Tuesday, November 22, 2011


    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!

Saturday, November 12, 2011

November News

    Wow, time flies! We are in November now and today I woke up to our first day of snow. There has been a white day before this one; however we were in sunny Mexico so we missed out on that!

     Overall my girl has been doing quite well. She has been playing volleyball hard and she was able to play most games. The last few weeks she has had to sit out some and also had to stay home for a day or two since her energy was gone.

    A lot has happened since my last post. First of all, my girl got approved for Humira, using their compassionate program. We are going to start November 17. Hoping this will be the one for her! She had another IV treatment done; we are almost ready for the next one, next week! The Doc told us her joints are looking the best they have in a long time so that’s exciting! She is wearing contacts now and she looks GORGEOUS! So far she is tolerating them well and only once did she sleep with them so far!

     School is going well and both her and my son are having a great year. In social studies they were learning about the Canadian government and for their final project they made a rap about it, it’s pretty cool, they posted it on YOUTUBE, check it out! http://www.youtube.com/watch?v=qxKcHF-Zv4s

    With Volleyball they made it to the CWAJHAA (what stands for Central & West Alberta junior high Athletic Association…..I think!) so we have a few more exciting weeks coming up!

    We just came back from our little get-a-way; we went to sunny warm Mexico. It was relaxing, rejuvenating and definitely planning on doing that again! Mazatlan is where we went; the Emerald bay, pearl of Mexico, and beautiful it was. Enjoyed a beautiful catamaran trip to an island, where we had a fantastic lunch and had the best fish I ever ate, horseback riding (sort of!) and an exhilarating “Bananaboat” ride! Went zip lining, an experience that was both unforgettably beautiful and an adrenaline rush! We rode a Mexican limo and visited a tequila distillery. Swimming in the ocean, finding seashells on the beach, lying under a palm tree looking at the coconuts, enjoying the food and the good natured people….yup, life is pretty good! And then you come home and the next day there is that fluffy white stuff on the ground; reality check!
                                               View from my deck chair!

               The reason these rock formations are white is bird poop....honestly!

    My girl took her last (ever?) Enbrel shot in Mexico. Next week she will be trained for Humira. I’m expecting it to be similar to the enbrel shots, we shall see! Added bonus for her is that this one only has to be administered once every 2 weeks instead of twice a week. Flu shot coming up and IV too. Hopefully after this one we can start weaning her? She’s currently on 5mg of oral prednisone, with a bit of luck we can be done it by the end of this year, and then, fingers crossed, getting rid of the IV’s.

    On a concerning note, we found out while we were in Mexico that a former student of our school has gone missing.  My daughter is close friends with this young girl’s sister and we are very concerned about her well being. I will post a link, please check it out, hopefully someone will recognize her.

    Please keep your eyes open for our friend.