Autumn Update

I'm not sure where to begin with this post. The last time I updated, we were still trying to get Izzy's pain controlled after months and months of uncontrolled pain, angry Izzy, and tons of weeping. It did happen. We got Izzy's pain controlled for the most part in September. Her light and happiness returned. She wasn't sleeping as much. She was able to do and think more. It was like our Izzy was returned to us. For a couple weeks, all was better. Not wonderful; but better.

While Izzy hasn't returned to where she was in the summer, she's not where she was a month or so ago either. Unlike the summer, where Izzy could only concentrate on preschool books or poetry, we're able to read age appropriate chapter books again, but she is sleeping more (she's napping now). We've had to deal with more breakthrough pain (She was in a lot of pain before her nap).

Leg pains were the hurdle for a while, but Izzy's hospice nurse found compression sleeves that fit Izzy's teeny legs and that has helped a little with the leg pain. However, if Izzy stays out of her bed for too long and her legs are not elevated, then the pain inevitably comes. If she is lucky enough to swing in the yard, eat dinner at the table, or stand to help taste test, her legs end up hurting. Yesterday, we started decorating the Christmas tree and that led to crazy leg pains and misery. 

As you can imagine, Izzy grieves the loss of activity. Couple her body's decline with the seclusion of the pandemic and sadness is still a large part of life. But in true Izzy fashion, there are a lot of smiles too.

Izzy has been able to work word searches and dot to dots. She's been writing stories and listening to many as well. She's even enjoyed visiting foreign lands through travel tv programs. 

Izzy has had more ear infections. Unfortunately, her ENT feels she needs a tube in her right ear again. This may be the 7th time if I remember correctly. She has fluid behind the ear drum that won't go away. And the drum is retracting. Problem is that we don't know if Izzy can get the procedure or should. The hospital where the doc performs procedures and is close to our home doesn't have anesthesiologists qualified to work with Izzy's complexities. The hospital with the anesthesia team experienced with complex cases like Izzy is over an hour drive and would be with a different doc. Izzy still has huge problems riding in cars and has been vomiting fairly regularly sitting in bed, so driving an hour seems almost unthinkable. Putting her under anesthesia as a hospital not equipped to care for her will not happen. What to do? We don't know. We're waiting to hear back from the ENT to determine the plan. In the mean time, Izzy has another ear infection. Queue lots of swear words.

Izzy is excited for the holidays, but sad that we won't get to see our extended family due to the pandemic. We hope all of you are well and staying safe. I'll end with some pics from the last couple months. I do apologize. The pictures posted in reverse chronological order, but I don't have the time nor energy to pick them all over again, so please forgive me.

This is today, while watching Great British Bake Off. It got her to eat, but caused severe tummy pain. 

Crepes!

Halloween loot! Izzy had the best Halloween ever this year even without traditional trick-or-treating and zoom meetings.

Izzy was a magical adventurer for Halloween.

Izzy was lucky enough to be flower girl at the wedding of Queen Anna and Kristoff. The surprise wedding was held in our backyard.

Magical ingredients for the Halloween costume. 

Making a teddy bear with Ma. His name is Jinx.

First day of school--9th and 7th grades. Izzy is homebound and Phineas virtual.

Thanks for checking in on our girl.

Mel