Kara was diagnosed with food protein induced enterocolitis syndrome (FPIES) in August of 2010. She has had many FPIES reactions and complications that have lead to numerous hospitalizations and specialist appointments. It was a huge sigh of relief to finally have some answers and a diagnosis, however we have to remind ourselves daily that this is a very serious disease and this is only the beginning of the long road we have in front of us.

Thursday, June 16, 2011


Today is day 6 post tonsillectomy. It's been an awful last 6 days with today finally (maybe?) looking up. A lot has happened and I'm going to try and blog about it in parts, as it is just way too much information to put down all at once, especially since I've barely had any time on the computer in the last week and my mind is not working the greatest due to pure exhaustion.

Today I GOT A SHOWER. Without a screaming Kara outside the curtain! I snuck into the bathroom while she was playing nicely with the dollhouse that I brought out to the living room yesterday in hopes of a distraction from all the pain! This was huge! This week I've been feeling similar to the way I felt when I was home with a newborn baby, only this one is 20+ pounds of baby who screams when she's put down and has been in excruciating pain.

Today I LEFT THE HOUSE! I hadn't been out of the house since Sunday, with the exception of a car ride to the ER yesterday (which I ended up turning around and going home). Kara seemed pretty content today so I was on the phone with my mom and we decided to go for a drive  and go visit her at work. She works at a resort so we got there and went for a walk along the shore, saw the water, boats, kids (BOY! As she says!) and a few chipmunks. We carried her off and on as she gets tired out really fast. We went back up to my mom's office and Kara got a good drink of water and started fading really fast so we left. It was a perfect outing, nice scenery and just long enough.

Today I GOT LUNCH! I don't know what I've been doing for eating lately - I seem to have no appetite which is just fine with me, I certainly have weight to lose, but it seems our days have been spent in the rocking chair, snuggling on the couch, or in my bed trying to keep Kara content, if I'm not coaxing her to please drink something! We got home and she was insistent on noodles so I started boiling some vegetable broth for some difference in flavor. Kara ate a few noodles, played with a few more and threw some on the floor. She also had a few bites of a jar of apple/blueberry baby food. Baby steps here...this allowed me to put a pizza in and actually have some lunch. It doesn't matter that I ate my lunch while blogging this, I should have said "I GOT LUNCH AND GOT TO BLOG!" :)

Today IS MUCH BETTER THAN YESTERDAY, and all the days prior, but I'm reminding myself it's only 2:30 in the afternoon. When I talked to the ENT nurse yesterday I was reminded that days 7-10 are actually the worst, as the scabs on the throat start to heal. I think we just might get a one day break before this healing painful time happens!

There are two things that stick in my head from our hospital stay.
One is the wonderful resident's words as she was discharging us: "Ten days from now you guys are going to be so happy you did this."
The other is the ENT's answer when I asked how her tonsils looked: "They looked like they needed to come out. Most importantly, we had the sleep study done to prove that they needed to come out."
I needed this for my own piece of mind, I explained to him. I felt better knowing that they actually looked bad as well, so that made me feel like we did the right thing putting her through this surgery, as risky as it was for her.

It's going to be rough but will all be worth it. I'm beginning to see the light at the end of this long, dark tunnel.

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