You know I am over due for a blog update when my husband reminds me I should really update the blog.
I know that I am overdue and its not from lack of trying I have a few entries started and I just couldn’t find the words. Sometimes this process of documenting our life good and bad is very therapeutic for me, and I know it will be cherished years to come when this day to day life as a mama with a young family is just a distant memory. What a gift it would be for me to have an opportunity to read what day to day life was like for my mom when she was busy raising three kids. Thankfully my mom was a big picture taker and I am the first born so lack of pictures are not the issue. The issue is the story… what was my mama thinking as she experienced my first Christmas, or when she was helping me blow out the candles at my first birthday?
I know that I want the stories to go along with the pictures not only for myself, but for Katy & Patrick. I want them to know what life was like in our family. What was important to us, what got us through the difficult times. Who we spent our time with.
At the same time I sometimes find it hard to find the words to write what I am feeling. Or I just don’t feel like sharing another Debby Downer Post. Because somewhere along this past year this blog has become less about The Murphy Family and more about medical updates on our Rock Star. Updates on Katy and her special heart are important and I definitely want/need that documented, but Katy’s heart doesn’t define our family, It doesn’t define Kate, it never has. These days it appears to be more front and center in both our minds and day to day life. Just like everything else in life I need to find that balance.
Finding balance has been a struggle for me in many if not all areas of my life. I wonder if its because of our unique situation of having a medically fragile child, mixed in with severe anxiety and depression due to having said medically fragile child. I just find that lately I don’t bounce back as quickly from admissions and or procedures that Katy has to endure. I don’t know if it is because they are happening more often thus the time in between is shorter and I don’t have time to rebound, or that her medical needs have changed so dramatically over the past six months that it is impossible to deny that Katy is very sick… that Katy is dependent on her Milrione pump which I hear every two minutes… and that the call that will change our lives is imminent.
(Katy all ready to go… I won’t tell you how many trips that looked like this were made before this one…if you came to visit and so Katy’s hospital room you can probably guess that it was more than 1 or 2)
Well that was a long intro…
Katy girl is doing well. We have had a few hiccups with her Picc line and have spent more time in the ER than we would have liked. (Still 1000X better than being impatient.) Thankfully since having her line replaced last week we have had no issues with her line. Milrione has proved to be the miracle drug that has taken Katy from so so for transplant to should be a rock star through transplant and recovery. She has FINALLY after two years and lots and lots of calories… gained significant weight. Rumor has it she may even place on the growth chart less than 5% but on the growth chart and that is AMAZING!! She has grown so much (6 pounds and 1 inch in 8 weeks) that she required a whole new wardrobe. She has finally outgrown her 12, 18 & 24 month clothing. There have been a few calls for possible hearts for Katy… in which she was #3 or 4 in line for…which is why the team thinks the call for the perfect new heart for Katy should be soon.
It looks like Katy will be going back to school!!! A couple times a week for a few hours. I am required to be in the building with her just in case something should happen to her line. We are all very excited that she will have the opportunity to be back at the Dolbeare School.
Patrick is starting Pre K at Little Treasures this year… I can’t believe he is already moving up to an older classroom. Little Treasures has been such a blessing for our family especially Patrick. It’s his retreat from this crazy life!! He loves his friends , teachers and most of all outside time.
As for Mike and I… oddly enough we are still madly in love! Getting each other through the good time and bad!