Manageable?

Izzy is done with 4th grade! She even went to school for a couple hours each day during the last week. It was exhausting and took a lot out of her, but she persisted. Memories were created and smiles were shared.

Last day of school, standing next to her flower garden. She needed the garden to do her part to save the bees.

Today was the third day of summer vacation. Izzy's pain is mostly controlled by the extended release morphine. She does have breakthrough pain, but even that is usually controlled fairly quickly. Izzy has been able to eat more (not great; not like a typical child of her size), but she is getting some caloric intake. That has lead to her having a little more energy. She's not able to play for extended time and her summer is not going to be filled with the activities most kids enjoy, but she is way better than she had been even a couple of weeks ago.

"Incredibles 2" over the weekend.

Izzy made a cake yesterday!

Izzy and Phin went for a neighborhood walk today!

We have had issues with ear infections. She has second one for the month (different ear). This infection is a staph infection. The lab results are being sent to the immunologist and ENT. Hoping that the treatment we have will be adequate and that this is not simply of sign of what we should be expecting. I would hate to think we'll end up back on course after course of antibiotics like we were before Izzy started immunoglobulin infusions in December 2011. Thankfully, this infection did not knock Izzy down like the last one did.

We had an incident that put me over the edge, when Izzy was experiencing the classic outward signs of a heart attack--pain radiating down her left arm, squeezing pain in the chest, dizzy, clamy to the touch, ashen in color. Freaked me out completely. Seriously, it was a week and a half ago and she is clearly fine as she can be, and I am still emotional over it. Thankfully, with morphine (and later rest) she went back to being simply Izzy.

Izzy's swelling is continuing to increase/progress (I'm not really sure the correct word here). Her legs are now fairly blue from the veins popping out. Her belly, which has always swelled, tends to get bigger and bigger these days. That's probably why she doesn't have room for food. She can't even eat all of her ice cream.

A new, yet consistently present symptom is dizziness. Izzy is frequently dizzy these days. There are times she even feels like she will fall over from it.

Overall, we are taking each moment as it comes and continue to try and put smiles on Izzy's face. Those of  you who have sent pictures, cards, letters, stickers, and more have truly been a blessing to Izzy. The first thing she does each day is ask about the mail. I know we have not returned letters or sent proper thank you notes to anyone. I apologize. We would like to properly acknowledge your thoughtfulness, but I have no energy left. It does not mean we are ungrateful. We are beyond grateful. Thank you so much for thinking of her. Those of you who have sent letters to Phin, thank you as well! Phin feels forgotten much of the time and the warm hello from afar truly brightens his day as much as it does for Izzy.

I have had people ask me for the link to sign up for playdates with Izzy. I am reluctant to share it again. The original idea was to keep Izzy connected to the outside world while stuck at home and do so in a way that was manageable by me with work, taking care of Izzy (and Phin and our home), along with dealing with massive levels of stress. Juggling tons of emails to set individual playdates was not workable for me. Unfortunately, the sign up form is just as bad if not worse than dozens of emails and worst of all, it has made the summer worse for Izzy than it would have been if I had done nothing. I don't even know any longer. I am too exhausted to be a cruise director, but also desperately want Izzy to feel less alone. I'm not sure that is possible since I don't know any other kids to invite over who are experiencing the same thing, but I wanted to try. Instead, I made everything worse.

After all of that, I will continue to try. If you are willing to have a playdate with Izzy, you can sign up here: https://www.signupgenius.com/go/30e084ea5ac22aafa7-playdates. Those are the days Izzy is available. The time-frames are too long for Izzy to hangout as she gets very tired, but simply let us know approximately when you expect to arrive. I send out reminders the week before (although some of them have not gone through). I will not be letting Izzy know you are coming in advance. I can't hurt her by getting her expectations up, especially for the times when Phin is out of town (i.e., next week). I do, however, need to plan doctor's appointments, hospice visits, and wake Izzy up on time. Please, please confirm with us if you will be coming and let me know in advance if you cannot. You can always email me directly to set a visit at meloniestothers@gmail.com.

Thank you for checking in on our girl.

Mel