Pain & Anxiety

Apparently, I'm not very good at documenting moments these days. It is hard. Most of the time, we are all exhausted. Izzy is in pain a lot. She is sad. She is angry. It takes a ton of work to keep our family from drowning. When we do have our good moments, we relish them, hold on tight, and don't waste time to document. I know I may be sad without documentation to remember these moments later, but those feelings will live on even if I can't remember the witty conversations and inside jokes.

I wish I could tell you that third grade has been good for Izzy, but it has not. She has not been able to go to school much. Today was her first day in in a week. She was there 2 hours and calling me to pick her up. Such is life these days. If she's not in pain, she's exhausted.

Izzy has been fighting an ear infection since early September as well. After four 10-day courses of oral antibiotics and ear drops, it was determined that the infection was fungal in nature (although I'm not sure about that because the antibiotics killed the infection in between, so there is probably two going on). The fungal infection is being addressed now (5th round of medication) and we hope it will go away for good. One lesson learned though is every single infection must be treated as serious for Izzy. Because she receives immunoglobulin transfusions weekly, her immunologist specifically told us (and is telling all of her other docs) that they must treat any infection Izzy gets as a zebra and not a horse. That is particularly scary for us as rare illnesses are typically harder to treat. (For those who do not know, med students/doctors in training are taught that when they hear hoof beats, they should think of horses and not zebras. In other words, doctors should assume infections are caused by everyday, normal bacteria and not exotic crazy strains. But, for Izzy, we have to think zebra.)

Izzy has accepted her oxygen for the most part. We are not militant about her use of it. We let her play without it and be a kid for short periods of time. Then she knows to put it back on. She definitely needs it. She was running around, being a goofy kid this afternoon without it. I kept asking her to put it on. She finally did and sat down long enough for her nurse to take vitals. With 2L of oxygen on, Izzy's oxygen saturation was 92 with a heart rate of 107. She was recovering from her running, so this is not the norm, but not abnormal either.

Izzy still does not eat much. Yesterday was a very hard day and Izzy ate all of one bite size nacho in the morning for the entire day. She drank water and took her meds, but one bite size nacho. That is the not the only day she ate nothing. We have some days where she eats well, but most days not. Today, she ate well--a couple of bites of pasta with sauce and cheese for breakfast, and a lunch of three chicken nuggets, 1/4 cup of peas, about 6 steak fries, lots of BBQ sauce, and the top chocolate frosting off half a donut. Needless to say, she is not gaining any weight back.

Izzy insists that she wants to eat, but is in too much pain. But even when the pain is under control, she still doesn't eat. She can't. We try to not press her too much, while still attempting to help her keep moving.

By far though, our biggest challenge is anxiety. It is controlling everything that Izzy does and feels. It can cause her debilitating pain as well. The more school she misses because of pain, the more anxious she becomes. The more she is left out of life, the harder it is for her to try to poke her toe back in. Thankfully, we have been working on her medications to try and help her. We may be getting to a point that will allow her to worry a little less and enjoy life a little more. We really hope so because it is exhausting for all of us to live like this. All we want to do is help her out of the pain and most times, our attempt to help makes things worse (or at least it seems that way).

Beyond the day-to-day, we have had big moments. Izzy got to cross another item off of her bucket list: riding a horse!

Of course, there was the Congenital Heart Walk. Team Izzy raised over $5000 and the Walk itself raised over $110,000. We are so grateful for all of the support from our friends and family.

Izzy attended a sock hop!

 Izzy helped Phin get ready for 5th grade camp (that's her wearing his Syracuse slippers).

Phin went to camp!

 We celebrated Dale's birthday.

We finished reading "Harry Potter and the Philosopher's Stone", watched the movie, and are almost done reading "Harry Potter and the Chamber of Secrets". We're hoping to get to that movie this weekend. Izzy is loving the books.

Izzy played with Goldy.

The kids are very much looking forward to Halloween, Thanksgiving, and Christmas. Izzy has her list started and is fighting for what she wants (she wants a pink smart tv in her bedroom).

Thanks for checking on our girl.

Mel