So I am just one of the blog followers, and everytime I read it, I crack up on the way that Rob puts his thoughts in writing. Its so funny and inspiring at the same time. I wanted to tell you all that you are such a great, close knit family and it really pays off for all of you. Charlie is so cute and the reason I got into following his blog, is through KSL, I love that site. This story really sucked me in for the fact that your all such a wonderful family, Charlie is such a doll, and the fact that I have many experiences with Primary Childrens Hospital. Primary Childrens has worked miracles for my family and I. I have a cousin that has a heart condition (that we didnt know about), we went swimming one day, she had a cardiac arrest and ended up under the water for about 7 min before I found her at the bottom. The Drs didnt give her a chance in surviving and to top it all off her parents were on a cruise. They received a message aboard their cruise ship that their daughter had drowned and they needed to get back to Utah. It was a really grueling experience for the family watching and waiting to see what would happen. She was in a coma for 3-4 weeks and then had to re-learn how to walk, eat ect. again. She has survived this ordeal, and hasnt had any problems since. She is a healthy 25 year old, married and trying for a baby. (This happened when she was 11). So I do believe in miracles.
Also I had a baby when I was 18 years old, a little girl.(I know what your thinking Rob, "wow she started young"!) Its okay its the truth. Anyway I had no idea how to be a mom, and everything was very new to me. My daughter spiked a high fever and we ended up in Primary Childrens as well. The worst thing was all the tests they had to perform on her being 1 1/2 months old. The spinal tap was the worst. We finally found out that she had what is called Renal Reflux (where her urine doesnt drain out all the way and it comes back up to her kidneys, causeing urinary tract infection), she also had a blood infection in which we stayed for about a week on IV medications (which is nothing compared to your stay, you have us beat). She did have to take medications by mouth for a year, but the problem did fix itself. Thank God.
Okay and here is another story for you (yeah, I am not done yet! ha ha ha) My husbands goddaughter was diagnosed with Leukemia (ALL) a couple of years ago, which she stayed for about a year in the hospital due to treatments, complications ect. She is doing great now, has been clear for about a year with no signs of it coming back. She does have to be tested every couple of months, but hey you do what you got to do even if it means having your kids get poked by a needle every couple of months.
I also have a stepsister that works at Primary Childrens (AMY) she was one of charlies nurses & two other friends that work there. I love that place.
Okay so this is the end (Thank God huh!). I just wanted to say that your family is awesome, and I wish the best for you all. Believe in miracles because they do happen.
Monday, August 4, 2008
I happened onto your site via another site. I am not even sure which one, but i am glad that i found you guys. My heart was regularly touched by reading everything going on with your family. And often i cried, reliving too much of my own story.
in oct of 2006 my son was born with a rare heart defect. Our large childrens hospital only see this heart defect 1 time every 2-3 years. So we were the lucky ones. In fact, we are the lucky ones. He was diagnosed at 5 days old and had open heart reconstruction at 15 days old. During this time, we stayed in the ICU on a vent for 30 days. We came home on oxygen and a pretty sick kid. However, with a lot of time, TLC and patience, we now have a healthier heart kid.
I am SO jealous of the book of charlie's story that was made by someone special for you guys. I did not know about blogging when this all happened and therefore, I sent out mass e-mails each day. Even to this day, i cannot go back and read them, even though i want to. I want to print them out and save for him, but i cannot go back there, not yet.
I am often thought of writing a book called, Grieving Normalcy. Unless you have gone thru this kind of ordeal, you just do not understand how much it affects the ENTIRE family. Our dtr was 3 when miles was born and she still has some PTSD when we go to the hospital. It changed our family for the better. I am now a part-time SAHM and a Physical therapist. (I could see many sides of your story). You world changes in such a dramatic way, you cannot do "normal" things, like just going out to dinner, or a quick dash to the store. The cost of everything is so expensive and we have great health insurance. (our son's hosp stay was $500,000 but we paid $500 total). We really had to watch out for germs and that is not easy with another kid in daycare. Normalcy has slowly approached our life and therefore the book is less a priority. However, we also work to raise money, but ours is for the American Heart Association. THis year our goal is $10,000, even though we are not close yet. It just seems harder to get people to give this year.
I love listening to all the changes and i am just so proud of you guys as a family. I believe that everything happens for a reason. WE were chosen for this as our jobs as parents, and hey, you guys are doing such a great job. Please check out our blog, http://www.proofofpurpose.blogspot.com/
thanks for sharing, hope to keep in touch
mother of sophia and miles- truncus arterious repair in 2006