The Waiting Game

So, I have been bad about blogging lately, as this has been a very busy and hectic beginning of the year for us. I just had to take Allorah to Chicago on the 10th of January for her appointment to see her amazing rheumatologist, Dr. Lauren Pachman and her just as wonderful staff. It was a very busy appointment day and these times take so much out of Allorah. Her day started out by being at Childrens Memorial Hospital by 9:15 for her appointment with Dr. P and staff. For the most part, her appointment went ok. Dr. P wants her to have surgery by the plastic surgeon to remove a 5x7 cm calcinosis on her left back hip area. She is wanting to add Cyclosporine to her regimen of medications since the calcinosis is forming again and this is the top treatment for that and I am not happy about that one bit. Its a very strong med and I just wish we didnt have to go this route. She had her regular visit with PT and OT and she has lost a bit of range of motion to her hamstrings. Its so hard to get her to do her stretches and she is so passive about it. I cant get her to take this serious and its frustrating at times. She just wants to be a "normal" kid. So we are sent to the lab for her bloodwork and by this time Allorah is not feeling well. She has a bad headache and her body aches. She get 20 vials of blood drawn and I am trying to hurry over to catch the shuttle to take us to the Clark St. building her her x-rays and DEXA scan, so I rush her out of the lab, we are about 10 steps out of the lab and she stops me and tells me that she doesnt feel well, just then her knees buckle and she just about passes out on me! I scoop her up and carry her back to the lab and sit her down and ask for some juice. It was too much blood drawn and she is weak. So we wait until she downs the juice and she feels better and there we take off for the rest of her tests. An x-ray of her right wrists to try and rule out arthritis and x-rays of her right hip to see exactly how big the calcinosis is there, then its off for a DEXA scan to see the bone density in her little body. By this time, she feels like total crap and we still have to go back to the Ronald McDonald house and clean out room, pick up our luggage, catch our cab and head back to the airport to catch our flight!! Needless to say, it was a mad dash and she passed out on the plane ride home!! So now is the waiting game of waiting to hear how her results are. I hate this part, its brutal. I will keep you posted!