled herself sure made you think she did it all of the time. For that I am eternally grateful.
What dates do you remember?
Thursday, February 24, 2011
Yet Another Scar
A little over a week ago it was about 50 degrees and sunny here in Minnesota. The snow was starting to melt so you could finally see over the snowbanks once again. What a great day!
On Sunday I told the kids to put on their winter clothes so they could go outside and play. With the snow melting, it was great weather for making a snow fort while I chipped away at the ice building up in the gutters of our house.
The three of us had been outside for a few hours when I noticed Taylor and the neighbor boy playing on top of the snowbank. I told them they should get down since the snow was getting pretty slick. I no sooner walked across the street and back up the ladder when I heard my daughter scream Taylor's name. He slid down a different snowbank, head first onto the sewer grate below. He was crying, but who wouldn't be after an accident like that?
I calmly walked across the street to get him and bring him home. I told him that I had warned him about being up there. I tried to calm him down, but to no avail. When he got into the house, I called for my husband to come help get Taylor's wet clothes off of him. Then I started to take the hat off and saw a trickle of blood. It was no longer a call to my husband, but an all out scream for help.
We quickly got cleaned up and headed to Urgent Care. Turns out that Taylor had a 3cm gash at the top of his head that required three staples. Yet another scar.
When people saw the stitches they would make comments that boys like scars. Scars show character. Scars are "manly".
This makes scar number 15 for my little guy. To me his scars are a constant reminder of what he has been through. A reminder to be grateful that I have my little guy, because 50% of the parents with the same birth defect don't have that ability. A reminder of our journey that didn't end when Taylor left the hospital or even when he was decannulated. A reminder of why there is CDH and why we need to raise awareness.
On Sunday I told the kids to put on their winter clothes so they could go outside and play. With the snow melting, it was great weather for making a snow fort while I chipped away at the ice building up in the gutters of our house.
The three of us had been outside for a few hours when I noticed Taylor and the neighbor boy playing on top of the snowbank. I told them they should get down since the snow was getting pretty slick. I no sooner walked across the street and back up the ladder when I heard my daughter scream Taylor's name. He slid down a different snowbank, head first onto the sewer grate below. He was crying, but who wouldn't be after an accident like that?
I calmly walked across the street to get him and bring him home. I told him that I had warned him about being up there. I tried to calm him down, but to no avail. When he got into the house, I called for my husband to come help get Taylor's wet clothes off of him. Then I started to take the hat off and saw a trickle of blood. It was no longer a call to my husband, but an all out scream for help.
We quickly got cleaned up and headed to Urgent Care. Turns out that Taylor had a 3cm gash at the top of his head that required three staples. Yet another scar.
When people saw the stitches they would make comments that boys like scars. Scars show character. Scars are "manly".
This makes scar number 15 for my little guy. To me his scars are a constant reminder of what he has been through. A reminder to be grateful that I have my little guy, because 50% of the parents with the same birth defect don't have that ability. A reminder of our journey that didn't end when Taylor left the hospital or even when he was decannulated. A reminder of why there is CDH and why we need to raise awareness.
Wednesday, February 23, 2011
That Ah-ha Moment
Have you ever wanted to do something that would make a difference, but feel like you are just spinning your wheels? Your try and try and wonder if you aren't going anywhere because you aren't trying hard enough or doesn't anybody really care? Then along comes the Ah-ha moment when you realize you are making a difference. That happened to me today.
I know that I promised that I would try to keep this blog up-to-date, be much more diligent about writing. Then I became a little depressed. Did anybody really care about what I was writing? Was anybody really reading it? I admit that I took a little break to wonder if I was doing the right thing or not. Why was I wanting to be a part of CHERUBS? Was it really where I was suppose to be?
Then Dawn, the founder of CHERUBS, sent out a video about the volunteer responsibilities. That desire to help out was renewed a little bit. I wasn't doing my responsibilities like I should have and I was feeling guilty. I checked my e-mails only to find three responses from the letters that I had written to the CHERUBS members. Each of them told me their story and how they would like to help out in MN! How great is that? That desire to help out is burning much greater now.
I have once again realize why I am volunteering. I want to make a difference. I am making a difference. I will make a difference in the future, but only by doing what I am suppose to be doing. Even when I don't see immediate results, I know that I AM making a difference.
I know that I promised that I would try to keep this blog up-to-date, be much more diligent about writing. Then I became a little depressed. Did anybody really care about what I was writing? Was anybody really reading it? I admit that I took a little break to wonder if I was doing the right thing or not. Why was I wanting to be a part of CHERUBS? Was it really where I was suppose to be?
Then Dawn, the founder of CHERUBS, sent out a video about the volunteer responsibilities. That desire to help out was renewed a little bit. I wasn't doing my responsibilities like I should have and I was feeling guilty. I checked my e-mails only to find three responses from the letters that I had written to the CHERUBS members. Each of them told me their story and how they would like to help out in MN! How great is that? That desire to help out is burning much greater now.
I have once again realize why I am volunteering. I want to make a difference. I am making a difference. I will make a difference in the future, but only by doing what I am suppose to be doing. Even when I don't see immediate results, I know that I AM making a difference.
Monday, January 24, 2011
CHERUBS Needs Volunteers
We are in the last week of the January voting for the Pepsi Refresh Project. We are in desperate need of volunteers to vote. Are you aware of all of the ways you can vote EVERY DAY?
You can vote 5 ways EVERY DAY:
1. at Pepsi's site - http://pep.si/voteforkidshealth
2. by text (see codes below)
3. by Facebook Application - http://www.facebook.com/apps/application.php?id=263136462520
5. by android - http://www.androidzoom.com/android_applications/lifestyle/pepsi-refresh-project_nfii.html
Vote for all 10 charities at http://pep.si/voteforkidshealth
* ACTD - #64 in $50,000 (moved up 1 spot). Text 103679 to Pepsi (73774)
* Alyboo and Izybee Foundation - #47 in $50,000 (moved up 4 spots). Text 105431
* Birmingham Royal Oak Medical ...Group - #37 in $25,000 (holding). Text 104303
* Challenger Learning Center of Kentucky - #44 in $50,000 (moved back 2 spots). Text 104476
* CHERUBS - #18 in $25,000 (moved up 5 spots) Text 101202
* Children's Hospital of the King's Daughters - #12 in $250,000 (moved back 1 spot). Text 104850
* Congenital CMV Foundation - #21 in $5,000 (holding steady). Text 104946
* MedZou Clinic - #23 in $50,000 (moved back 1 spot). Text 103787
* Visually Impaired Preschool Services - #35 in $250,000 (moved back 1 spot). Text 104721
* YMCA of the North Shore/Salem YMCA - #43 in $50,000 (moved back 1 spot). Text 105253
We need every vote we can get to help out critically ill babies and children.
That isn't the only way you can help out with CHERUBS. We are looking for volunteers to help with CHERUBS directly. We are looking for hospital angels in Minnesota. Also we need people to help raise awareness in Minnesota about CDH. Maybe you are interested in contacting your local paper and/or tv and radio stations. There are so many other areas of volunteering available. The list is practically endless. If you are interested in helping out, please feel free to contact me or CHERUBS directly.
Thank you.
Thursday, January 13, 2011
New Year's Resolutions Revisited
We are almost half way through the first month of 2011. Hard to believe isn't it? Where does time go?
How are we doing on those resolutions? I've improved, but I'm not where I want to be on them. But, the way I look at it, I have a whole year to improve. After all, it is a resolution for the whole year. By the end of this year, I want to be better than I was the previous year at that time. Maybe I don't see it the way I should, but each to his own, right?
I've been focusing more on my family. I'm trying to get projects done that I've promised over and over again to complete. I've been watching what I eat a lot more. And that doesn't just mean watching it go from my plate to my mouth. : ) I've been trying to make more balanced meals for my family. Trying to eat at home more than out. I'm trying to work with my son on his homework. He is having a hard time focusing at home and in class. And we've been spending more time as a family. Must be working because my daughter even mentioned it the other night on how much she appreciates us being able to sit around and talk at night after dinner.
I've been trying to do volunteering in different aspects this year. I want to know my volunteering is making a difference. I still volunteer at my son's school, but more for the teacher than as a whole. I've been trying to come up with more CDH awareness ideas. So far, one is that my son's science fair project is "What is CDH?". Since he's still in 2nd grade I can help him out with it a little more than I would next year. I decided it was a perfect way of bringing awareness to his school.
Keep working on those resolutions. Even if the year didn't go exactly the way you intended, in my eyes you still have another 11 1/2 months to work on them.
How are we doing on those resolutions? I've improved, but I'm not where I want to be on them. But, the way I look at it, I have a whole year to improve. After all, it is a resolution for the whole year. By the end of this year, I want to be better than I was the previous year at that time. Maybe I don't see it the way I should, but each to his own, right?
I've been focusing more on my family. I'm trying to get projects done that I've promised over and over again to complete. I've been watching what I eat a lot more. And that doesn't just mean watching it go from my plate to my mouth. : ) I've been trying to make more balanced meals for my family. Trying to eat at home more than out. I'm trying to work with my son on his homework. He is having a hard time focusing at home and in class. And we've been spending more time as a family. Must be working because my daughter even mentioned it the other night on how much she appreciates us being able to sit around and talk at night after dinner.
I've been trying to do volunteering in different aspects this year. I want to know my volunteering is making a difference. I still volunteer at my son's school, but more for the teacher than as a whole. I've been trying to come up with more CDH awareness ideas. So far, one is that my son's science fair project is "What is CDH?". Since he's still in 2nd grade I can help him out with it a little more than I would next year. I decided it was a perfect way of bringing awareness to his school.
Keep working on those resolutions. Even if the year didn't go exactly the way you intended, in my eyes you still have another 11 1/2 months to work on them.
Saturday, January 1, 2011
New Year's Resolutions
Today is the first day of 2011. The time of the year when people make resolutions, a commitment that they are making (usually to themselves) for the next year. A time to start with a clean slate. Maybe they pledge to work out more, eat healthier, find a new job, volunteer more, quit smoking.... The list is endless. Did you make a resolution this year?
Each year I contemplate if I'm going to make a resolution for the year. It is usually to work out more and eat healthier. I'm usually pretty good about it too. For a month. By the time February rolls around, I am right back to my old habits. I admit I'm addicted to sugar. I start off with all of the candy that the kids received over Christmas, because the Halloween candy is long gone by now. Then comes Valentine's Day. I'm ok with the chocolate, but those Brach's sour cherries are my downfall at this time of the year. You can only find them from now until the middle of February. Then comes Easter with the jelly beans. Jelly beans! To me, they are the best candy ever created. So much, in fact, that my husband proposed to me by hiding my ring in a ginger jar full of Jelly Bellies. Then I get upset with myself that I gave into all of it and packed on a few pounds, just in time to start pulling out the shorts. Yikes!!! But when January 1st rolls around, I'm ready to try to make the same pledge.
So, if I'm going to make a resolution, it is going to be one that I know I can stick to for the year. Our pastor once said his resolution was to never turn down free pizza. That's the kind of resolution I can keep. I once joked that my resolution was to not make a resolution for the year. And since it was a resolution that I broke immediately, I didn't have the guilt over the other 364 days of the year.
This year I am making a resolution. It is "To Do My Best". To do my best at what? Whatever I am doing. To do my best at being a mother, a wife, a sister and daughter. To do my best as an employee and a volunteer. To do my best as a friend. To just do my best. After all, isn't that what I tell my kids? They may not win a game, but as long as they did their best, that is all that matters.
So here's to a brand new year. A year of doing my best. What's your resolution?
Happy New Year!!!
Each year I contemplate if I'm going to make a resolution for the year. It is usually to work out more and eat healthier. I'm usually pretty good about it too. For a month. By the time February rolls around, I am right back to my old habits. I admit I'm addicted to sugar. I start off with all of the candy that the kids received over Christmas, because the Halloween candy is long gone by now. Then comes Valentine's Day. I'm ok with the chocolate, but those Brach's sour cherries are my downfall at this time of the year. You can only find them from now until the middle of February. Then comes Easter with the jelly beans. Jelly beans! To me, they are the best candy ever created. So much, in fact, that my husband proposed to me by hiding my ring in a ginger jar full of Jelly Bellies. Then I get upset with myself that I gave into all of it and packed on a few pounds, just in time to start pulling out the shorts. Yikes!!! But when January 1st rolls around, I'm ready to try to make the same pledge.
So, if I'm going to make a resolution, it is going to be one that I know I can stick to for the year. Our pastor once said his resolution was to never turn down free pizza. That's the kind of resolution I can keep. I once joked that my resolution was to not make a resolution for the year. And since it was a resolution that I broke immediately, I didn't have the guilt over the other 364 days of the year.
This year I am making a resolution. It is "To Do My Best". To do my best at what? Whatever I am doing. To do my best at being a mother, a wife, a sister and daughter. To do my best as an employee and a volunteer. To do my best as a friend. To just do my best. After all, isn't that what I tell my kids? They may not win a game, but as long as they did their best, that is all that matters.
So here's to a brand new year. A year of doing my best. What's your resolution?
Happy New Year!!!
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