This has been a busy week. I have spent the majority of it home with Kara, in my arms. I'm waiting for her poor little body to get back to baseline and just when I think she's getting there, something else happens.
I brought Kara back to the doctor on Thursday. Her temp went down but she was still so cranky, having icky diapers and her bottom (once again!!!) is raw. That trip was a waste of time, not to mention the $25.00 co-pay. We had to see a different doctor, as our doctor was completely booked for the day. I had faith that he would listen to us and do something to try and help us but I left there feeling extremely discouraged. He had NO CLUE what I was trying to tell him and the only advice I left with was "try Desitin." REALLY? DESITIN? She has a PRESCRIPTION for her bottom because it gets to bad. I use EVERYTHING on it. What about this awful tummy ache? What about labs drawn to see if everything is ok, check levels that might give us an answer as to how bad the inflammation is? (For the record, his answer to that was "I can run those labs but if they come back out of whack I wouldn't know what to do for it, anyway so we'll just let GI do what they want on Wednesday.") IN MY OPINION (but I'm no doctor so maybe I'm off!) RUN the labs anyway, we see GI on Wednesday and then we can be one step ahead when we get there. No such luck. He did look at the letter from our last GI visit and said "it says here her RAST and the scratch test showed no allergy to rice, oat, soy, and just a minimal reaction to dairy." I explained that all her FPIES reactions aren't IgE and he still didn't seem to get it. When he brought up her FPILES (that's right, PILES) I gave up. I did call and our nurse and let her know what happened once we got home. In the meantime we are trying to manage until Wednesday. Her doctor can see her on Tuesday if needed.
Yesterday Kara finally started to be feeling a little better but her squealing, screaming and screeching continues. She is not happy to please and in the meantime we are creating a monster. This afternoon we couldn't please her no matter what we did. She was finally content, and when we discovered what she was in to, we decided to just let her be because she was happy, our house was quiet. She pulled all of the DVDs off the shelf, one by one. There must be 100 of them, in a pile on the floor. She had a blast. What do you do in situations like that??
Yesterday we had some friends over. Brenna forgot the rules and brought her sippy upstairs with juice in it. Kara went up to see what the big kids were doing, found Brenna's sippy and sucked it down. It was white grape juice. She's had grapes before and prior to the pear fail I would have been pretty sure they would be safe but since then, what's safe?? She's so crabby but has been, she has icky diapers, but has been, so who knows. Then this morning i discovered her walking across the room eating one of those pink/white coated animal crackers with sprinkles on them. Brenna talked me into buying them at the grocery store and must have put some in a baggie yesterday when her friends were over. Kara got a hold of that baggie, and thought it was gold! I didn't even look at the ingredients. I know she ate one of them, I couldn't get to her in time, and I'm sure they contain milk, soy and who knows what else. I'm worried at what's to come as the day goes on because of the extreme crabbiness today has already brought.
In the meantime, I have gotten two get aways the last two nights and they are healing! Thursday night we had a fire department auxiliary meeting and a few of the girls went out afterwards. It felt so good to be away but we talked about Kara quite a bit. It's funny how we deal with this every day and don't think of it's general difficulty a lot anymore, it's become a (frustrating) way of life. Talking about her and answering questions about her really got me thinking and emotional about how much this sucks. It's tough but it's a way of life. There's no other way for her/for us. In order to figure out what she can and can't tolerate, we need to go through these challenges and unfortunately, deal with FPIES reactions if it's something she can't handle. Last night, I was able to get out and have appetizers, a margarita and go to a movie with a long time girlfriend. We haven't hung out one on one in a long time and it was so nice to get away again! Shannon, next time it needs to be longer, or lets even make it a weekend! :) Brian gets his getaways but I have a hard time leaving Kara too often so it really felt good. Tonight I may make it a 3rd night and get out on a date with my hubby if Kara isn't too fussy. I think some Grandma and Grandpa time is definitely the cure for that fussiness if she's ok otherwise! :)