Life is crazy good here!! So good, it's has kept me beyond busy and I haven't been able to update Zoe's blog in almost a month- So here goes...
As a result of Zoe's improptu new central lince surgery, she now has perfect skin and is a whole new child. A little background on this: One of the side effects of her flolan medication is that it causes her skin to flush a lot to the point where people ask me if Zoe has measles when we are out and about ( Umm, would I have my kid in public if she had measles? ummmm, NOOOOOO). The last few months before her new line, her skin had been flushed and rashy 24 hours a day. The second her flolan was hooked into her peripheral IV in her foot when we got to the hospital, her skin cleared up. It has been perfect ever since. Every now and then she gets a few little specks of red color and then it goes away a few minutes later. It's AMAZING!!!!! Her cardiologist and pediatriacian have no logical explanation for why a new line a placement would make so much difference but it has. The new line rests an inch or so farther down in her heart and maybe this is the difference. Our theory is that the tip of the old line was irritiating her more than she was able to communicate. Not only does she have perfect skin now, she is happier, more energentic, eating more, more outgoing, sillier and more self-sufficient. I know this all sounds crazy, but it's too much of a coincidence to assume that it is all age related, I think she was constantly irritated by the old line to the point it affected all aspects of her life. When Zoe used to be in social settings, she was very shy and stayed back from the other kids, now she just jumps in. She used to need to nap at 11:30 on the dot, now she can stay awake until 3PM if she is loving what she is doing. She is also starting to walk again. For the last three months, she has not wanted to walk anywhere, even with help. Now she grabs your hand and walsk all over- to the mail box, at the mall, to pet our new kitty, around the garden. Her OT brought her a walker the other day and Zoe loves it- she scoots around our house in it and when we take it outside she will go from the studio to the farmhouse up the sidewalk- INCREDIBLE!
All this new found freedom and eating has led to a much more normal life, almost too normal. I signed on for doing costumes for two shows for the first time since Zoe has been here. I'm doing Sound of Music in Decemeber for Ovation Theatre on Bainbridge and Philadelphia Story for Bainbridge Performing Arts in February. I'm really excited, it's been great to have something to obsess about other than Zoe for once. It's feels great to have a bit of balance back in our lives.
We just spent a great weekend at my parents cabin on tee lake with a bunch of friends from highschool and their children. Zoe had a blast being the center of attention. She out ate every kid there, I'm pretty sure, and she mastered the up and down of stairs while she was at it.
We also had a great day at the county fair with my mom and Zoe's cousins. Zoe loved the merry go round and the little car ride. She must haev gone on them 10 times. Her zest for life is mesmerizing and so her joy is so rewarding.
Zoe starts a preschool next week, two hours a day twice a week. It' s withother special needs children, but it is still all on her own, so we are really excited to see how she will do andwith all the progress she's made lately, I think it's going to be amazing.
It's hard to believe summer is almost over and germ season is here again. here's hoping Zoe stays strong and healthy and loves life.
On another note, Zoe was just honored by being asked to be part of a "Wall of Courage" for Seattle Children's Hospital. This is a permanent photo display that will be shown at the Bargain Boutique here on Bainbridge. This is an all donation and volunteer run thrift store where all proceeds go to SCH. It is really special to have Zoe be a part if this, we have so much respect for all that Seattle Children's does for families and patients and feel blessed each day to have Zoe with us.
Zoe had a great birthday party this year. She was muchmroe intrigued than last year. Having everyone gather around her and sing happy birthday was the definite highlight for her. Nothing more a leo loves than being the center af attention. And this year SHE ATE HER CAKE!!!!!!!
One of Zoe's Birthday Cakes
Opening presents
Talking on her "cell phone" - a favorite birthday present
At the fair with Nana
At Tee Lake
On a playdate with Mama and other friends
Zoe on the move in her new walker
Zoe feeding our new cat, Guiness. She is in LOVE with the cat!!