The last three months have flown by so quickly. So much has
happened and Izzy remains fairly stable. This is not to say that
she is fine or improving, but she has not taken any large steps
backward. She is still able to go to school, play, and have fun.
For that, we are grateful.
The one thing we have been noticing is that Izzy is no longer eating very well. She just has no appetite. And one day this week, she got dinner too close to bedtime and was up vomiting all night long simply because her body is not digesting food very well. Unfortunately, this has not been her only episode of vomiting. It seems we may be heading back down the path we were on right before Izzy's last open heart surgery. And each step backward always scares us so because we don't know if this is just going to be a small step or a large. The hard part with a hidden disease like heart disease is that you can slowly deteriorate or just as easily be fine one day and gone the next. Knowing that either is a possibility makes every decision hard--do we try to get as much fun out of every minute or do we pace ourselves a little? We don't know, but we try to find the right balance: a day of fun, followed by a day of lazing around wearing oxygen. I will post pictures of what Izzy's been up to since that is the fun part of these updates. (They are in chronological order, so may be non-sequitur. Please forgive me.)
Near the end of May, we received a most unexpected and cherished gift. At the beginning of the school year, I had talked to Izzy's class about Izzy's heart and lung disease and how she cannot run like the other kids. Along with that, I sent home a letter to all of the parents in case the kids had questions. One of the kindergartener's grandmas, heard about Izzy through this and set out to do something wonderful for us. She worked with Izzy's teacher and had all of the kids draw pictures and take pictures of the kids, especially Izzy doing kindergarten things. She then took all of these wonderful, wonderful images and made them into an amazing quilt. It is filled with memories of a time that has been so happy for Izzy. I can't even write this post without crying because I love the quilt so. When Phin saw it, his first reaction was that we could use the quilt to remember Izzy when she is gone. He is so incredibly right. These pictures below do not do the quilt justice. You will have to come to our house to see it. We will be having it displayed. Thank you, Michelle, for touching our hearts and caring for a family you had never met.
More fun on the slide. It makes a very, very fast water slide!
Izzy had a recital for her special needs dance class. She was the star!
And I'm happy to report that Phin has moved beyond a lot of his anger and is now good with Izzy again most of the time. It was so hard to watch him push her away because he knows she is going to leave him, but he has worked even harder to come back to her. I'm so grateful for the hospice team and the kids' therapist who work with them constantly to make the most of their time together.
While Phinney was camping with the cub scouts, Izzy ended up at the beach (without swimsuits).
This is what Izzy decided summer is all about--eating fudgesicles on the front porch!
Then we had kindergarten picnic!
Izzy with her beloved teacher.
That night, something big happened in Izzy's life!
Yes, she lost her first tooth (well swallowed it with a piece of pizza)! Because she swallowed the tooth, she had to send a letter to the tooth fairy.
The note says: "Dear tooth fairy, I swallowed my tooth, so the note will be under my pillow."
And here is Izzy's first official self-portrait without the tooth (note she drew the tooth, then erased it!)
So, Izzy went to the last day of kindergarten without her tooth!
The last day of second grade! (I'm not sure how Phin got so old.)
The next morning, since Izzy was officially a first grader, she needed a change. This is before . . .
And after!
And finally, a picture from this weekend.
We have a full summer planned with lots of activities, especially fireworks. That was the one promise I made to Izzy--she would see fireworks this summer. She is in summer camp. She loves it, but it has already taken a toll on her physically. Izzy isn't scheduled to see the cardiologist again until the end of July.
The one thing we have been noticing is that Izzy is no longer eating very well. She just has no appetite. And one day this week, she got dinner too close to bedtime and was up vomiting all night long simply because her body is not digesting food very well. Unfortunately, this has not been her only episode of vomiting. It seems we may be heading back down the path we were on right before Izzy's last open heart surgery. And each step backward always scares us so because we don't know if this is just going to be a small step or a large. The hard part with a hidden disease like heart disease is that you can slowly deteriorate or just as easily be fine one day and gone the next. Knowing that either is a possibility makes every decision hard--do we try to get as much fun out of every minute or do we pace ourselves a little? We don't know, but we try to find the right balance: a day of fun, followed by a day of lazing around wearing oxygen. I will post pictures of what Izzy's been up to since that is the fun part of these updates. (They are in chronological order, so may be non-sequitur. Please forgive me.)
Dressed for opening day!
Lunch at Benihana (but it wasn't good for Izzy and I--no seasoning on gluten free food).
Our artiste!
When the snow finally melted, the kids were able to really enjoy the new playset and slide from The Jenna Kast Believe in Miracles Foundation! Thank you!
Here is Izzy before she saw her immunologist/pulmonologist. Dr. Doshi was very happy with her!
We've bounced (a lot) this spring.
We had the best Easter morning.
As we searched for eggs in the house, Phinney looked out the window to an amazing surprise! Thank you to whomever thought of our family :)
And Izzy got roller blades.
And she got to ride on the back of Daddy's bike! How many 6 year olds can do that?!? Those are the perks of not being able to gain weight!
The next weekend, we got dressed up for Izzy's cousin's first communion. Aren't my babies gorgeous!
Yes, Phin dressed himself.
On Mother's Day, we went to the park. This was Izzy's house for the animals.
For a couple of weeks, Izzy played with Phin's magic hat a ton. She was constantly stuffing it full of things to "magically" appear. This picture was taken then.
Then with the Daisies, Izzy got to have tea and treats at the Princess Tea Castle. Izzy declared she was the queen of course--not a princess.
Finally, Izzy needed a new bike since she had been riding on a trike still. She picked a pink Minnie Mouse bike!
Izzy with Elsa (her FAVORITE).
Lunch at Benihana (but it wasn't good for Izzy and I--no seasoning on gluten free food).
Our artiste!
When the snow finally melted, the kids were able to really enjoy the new playset and slide from The Jenna Kast Believe in Miracles Foundation! Thank you!
Here is Izzy before she saw her immunologist/pulmonologist. Dr. Doshi was very happy with her!
We've bounced (a lot) this spring.
We had the best Easter morning.
As we searched for eggs in the house, Phinney looked out the window to an amazing surprise! Thank you to whomever thought of our family :)
And Izzy got roller blades.
And she got to ride on the back of Daddy's bike! How many 6 year olds can do that?!? Those are the perks of not being able to gain weight!
The next weekend, we got dressed up for Izzy's cousin's first communion. Aren't my babies gorgeous!
Yes, Phin dressed himself.
On Mother's Day, we went to the park. This was Izzy's house for the animals.
For a couple of weeks, Izzy played with Phin's magic hat a ton. She was constantly stuffing it full of things to "magically" appear. This picture was taken then.
Then with the Daisies, Izzy got to have tea and treats at the Princess Tea Castle. Izzy declared she was the queen of course--not a princess.
Finally, Izzy needed a new bike since she had been riding on a trike still. She picked a pink Minnie Mouse bike!
Izzy with Elsa (her FAVORITE).
Near the end of May, we received a most unexpected and cherished gift. At the beginning of the school year, I had talked to Izzy's class about Izzy's heart and lung disease and how she cannot run like the other kids. Along with that, I sent home a letter to all of the parents in case the kids had questions. One of the kindergartener's grandmas, heard about Izzy through this and set out to do something wonderful for us. She worked with Izzy's teacher and had all of the kids draw pictures and take pictures of the kids, especially Izzy doing kindergarten things. She then took all of these wonderful, wonderful images and made them into an amazing quilt. It is filled with memories of a time that has been so happy for Izzy. I can't even write this post without crying because I love the quilt so. When Phin saw it, his first reaction was that we could use the quilt to remember Izzy when she is gone. He is so incredibly right. These pictures below do not do the quilt justice. You will have to come to our house to see it. We will be having it displayed. Thank you, Michelle, for touching our hearts and caring for a family you had never met.
More fun on the slide. It makes a very, very fast water slide!
Izzy had a recital for her special needs dance class. She was the star!
And I'm happy to report that Phin has moved beyond a lot of his anger and is now good with Izzy again most of the time. It was so hard to watch him push her away because he knows she is going to leave him, but he has worked even harder to come back to her. I'm so grateful for the hospice team and the kids' therapist who work with them constantly to make the most of their time together.
While Phinney was camping with the cub scouts, Izzy ended up at the beach (without swimsuits).
This is what Izzy decided summer is all about--eating fudgesicles on the front porch!
Then we had kindergarten picnic!
Izzy with her beloved teacher.
That night, something big happened in Izzy's life!
Yes, she lost her first tooth (well swallowed it with a piece of pizza)! Because she swallowed the tooth, she had to send a letter to the tooth fairy.
The note says: "Dear tooth fairy, I swallowed my tooth, so the note will be under my pillow."
And here is Izzy's first official self-portrait without the tooth (note she drew the tooth, then erased it!)
So, Izzy went to the last day of kindergarten without her tooth!
The last day of second grade! (I'm not sure how Phin got so old.)
The next morning, since Izzy was officially a first grader, she needed a change. This is before . . .
And after!
And finally, a picture from this weekend.
We have a full summer planned with lots of activities, especially fireworks. That was the one promise I made to Izzy--she would see fireworks this summer. She is in summer camp. She loves it, but it has already taken a toll on her physically. Izzy isn't scheduled to see the cardiologist again until the end of July.
In the meantime, we've started fundraising for the 4th Annual
Michigan Congenital Heart Walk in support of the Michigan Chapter
of the Children's Heart Foundation and the Adult Congenital Heart
Association. This year, Team Izzy is trying something different for
fundraising. We are still accepting donations at this link (and
walkers): Team Izzy. But we also started Izzy's Ice
Cream Challenge! As you know if you've followed us for any length
of time, ice cream is Izzy's absolute favorite! For the challenge,
we ask that when you eat ice cream (or any other frozen treat this
summer), think of Izzy and pop a dime, a quarter, a dollar, ten
dollars in a jar. At the end of the summer, send the money in the
jar to me to donate to Team Izzy for the Heart Walk. For every $20
you donate, I will send you a bracelet that says: "I ate ice cream
for Izzy! Funding CHD research!" If you're local, you don't have to
mail your money. We will be holding an ice cream social at our
house on September 13, 2014, to end the event! If you are
interested in taking Izzy's Ice Cream Challenge, simply print one
of the pictures below (one is made by Izzy for the event and one by
me) and tape it to an empty jug or jar, and fill that with coins or
bills each time you eat a frozen treat. Feel free to email me for
more information at akarunaway@yahoo.com.
Thank you for checking in on our girl. We appreciate the support.
Mel
Thank you for checking in on our girl. We appreciate the support.
Mel
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by Melody Vandee
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