When we got to FS, we ate at The Green Papaya with Dad and Neal (my youngest brother). It was YUMMY!
We stopped to see Mom and Ernie for a short visit before we headed home.
1 week ago
Monday, February 23, 2009
Monday (Just Not Today)
Last Monday the girls were out of school so we went down to visit my Daddy. It had been a very long time since we had seen him...I think we've only seen him for about five minutes since last July. Mackenzie had spent the night with Emily and I got the call when I was heading to pick her up "Can Emily come with us?" Of course! Valentine's Day Emily and family got a new addition - little Samson. He is the cutest thing!
When we got to FS, we ate at The Green Papaya with Dad and Neal (my youngest brother). It was YUMMY!
We stopped to see Mom and Ernie for a short visit before we headed home.
When we got to FS, we ate at The Green Papaya with Dad and Neal (my youngest brother). It was YUMMY!We stopped to see Mom and Ernie for a short visit before we headed home.
Sunday, February 22, 2009
Soon
Soon I will blog again...It's just been a little crazy with the Wine Opener and a few things we've been doing for the house (all day trip to Springfield to pick up flooring and a range). But, I have a few things to blog about and plan to do it in the next day or so.
I did want to share that the Wine Opener for the CFF was fantastic! Latest word is that we raised $50,000!! A GREAT BIG thank you to everyone that helped plan and/or supported this event!
I did want to share that the Wine Opener for the CFF was fantastic! Latest word is that we raised $50,000!! A GREAT BIG thank you to everyone that helped plan and/or supported this event!
Sunday, February 15, 2009
Last Week
I'm so far behind in posting!! So, this will be quite a bit from our past week (mainly from the weekend). Friday night Jason and I took Mackenzie out to eat at Guido's while Peyton went to KK's house for a sleepover.
Above - Anna, KK, Tyler Ann and Peyton.
Saturday after we picked Peyton up we ran a few errands for the house - looking at gas logs, cabinet knobs & drawer pulls and the list goes on and on. Will this house ever be finished? When will the decisions be over? Friday I picked up a paint fandex (fan deck?) - thinking it was going to fun to pick out paint colors. Nope, a little overwhelming actually. For lunch we ate at Jason's FAVORITE - Smokin' Joe's and stopped for ice cream at the HiDHo.
After all that eating we were heading home and passed a furniture store that was going out of business (and I'm so sad about this because it was a great one with things I loved) so we stopped to look and ended up finding bar stools for the island when we get in the house. When we got home we rested a little, Jason took the girls for a little batting practice then Mackenzie came home to get ready to babysit Kendall and Drew.
While Mackenzie was babysitting, Jason took Peyton on a little date (I stayed home to be close to Mackenzie in case of an emergency). They ate by candlelight at Chick fil A. So cute - look at that little rose in the cow's hand! Afterwards they went to Chuck E Cheese.
Peyton was out of school all last week so she had her Valentine's Day Party on February 6.
Here is Peyton one morning of her break running errands with me in her pajamas after we dropped Mackenzie off at school.
After all that eating we were heading home and passed a furniture store that was going out of business (and I'm so sad about this because it was a great one with things I loved) so we stopped to look and ended up finding bar stools for the island when we get in the house. When we got home we rested a little, Jason took the girls for a little batting practice then Mackenzie came home to get ready to babysit Kendall and Drew.
While Mackenzie was babysitting, Jason took Peyton on a little date (I stayed home to be close to Mackenzie in case of an emergency). They ate by candlelight at Chick fil A. So cute - look at that little rose in the cow's hand! Afterwards they went to Chuck E Cheese.
Peyton was out of school all last week so she had her Valentine's Day Party on February 6.
Here is Peyton one morning of her break running errands with me in her pajamas after we dropped Mackenzie off at school.
Friday, February 6, 2009
Go Fish!
Peyton's 2nd Grade Musical was last night. They performed 'Go Fish' - and Peyton was a Shark (she was also the understudy to the Tiger Shark). They performed Oceans of Fun, We're Sharks, Commotion in the Ocean, and Roundup Under the Sea.
Bailey, Mackenzie & Madison. (Little brother entertainment provided by Sam & Blake).
Bailey, Mackenzie & Madison. (Little brother entertainment provided by Sam & Blake). Thursday, February 5, 2009
Leighton
The Harpers got word last night that a heart for baby Leighton was on its way. Please keep Leighton and his family in your hearts, thoughts and prayers today. For updates, you can click on the "A Heart for Leighton" box to the right, it will take you to their CaringBridge site.
Tuesday, February 3, 2009
Peekaboo Article
Well, the February edition of Peekaboo has been delivered to local businesses with the article I wrote on Mackenzie and CF. I had a few friends already tell me they've read it (and learned more about CF). I also sold a few tickets directly because of the article. SO, even though I did not enjoy writing the article (I am not a writer!), I'm glad I did it.
Looking at Mackenzie you would probably never know she is living with a disease. Yet her body is in a constant battle. Some nights, when Mackenzie has an increased cough, I lay awake listening to her. The worries that I had when we first learned what cystic fibrosis was and what it meant for Mackenzie floods my thoughts and I wonder what irreversible damage is being caused to her lungs.
When my daughter, Mackenzie, was born she became one of 30,000. There are 30,000 children and young adults living in the United States with cystic fibrosis. Cystic fibrosis is a genetic disease that causes the body to produce thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas from helping the body to break down and absorb food.
When Mackenzie was born, she had a bowel obstruction and was flown by Angel One to Arkansas Children’s Hospital. She received her diagnosis at just four days old. We were devastated. We had heard of cystic fibrosis but really didn’t know what it was. After her diagnosis we went through several stages – including our own type of mourning. It wasn’t that we had lost a child, it was that we lost the life that we thought we were going to have.
We’ve spent the past eleven years tweaking her care as needed. Currently Mackenzie spends two hours a day doing chest physical therapy - treatments to keep her lungs as clear and healthy as she can. She does this by wearing a vest that vibrates to loosen the mucus and inhaling different medications using nebulizers. She also takes enzymes to help with her digestion. Four times a year she has an appointment with a fantastic pulmonary team at Arkansas Children’s Hospital. Her wonderful doctor, Dr. Robert Warren, encourages her to participate in physical activity to act as additional chest physical therapy and to not suppress her cough (coughing is very important for CF patients, but they sometimes suppress it to not draw attention to themselves). He also reinforces the importance of her nutrition. CF patients with 50% Body Mass Index have been shown to have better lung function but the problems with digestion mean she needs many more calories per day than most kids to achieve this and to grow. Mackenzie also is on rounds of antibiotics to battle bugs in her lungs. In our case, most of the time we are fighting staph.
Cystic fibrosis is not the same for every patient. Gene mutations, severity, and medications vary from patient to patient. Sixty years ago few children with cystic fibrosis lived to the age of five. When Mackenzie was born the average median age of survival was 31 and today it is 37. It is such a great improvement, but still a heartbreaking number for any parent.
We often joke that doing Mackenzie’s treatments is like brushing teeth, something we’ve been doing for so long we don’t have to think about too much. At four days old we were feeding her enzymes sprinkled on applesauce baby food with a spoon and “bopping” her for her chest physical therapy. I want to shout from the rooftops how proud I am of her for everything she does. I know she doesn’t want to wake up an hour earlier than her friends, spend two hours a day hooked up to tubes and take 30 pills a day – but she does it and almost always without complaining! On the rare occasions she does complain, it’s because treatment time is interrupting play time with her sister or her friends. I am so thankful for Mackenzie’s friends and Peyton – they are all so supportive and helpful. They make her feel good about her vest by thinking it’s so fun to put it on and vibrate, they help her remember her pills, and they don’t mind when she’s coughing.
I often wonder when Mackenzie sees her first star or before she blows out the candles on her cake if she wishes for puppies… a cell phone… clothes… or does she wish to not have cystic fibrosis. If by chance she is wishing to not have CF, there are a lot of people working on making that wish come true. I expect Mackenzie – and all the CF children I’ve met along the way – to live a long full life. Family, friends and strangers help us every year to raise funds that will make sure this happens. Not only does this research help to extend Mackenzie’s life but it also helps improve the quality of her life. Jason and I are fortunate to have very supportive friends – they bring us dinner after a hospital stay, they participate in fundraisers, and they listen to me when I need to vent. I’ve also met other CF parents that I now call my friends. We all work together to raise awareness and funds to keep increasing that average median age of survival and our children’s quality of life. All the while we work to fulfill the hope to grant my wishes — a cure for cystic fibrosis.
Living with Cystic Fibrosis
Looking at Mackenzie you would probably never know she is living with a disease. Yet her body is in a constant battle. Some nights, when Mackenzie has an increased cough, I lay awake listening to her. The worries that I had when we first learned what cystic fibrosis was and what it meant for Mackenzie floods my thoughts and I wonder what irreversible damage is being caused to her lungs.
When my daughter, Mackenzie, was born she became one of 30,000. There are 30,000 children and young adults living in the United States with cystic fibrosis. Cystic fibrosis is a genetic disease that causes the body to produce thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections. It also obstructs the pancreas from helping the body to break down and absorb food.
When Mackenzie was born, she had a bowel obstruction and was flown by Angel One to Arkansas Children’s Hospital. She received her diagnosis at just four days old. We were devastated. We had heard of cystic fibrosis but really didn’t know what it was. After her diagnosis we went through several stages – including our own type of mourning. It wasn’t that we had lost a child, it was that we lost the life that we thought we were going to have.
We’ve spent the past eleven years tweaking her care as needed. Currently Mackenzie spends two hours a day doing chest physical therapy - treatments to keep her lungs as clear and healthy as she can. She does this by wearing a vest that vibrates to loosen the mucus and inhaling different medications using nebulizers. She also takes enzymes to help with her digestion. Four times a year she has an appointment with a fantastic pulmonary team at Arkansas Children’s Hospital. Her wonderful doctor, Dr. Robert Warren, encourages her to participate in physical activity to act as additional chest physical therapy and to not suppress her cough (coughing is very important for CF patients, but they sometimes suppress it to not draw attention to themselves). He also reinforces the importance of her nutrition. CF patients with 50% Body Mass Index have been shown to have better lung function but the problems with digestion mean she needs many more calories per day than most kids to achieve this and to grow. Mackenzie also is on rounds of antibiotics to battle bugs in her lungs. In our case, most of the time we are fighting staph.
Cystic fibrosis is not the same for every patient. Gene mutations, severity, and medications vary from patient to patient. Sixty years ago few children with cystic fibrosis lived to the age of five. When Mackenzie was born the average median age of survival was 31 and today it is 37. It is such a great improvement, but still a heartbreaking number for any parent.
We often joke that doing Mackenzie’s treatments is like brushing teeth, something we’ve been doing for so long we don’t have to think about too much. At four days old we were feeding her enzymes sprinkled on applesauce baby food with a spoon and “bopping” her for her chest physical therapy. I want to shout from the rooftops how proud I am of her for everything she does. I know she doesn’t want to wake up an hour earlier than her friends, spend two hours a day hooked up to tubes and take 30 pills a day – but she does it and almost always without complaining! On the rare occasions she does complain, it’s because treatment time is interrupting play time with her sister or her friends. I am so thankful for Mackenzie’s friends and Peyton – they are all so supportive and helpful. They make her feel good about her vest by thinking it’s so fun to put it on and vibrate, they help her remember her pills, and they don’t mind when she’s coughing.
I often wonder when Mackenzie sees her first star or before she blows out the candles on her cake if she wishes for puppies… a cell phone… clothes… or does she wish to not have cystic fibrosis. If by chance she is wishing to not have CF, there are a lot of people working on making that wish come true. I expect Mackenzie – and all the CF children I’ve met along the way – to live a long full life. Family, friends and strangers help us every year to raise funds that will make sure this happens. Not only does this research help to extend Mackenzie’s life but it also helps improve the quality of her life. Jason and I are fortunate to have very supportive friends – they bring us dinner after a hospital stay, they participate in fundraisers, and they listen to me when I need to vent. I’ve also met other CF parents that I now call my friends. We all work together to raise awareness and funds to keep increasing that average median age of survival and our children’s quality of life. All the while we work to fulfill the hope to grant my wishes — a cure for cystic fibrosis.
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