Friday, September 27, 2013

Fall Findings

     ‘T was another long day for us.

     Up early for an appointment at 10 in Calgary. After a bumpy start ( everybody was slow getting up, a warning light in my vehicle told me my tires were low on air, my car needed to be filled up with gas, coffee was needed and the boyfriend who came along for moral support needed to be picked up) we still made it in time.

     10 am – girl child appointment with the rheumatologist. 10 am - boy child appointment with OT. 11 am – boy child appointment with rheumatologist. 11 am – girl child to the lab for blood work. Noon: time for a quick snack.  12.30pm- boy child going for x-rays and girl child needed to reschedule an appointment for an MRI. A visit with PT was also booked but because of all the running around we forgot all about that….ooops. A short visit to the mall and around 3 pm we were on the road again. A bumpy ride again; an accident on the highway turned a 2 hour trip into an almost 3 hour trip. But the important part is we made it home safe and sound so all is good.

     Findings….I now have to concentrate on two different visits so I have to stay focused and make sure I don’t mix up my kids!

     The girl child was a bit worried the last couple of weeks, her knee was bugging her and seemed a bit swollen. She was worried she was headed back to square one again; however, the doc was not overly concerned at this point. That was a huge relief for all involved! She had some blood work done and the doc took a throat swap to rule out strep throat.  No changes in medication for the moment so my girl is a happy camper! An appointment for an MRI for both of her hands was made for October 21 but that is the date that is scheduled for her ophthalmology appointment so we had to reschedule that. It will be November now, here’s to hoping the snow stays away until Christmas (who am I kidding….?!).

     The boy child was a bit more complicated this time around. We had not seen any changes in his joints; the doc agreed and even found some more worrisome joints that she wanted investigated. She also decided that it was time for him to start a biological drug as well. We kind of saw that coming so it was not the biggest surprise, but still a reality check. The whole circus has to start again: screening for TB to rule out future problems. Not overly excited about that because it brings back memories about the time my girl had to be screened and later had to be treated for TB. That was a big obstacle on our path but it lays behind us now. Besides, what are the odds of both of them having to deal with that….( but then again, what are the odds of both of them having arthritis…oh well, we shall see!) So: chest X-rays were done, his hips were x-rayed ( doc found they were stiff)and we now have to set up an appointment for a Mantoux-test. Also communication with our insurance company needs to take place to see what and if they will cover when it comes to treatment. This is just a formality because we know exactly they won’t cover what the doc wants to prescribe him, but the documents need to be in place so we can hopefully qualify for the compassionate program the pharmaceutical company provides. The hopes are we can start Humira with my son as well. The doc wants him to use an auto injector because his hands may not be able to handle a syringe for long….this makes me sad, but hopefully we caught it in time and can prevent more damage by treating him aggressively. He will need a medical alert bracelet / necklace now as well, flu shots are recommended and no more live vaccines.  Occupational therapist provided him with some pencil grips because his fingers hurt when he has to write a lot and we discussed the potential use of splints in the future. Hopefully we won’t need them. Overall a lot of information to digest again.  Ophthalmologist appointment soon, his first one, I hope his eyes are clean.

sad we still have to worry about this
     While waiting for X-rays, I saw this posted on the counter. It frustrates me; if you have good reasons to not immunize your children, I hope you think twice and I hope you realize by choosing not to immunize you can put others in harm’s way. If my kids with their compromised immune systems were to contract the measles it can kill them so please people, weigh the pros and cons and realize your decision can impact a lot of lives. Down here in Canada we should not have to worry about a measles outbreak in Holland but apparently it is a concern.

     Fall is upon us and it is beautiful. It’s not such a pretty time for kids with JA it seems, there are a lot kiddos struggling at the moment. My thoughts are with them and I hope winter is not too hard on them.

beautiful fall

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