Summer

It's hard to believe I last posted at the end of spring, before school was out, and summer is now coming to an end. School begins on Tuesday. Time has certainly flown. We have had good moments, but much of this summer has been spent dealing with Izzy's pain.

I re-read my last post before writing. I talked of Izzy's 3-5 hour long naps. That was a symptom of uncontrolled pain. We didn't know. Now that we are moving toward Izzy's pain being better controlled, I can see the difference. Izzy is still napping daily, but not nearly as long. She is not as angry all of the time as she had been in the spring and a lot of the summer. 

Izzy has always had extreme emotions, but this summer has been another thing all together. A lot of it has to do with pain. Izzy's entire life has been filled with pain, so much so she doesn't realize she's in it. She'll wake in the mornings and I can see the pain she is suffering on her face and she simply tells me she feels meh. Many days, she she wakes feeling meh, within an hour she'd be in agony. Once the pain took control, it was so hard to get back to a normal that was manageable.

Izzy's hospice nurse could tell Izzy's pain was out of control because Izzy was only angry with her. We spent the start of the summer increasing oral extended release pain meds. That wasn't helping as it should though because Izzy was waking in pain in day (and we had to wake her at 10:30pm and 7:30 am to give her the medications every day). So at the end of July or early August, we switched to a continuously releasing fentanyl patch--a sticker that gets changed every 3 days that allows the pain medicine to continuously release through the skin. 

Talk about the week from hell. The original dosage was too low, but Izzy hates taking morphine, so she wouldn't tell us she was in pain until it was too late. She was in agony. She couldn't sleep from the pain. She was hitting herself, screaming, and writhing in pain. There was no relief. The hospice team was there for us and helped us getting her to a better place, but that week . . . We were sleepless, all on edge, and she was in misery. 

Thankfully, we are getting to a better place. The patch is helping to control the pain and we are figuring out how to get it to stay attached to her skin (it kept falling off). We no longer have to wake Izzy each night and morning to give her medication. That is wonderful for all of us. Izzy still has breakthrough pain, but is not nearly as angry as she was in the spring and early summer.

Izzy is very emotional these days. There has been a lot of weeping this summer. Many times, the weeping is for no reason. Izzy will be weeping one second and then the laughing the next. It is very difficult to manage. Couple the pain and emotions with the pandemic and we are all exhausted. 

We have had good moments. We hold onto them so tight. I will end on that light. 

Izzy and Ma decided to Anthony Bear needed a crown so he could be King Anthony Bear. This was his coronation day.

A picnic while she waited for a visit from princesses.

Swimming at Aunt Courtney and Uncle Greg's house!

Izzy dreamed up Igoaway the Ickabog and I made him for her.

King Anthony Bear's new crown that holds up better to being slept in.

One of the amazing cards Izzy received from Cardz for Kids.

Izzy was visiting with her beloved, Elena.

Izzy has spent this summer watching the 1990s "Sabrina the Teenage Witch" and this is Izzy's Salem.

The princesses have made Izzy's summer amazing. Thank you, Crowns Against Cancer.

Izzy spent her allowance on this fantastic mermaid costume.

Blue and silver hair, just like Luna in "The Girl Who Drank the Moon".

Izzy envisioned this dress and through the magic of Amazon, mommy, and Ma's sewing, the dress came to life!

Phineas had a birthday and got Occulus Quest. Izzy loves VR!

A visit from Tiana and Moana, complete with fireflies and a lily pad flower.

Izzy has had the doll on the left since she was a newborn. She got it in the hospital from a family friend, Bonnie, and that is why the doll is named Bonnie. Izzy decided this summer that Bonnie needed a little sister, so Ma made Mia to Izzy's exacting requirements.

Thank you for checking in on our girl. We hope you all are staying safe.

Mel