Falling Down

Three weeks ago, I asked for help. Three weeks ago, I described the darkness that enveloped us as we fall farther. Three weeks ago was so much a better than where we find ourselves now. We were exhausted then, but are ever so much more now. I had no idea how exhausted one could get.

We have been dealing with new issues. Izzy was having lots and lots of chest pains. We had to up her dosage of morphine by quite a bit. She went from 6mg three times a day to 7.5mg every four hours. Some days, she needs the morphine every two hours. Thankfully, after about a week and upping the morphine, we got ahead of the pain and that is controlled again for the most part.

Izzy is also more tired than before. She is so, so tired. She gets worn out with the smallest of activity. With that, she gets more sad and angry. She knows she is missing out on so much. Her body is just not letting her enjoy as much as she wants.

She's not eating again. She can't. She lost two pounds in the last couple weeks. She didn't have that much to lose. She is now back down to 45 pounds. She's showing signs of more swelling and veins are popping out on her head and legs that we didn't see before. Her eyes are circled in black.

Even with exhaustion, our girl smiles and loves to pose for pictures for me.

Between the pain and the exhaustion, Izzy hasn't been making it to school much. When she does go, it is only for a couple hours. She misses school. She misses her classmates, teachers, aid, and everyone in the building. We are not as much as fun. When she is home, she reads, watches tv, or plays her tablet.She'd really like people to play games with her or even watch a movie with her or read to her. After the positive response from our last post, I set up a calendar in which people can sign up to spend time with Izzy. If you'd like to help us this summer and spend a couple hours with Izzy (and perhaps Phin when he is around), please sign up: https://www.signupgenius.com/go/30e084ea5ac22aafa7-playdates. I can't promise Izzy will have energy. She likely won't have much, but she loves visitors and we want to keep her connected to the world.

I know several people have offered to be pen pals with Izzy. She loves getting things in the mail. She will try to send a letter back if you write her, but that takes a lot of energy right now that she just doesn't have. She uses what she has on school work that remains undone. She will try, but we can't make promises. If you are interested in sending her a letter (without necessarily a return correspondence) she would love it (as would Phin). Email me at meloniestothers@gmail.com and I will send the address.

Thank you for caring for our girl,

Melonie

PS
Izzy would really, really love to see local people at Izzy's Ice Cream Social & Family Fun Day on Saturday, June 2, 2018 from 1:00-3:30 pm at Grant Park in Utica.

For $10/person (advance tickets--$15 at the door), you get to make your own fancy (or simple should you choose) ice cream sundae, play games, and win prizes all to support congenital heart defect research. Please join us! You can buy your tickets here or donate to Izzy's Ice Cream Challenge here: https://interland3.donorperfect.net/weblink/weblink.aspx?name=E12419&id=300. Remember for every $30 donated to Izzy's Ice Cream Challenge, you receive a purple/lime green cloth bracelet that says: "I ate ice cream for Izzy. Funding CHD research 2018."