Ugh....

    Well, I guess we should start with the good news!

    My daughter’s friend has found her missing sister. We are so happy she is found safe and sound.

    My daughter had her IV again last Friday. The doc was happy with how she was doing so lowered the dose. Hopefully she will do well on this lower dose. If she does do well, the next dose can probably be done orally so NO MORE IV’s….potentially, keeping my fingers crossed.

    Last week my girl was supposed to get her training from a nurse to start Humira. The nurse had to cancel due to bad road conditions, so we rescheduled for today. I was a bit apprehensive about it since she has now been without a biologic for a week and a half.

    Nurse showed up and prepped my girl.

    Unfortunately it did not go well; she had an allergic reaction. The nurse told me later it was almost an anaphylactic shock. She was dizzy, lost her vision, her throat tightened and her chest felt tight. She was as white as a rag and had cold sweats, all of this with the needle still dangling in her leg. Luckily she never really lost consciousness, but it was close and pretty scary.

    As you can imagine; she’s quite shaken up by this all (and so is her mom). It also means that we will not be using this drug again, so, once again we are looking in to other alternatives.

Another day in the life of…..

    Really ready for a solution right about now!