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| February 29, 2008 |
It's hard to believe, but it's been 5 years.
5 years since our world was drastically turned upside down.
5 years of medicine.
5 years of hospital visits.
5 years of living a different life than we had planned for our family and for our sweet little boy.
On February 29, 2008, Parker was admitted to Brenner Children's hospital after it was discovered that he had an enlarged heart. Within just an hour or two after arriving at the hospital, Parker was diagnosed with a rare, incurable condition called Pulmonary Hypertension. (To read the story go here.) So much has happened since then--it seems like it was such a long time ago, but at the same time it doesn't seem possible that we have come this far.
When Parker was first diagnosed with PH, the doctors gave us a pretty grim prognosis. With the severity of Parker's condition, the doctors were not optimistic about what was in store for him. 6 weeks after his initial diagnosis, we almost lost Parker due to a pulmonary hypertensive crisis following his first right heart catheterization. The doctors told us then that his only option for survival was a lung transplant. Naturally, this was hard to hear and even harder to accept. How could this be real? This wasn't supposed to happen to our family. To our baby boy. But, it did happen, and we learned very quickly that our life as we knew it would never be the same. It was hard not to ask the question, "Why is this happening?", but we realized that focusing on that would not help Parker. We relied on Heavenly Father for strength and wisdom and with faith and trust in Him we made it through a very overwhelming and scary experience.
It has not been easy.
The first year was pretty rough. Trying to find a "new normal" was hard. Parker started to slowly make progress. He started eating better and he gained weight. He got stronger and stronger and finally began meeting the "big" milestones like crawling and walking. We got stronger too.
The second year was a little better than the first. We had some experience under our belt, but things were still hard. Things started to get a little easier once Parker was approved for a nurse through the CAP-C program (see story here).
In the fourth year, Parker graduated from preschool and played in the ocean for the first time (with an IV!).
In the 5th year Parker started school, a day we had been anticipating with much trepidation since his diagnosis. How do you send a kid to school with a permanent IV?!? I'm still not quite sure, but we're doing it! Even though Parker had to get another new tube and pneumonia, it was still a good year.
And here we are today, 5 years later.
5 years of turning our world right side up again.
5 years of medicine.
5 years of hospital visits.
5 years of cherishing every single moment.
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| February 28, 2013 |
1 comment:
I can't believe it's been 5 years! He's a survivor! And your family is amazing. So excited to see you soon.
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