Update

Another year has ended and we are grateful to be where we are.

The fall was difficult. Izzy was not doing well. Everything felt different and scarier. But, by Thanksgiving, Izzy seemingly found her way back up to a new normal that wasn't filled with pain and she was enjoying life again for the most part. The holidays were relaxing and filled with love. That is all we can ask for.

Izzy writes and edits her books right on her phone

Izzy continues to be basically bed-bound, with some excursions here and there. She is an extremely prolific writer. Writing does wear her out and sometimes cause pain, but it has given her a purpose and an outlet for her anxiety over the future (most of her books are what happens when she leaves this life).

Thankfully, with Covid-19 vaccines and boosters, Izzy has been able to have more visitors than in 2020. That has also made quite a difference. 

Overall, we continue down the same path of uncertainty. When I started writing this post about a month ago, we were happy that Izzy had woken with a smile, was writing the third and fourth books in her then current series, was engaging with friends, and looking forward to a visit from her cousins. As of now, Izzy finished that series of stories and is now working on others. She's actually had in-person visits with friends, has a weekly date with one of her cousins that she loves, and is very excited that her younger cousins are visiting very soon.

Unfortunately, pain is no longer as controlled. While there are days where Izzy eats okay for an Izzy, she has lost weight. She's lost so much weight that her compression socks fall down now. That means her legs are in pain more often. Izzy doesn't drink enough, so that adds to the pain.

Weight loss has also led to the loss of another of the places to insert Hizentra (immunoglobulin infusion). We're down to three spots left and it causes more pain these days due to less fat. We're thinking of removing that layer of protection. It scares us, but Izzy's comfort is the most important consideration in our decisions these days. We hope her relative isolation will keep the infections (that she'll be extra susceptible to without Hizentra) away. 

In the mean time, we savor our moments and love on our girl.

Mel