This post logically would be next in line, yet I find myself having a hard time getting it started. I guess it's just hard to apply it to a blog that was intended to be about Logan, but Austin is also a huge reason behind our ties to CF.
Our son Austin was still born because of CF complications. He had a severe intestinal blockage. It was so extreme, his intestines pushed past his diaphragm. This cause his little heart to be under so much pressure it just couldn't beat anymore.
After many weeks of bed rest and a pretty miserable pregnancy I noticed I hadn't felt much movement. I went into the doctor. It was confirmed by ultrasound on the 6th of February that there was no heart beat. From the doctors office, I my husband was called at work and told to come to the office. We went directly to the hospital from there.
Austin came into this world at 34 weeks gestation on February 7th, 2001. He weighed 5lbs 6oz. He had short, dark, curly hair. He was buried on Feb 12th, 2001.
The following year, we took part in our local Great Strides walk in Modesto, Ca. While we were at the walk, I had an amazing opportunity to meet a mother of a little girl who had CF. She'd been diagnosed on ultrasound, when her OB noticed something all too familiar... Something he'd seen on my ultrasound. She was sent over for an emergency C-section, and at 2 days old her daughter had the life saving surgery my son didn't get the chance to have.
Some people don't understand my logic, but this actually brought me so much peace, and closure. I don't like to play the "what if" game about things of the past. I also believe everything happens for a reason. Because of Austin, this baby was saved. That was his purpose in the incredibly short amount of time he was ours.
I wish no mother would have to experience the loss I did. At least I know of one who didn't have to. I am so very grateful to our Heavenly Father, that he allowed me to witness first hand His plan. Being able to meet her surely wasn't coincidence or chance.
Sunday, January 30, 2011
Thursday, January 27, 2011
Our Fundraising Letter
This is the letter that will be passed around in emails, and posted on a few fliers. If you'd like to join our team and want to send out a fundraising letter too, feel free to just copy and paste this one or write your own too!
Most people would never know by looking at him, that Logan Moore has Cystic Fibrosis (CF). He is smart, funny, active, and social. He makes friends where ever he goes. He is confident, brave, and well spoken- a natural born leader. Most people can see these things in Logan.
What they don't know, is that Logan is a fighter. He works hard every day to stay as healthy as possible. Logan has been admitted to a hospital over a dozen times. He spends 3 total hours a day sitting, hooked up to a special machine that helps clear his lungs so he can breathe. Logan takes 18-25 pills each day.... and that's when he's healthy. He also takes 11 inhaled medicines a day. He even has to go to school with his PICC line in and do IV infusions in the nurses office when he gets sick. Through it all he wears a smile. He doesn't complain- he just keeps fighting each step of the way.
Along his journey Logan has aquired quite a crew of people to support him in his fight. He has, and will continue, to touch the lives of the people around him. There is no cure for CF, but they are close. Additional money is needed to help further the research efforts.
We are hoping you will join in Logan's Crew! There are so many ways to help: Join us in our walk on May 21, 2011 in Olympia. Click on the donate now button on the right so we can help improve the lives of all people with CF. At the very least, take a moment to stop by the Logan's Crew Blog and pass it along to your friends. Awareness is important! Go to loganscrew.blogspot.com (this blog- lol)to learn more about Logan and CF. Check back often as I will update frequently.
Thanks for your support,
The Moore Family &
Logan's Crew!
Most people would never know by looking at him, that Logan Moore has Cystic Fibrosis (CF). He is smart, funny, active, and social. He makes friends where ever he goes. He is confident, brave, and well spoken- a natural born leader. Most people can see these things in Logan.
What they don't know, is that Logan is a fighter. He works hard every day to stay as healthy as possible. Logan has been admitted to a hospital over a dozen times. He spends 3 total hours a day sitting, hooked up to a special machine that helps clear his lungs so he can breathe. Logan takes 18-25 pills each day.... and that's when he's healthy. He also takes 11 inhaled medicines a day. He even has to go to school with his PICC line in and do IV infusions in the nurses office when he gets sick. Through it all he wears a smile. He doesn't complain- he just keeps fighting each step of the way.
Along his journey Logan has aquired quite a crew of people to support him in his fight. He has, and will continue, to touch the lives of the people around him. There is no cure for CF, but they are close. Additional money is needed to help further the research efforts.
We are hoping you will join in Logan's Crew! There are so many ways to help: Join us in our walk on May 21, 2011 in Olympia. Click on the donate now button on the right so we can help improve the lives of all people with CF. At the very least, take a moment to stop by the Logan's Crew Blog and pass it along to your friends. Awareness is important! Go to loganscrew.blogspot.com (this blog- lol)to learn more about Logan and CF. Check back often as I will update frequently.
Thanks for your support,
The Moore Family &
Logan's Crew!
Wednesday, January 26, 2011
Logan's Story
The Diagnosis
Logan was born a healthy baby boy weighing in at 8lbs 1oz and was 21" long. Soon after getting him home from the hospital I began noticing extreme fussiness. He also had a huge appetite! My my concerns were mostly ignored by his doctor. By two and a half months he had been having recurring eye infections, obvious tummy pains with eating, and I began noticing swelling in his legs. A trip to the ER, test were run, and we were sent home with the Dr's statement "He's just getting Chubby!"
We followed up with his pediatrician 2 days later, who agree something was 'off', and suggested supplementing a few feedings with pediatlite- he thought he may be dehydrated. Later that day, we boarded a plane for a trip to visit Dad's family in Utah. Logan was a champ on the plane ride over, but as soon as we got in the car the fussing began. It didn't really stop the whole first night there. by the next morning Grandma (who is a nurse) suggested that if he isn't turning around by the evening we should take him to the children's hospital. I remember the numb feeling and uneasy stomach I had on the drive up there. We parked just as the sun was beginning to set- it was a typical beautiful SLC sunset over down town.
We checked in and sat down. His name was called soon after, we were instructed to get him undressed and place him on the infant scale. As soon as his little body hit the scale the nurse scoop him up and walked us into a room. Trauma Room #1 to be exact... that part is burned forever into my memory. The rest of the night however is a blurr... like a fast forward dream sequence in a movie. It included teams of doctors, lots of repetitive questions, words like tumors, crashing, neglect, CPS, "his body is shutting down", emergency surgery, and on and on. I remember the nurses... following me as I paced around. They kept trying to get me to eat, I guess I was going into a bit of shock and that's probably why the day is such a blur. Twenty seven unsuccessful attempts at placing an IV, and then they flew in a mediflight team of specialists and equipment to start his IV. I remember watching them hurry off the elevator know the room they were rushing towards contained my tiny baby.
It took a week before anyone thought to test for CF. Mostly because they'd come up empty with every other possible diagnosis. They came to deliver the news in a team, like he only had months to live. He was started on enzymes right away and with in days he was a completely different child. There were many other treatments done during this time. When he arrived his protein count was ZERO so his blood wasn't able to contain fluid, it all seeped into surrounding tissue. He was starving to death. He recovered, and left the hospital after a two week admission.
The First Year
I think Logan was admitted a total of 5 timed in his first year. The first 3 after diagnosis were all pertaining to his weight, and mild intestinal blockages. The 5th was because he got Coxaki (Hand Foot Mouth Disease). He lost a lot of weight and was on a NG tube (nasal feeding tube). He was released after regaining some weight, the day before his first birthday.
Ongoing Care
Let me try to sum things up quickly. Logan stayed out of the hospital for a full 2 years, but returned shortly after his 3rd birthday with a collapsed lung. He bounced back in less than a week and got let out early! This is also when he got his first of many PICC lines. He stayed a healthy for a few years after that and was admitted for a sinus surgery.
Since then Logan has remained fairly healthy. I am embarrassed to admit that I've lost count of sinus surgeries. A few were outpatient, but most were coupled with a 2 week clean out. He's bee treated at 3 different hospitals and although we weren't big fans of the drive (3 hours!) we sure miss UCSF. Our hospital right now is not a "children's hospital" so it does lack some of the luxuries we enjoyed at the last two places. However, we live less than 5 minutes from this one and we LOVE LOVE LOVE our doctors here! Also Logan is pretty much old enough to keep himself fairly entertained!
Otherwise
Logan leads a pretty active life. He tried out and made a swim team. He takes Tae Kwon Do and has already reached Orange Belt. He moves with such strength and ease, most would never guess he has CF. He loves to play with his brother and sister, his dog, listen to music, and spends far to much time texting friends! He's been able to gain some weight and though he's beginning to get another lung infection his doctors are pleased with how he looks right now.
Logan was born a healthy baby boy weighing in at 8lbs 1oz and was 21" long. Soon after getting him home from the hospital I began noticing extreme fussiness. He also had a huge appetite! My my concerns were mostly ignored by his doctor. By two and a half months he had been having recurring eye infections, obvious tummy pains with eating, and I began noticing swelling in his legs. A trip to the ER, test were run, and we were sent home with the Dr's statement "He's just getting Chubby!"
We followed up with his pediatrician 2 days later, who agree something was 'off', and suggested supplementing a few feedings with pediatlite- he thought he may be dehydrated. Later that day, we boarded a plane for a trip to visit Dad's family in Utah. Logan was a champ on the plane ride over, but as soon as we got in the car the fussing began. It didn't really stop the whole first night there. by the next morning Grandma (who is a nurse) suggested that if he isn't turning around by the evening we should take him to the children's hospital. I remember the numb feeling and uneasy stomach I had on the drive up there. We parked just as the sun was beginning to set- it was a typical beautiful SLC sunset over down town.
We checked in and sat down. His name was called soon after, we were instructed to get him undressed and place him on the infant scale. As soon as his little body hit the scale the nurse scoop him up and walked us into a room. Trauma Room #1 to be exact... that part is burned forever into my memory. The rest of the night however is a blurr... like a fast forward dream sequence in a movie. It included teams of doctors, lots of repetitive questions, words like tumors, crashing, neglect, CPS, "his body is shutting down", emergency surgery, and on and on. I remember the nurses... following me as I paced around. They kept trying to get me to eat, I guess I was going into a bit of shock and that's probably why the day is such a blur. Twenty seven unsuccessful attempts at placing an IV, and then they flew in a mediflight team of specialists and equipment to start his IV. I remember watching them hurry off the elevator know the room they were rushing towards contained my tiny baby.
It took a week before anyone thought to test for CF. Mostly because they'd come up empty with every other possible diagnosis. They came to deliver the news in a team, like he only had months to live. He was started on enzymes right away and with in days he was a completely different child. There were many other treatments done during this time. When he arrived his protein count was ZERO so his blood wasn't able to contain fluid, it all seeped into surrounding tissue. He was starving to death. He recovered, and left the hospital after a two week admission.
The First Year
I think Logan was admitted a total of 5 timed in his first year. The first 3 after diagnosis were all pertaining to his weight, and mild intestinal blockages. The 5th was because he got Coxaki (Hand Foot Mouth Disease). He lost a lot of weight and was on a NG tube (nasal feeding tube). He was released after regaining some weight, the day before his first birthday.
Ongoing Care
Let me try to sum things up quickly. Logan stayed out of the hospital for a full 2 years, but returned shortly after his 3rd birthday with a collapsed lung. He bounced back in less than a week and got let out early! This is also when he got his first of many PICC lines. He stayed a healthy for a few years after that and was admitted for a sinus surgery.
Since then Logan has remained fairly healthy. I am embarrassed to admit that I've lost count of sinus surgeries. A few were outpatient, but most were coupled with a 2 week clean out. He's bee treated at 3 different hospitals and although we weren't big fans of the drive (3 hours!) we sure miss UCSF. Our hospital right now is not a "children's hospital" so it does lack some of the luxuries we enjoyed at the last two places. However, we live less than 5 minutes from this one and we LOVE LOVE LOVE our doctors here! Also Logan is pretty much old enough to keep himself fairly entertained!
Otherwise
Logan leads a pretty active life. He tried out and made a swim team. He takes Tae Kwon Do and has already reached Orange Belt. He moves with such strength and ease, most would never guess he has CF. He loves to play with his brother and sister, his dog, listen to music, and spends far to much time texting friends! He's been able to gain some weight and though he's beginning to get another lung infection his doctors are pleased with how he looks right now.
Tuesday, January 25, 2011
For Logan
We have decided to participate in the 2011 Great Strides walk in Olympia! I will use this blog to keep you updated on our progress, and post interesting little CF blurbs too.
Also pretty cool, we will be joining forces with another Logan who also has CF. He's still a tiny and not even a year old. Keep checking back to see if we can surpass our goal!
Also pretty cool, we will be joining forces with another Logan who also has CF. He's still a tiny and not even a year old. Keep checking back to see if we can surpass our goal!
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