It's Summer

Izzy finished third grade. It's amazing to think about. She is 9. When she was a baby and so very sick, 9 was an age I never felt she would reach. She made it!

First and Last Days of 3rd and 5th Grades

Overall, today, Izzy is doing pretty well for Izzy. She remains in heart failure. She still takes 25+ doses of medication a day. She wears oxygen all day everyday. She hardly eats. Seriously, maybe one meal a day. She gets very sad that her belly won't let her eat, but we tell her it is okay. Car rides suck. We're not really sure how much they suck because Izzy won't tell us out of fear that she will go even fewer places than she already goes, but we can tell many times. Over five minutes in the car (even with zofran, valium, and morphine onboard) and she's feeling bad. But, she's good for Izzy.

Two months ago, I couldn't have said that. But, as of the last week of school, Izzy has perked up.

We've started tackling the demons that reside inside of Izzy more. She is opening up. With that, she is not having as many nightmares, sleeping better, and overall feeling better. The best tool found was Billy and Zac the Cat meditation stories for kids. Since she started listening to these stories at night, she falls asleep and stays asleep much better. She is still waking us up at least once a night to go to her room, but it's not every hour all night long. We still have a long way to go as Izzy is very, very reluctant to talk about her scary and hard feelings, but they are coming out more and more each day. I think this is what has helped her the most along with the help of the counselors she speaks with.

Now, if we can get her to stop fearing 4th grade, that would be amazing. She is petrified about 4th grade. Thankfully, we have a couple of months to work on that.

I guess the biggest hurdle for this month is Izzy's hearing. Rather, her lack of hearing. The damage done to Izzy's ear drums from the many infections through the years has taken a toll and at her last appointment three Thursdays ago, the ENT indicated that her hearing had worsened by 5 decibels since her last appointment a couple of months before that. We knew there were problems. It has been frustrating for us and for Izzy. She simply cannot hear. In the classroom it is worse. There was point during the school year, where she was placed in the back and she heard nothing for most of the time she was there (had I known of this at the time, I would not have been as surprised at her coming home so frequently).

Izzy recently asked Dale and I if she would be stuck not able to hear for the rest of her life. We told her to ask her ENT. She didn't ask him, but Izzy is still being measured for hearing aids. Thankfully, we finished reading "Wonder" a couple weeks ago and Izzy knows that it might be scary to think about wearing hearing aids, but that they can change your life for the better.

Over the last three weeks Izzy has flip flopped several times about her feelings on the hearing aids. Some moments she is petrified of being even more different. Other times, she's just excited to finally be able to hear.

You won't be surprised to learn that Izzy chose pink hearing aids. The molds will be back in two weeks, but Izzy wants them now! I'm not sure if it's excitement or trying to get the bad over with. Izzy's motto typically is to start with the bad and get it done quickly. I guess we'll see!

Izzy does see her cardiologist on Monday. I'm not expecting any new information. I'll update if there is anything new or different.

As always, during the summer, we hold Izzy's Ice Cream Challenge, where we ask people to take the pledge to think of Izzy and all of the kids (and adults) who were born with CHD each time you eat ice cream. Then donate a quarter, a dollar, ten dollars for each frozen treat. Keep a jar in your kitchen or keep a tally (ice cream stickers are a fun way to track). Izzy's Ice Cream Challenge officially runs this year from Saturday, May 27 through Saturday, August 5, 2017. For every $25 donated to fund CHD research through the Ice Cream Challenge, you will receive a special thank you note from Izzy and a bracelet that says "I ate ice cream for Izzy. Funding congenital heart defect research."

On August 5, 2017, we will be holding this year's Izzy's Ice Cream Social, where you can eat ice cream with Izzy. Buy your tickets or make a donation for Izzy's Ice Cream Challenge here: http://weblink.donorperfect.com/izzysicecreamsocial.

 

If you'd like this year's shirt, those will be able available for purchase until July 19 at this link:   There are five days left for you to buy a shirt and let the world know that you eat ice cream for Izzy! And you are supporting congenital heart defect research :)

Get your t-shirts, hoodies, long sleeved shirts, and women's cut here: https://www.customink.com/fundraising/ice_cream_for_izzy. We will wear these at this year's Congenital Heart Walk too. If you need your shirt shipped to you, I will have to do so myself, so please include a $6 "extra donation" to cover shipping costs for your shirt and email me your address at meloniestothers (at) gmail (dot) com.

Thanks for checking in on our girl. I'll end with a smattering of pics from the last couple of months.

I love this photo bomb!

22q at the Zoo!

Phineas was promoted from elementary school!

New shoes! The first pair of new shoes in almost two years.

Vacation!

We hope you all have a wonderful summer.


Mel