We didn't get to see the owner, Mitch this time but Allorah spotted her thank you card on the wall that we sent a couple months ago. As always, the food and service was amazing. Check them out if your ever in the Lincoln Park area. You won't be disappointed.
Her day started out yesterday at 10:00 AM with a DEXA scan at the outpatient center. Dr. Pachman orders one every 6 months to follow her osteopenia which is due to the 10+ years of Prednisone therapy.
That medication keeps the inflammation down in her body but at the same time does so much damage to so many areas all over. She has developed a cataract, osteopenia, enlarged liver, diabetes and quite a few other issues, so it's like a double edged sword. In the last year we have been able to decrease this med because of the diabetes and it has helped tremendously. We are praying for a complete discontinue of this and we are getting so close. She has gone from 12 mg. and is now at 3 mg.! That is great news! We took the shuttle from the outpatient center to the hospital for her appointment with Dr. P and all the wonderful members of her team.
As you can tell, shes not the most patient person. Hmmmm, i wonder where she gets that from? She saw PT and OT and all my worrying was put to rest because her CMAS score went from 47 to 48! That may not sound like a big deal but to a parent of a JDM kiddo that is truly a big deal. Her strength and range of motion improved. Here she is with her Physical therapist during her evaluation.
Dr. Pachman and her partner came in next and she was so thrilled at how well she looked. Her skin has become less pigmented, the purple rash on her eyelidsp that is so characteristic of this disease is disappearing and becoming less noticeable and she has grown taller and gained some weight which is good news. She gave us further instructions to continue lowering her Prednisone by 1 mg. each month unless she has any "flare" symptoms. So keep praying for her in hopes of getting to see remission.
Labs were drawn and x rays were taken of her shoulder, hips and femurs to check for increased calcinosis and we should have all these results plus her bone scan result back in 10 days. So our fingers are crossed for good news.
After we left the hospital, we grabbed some grub at Chipotles and of course we couldn't miss a trip to Swirlz Cupcakes for some ooey gooey goodness. We did some window shopping and we figured since Allorah got poked and prodded that a new pair of TOMS were in order.
I swear she's a hippy! She tried to convince us that she needed these hideous moon boots...
Uhhhhh, I think not! I just want to thank my amazing husband for being there for us on this trip. This was a horrible week for him as he was getting over some health issues himself (I will explain in my next post) but he gathered all his strength and joined us to be my rock and support during these appointments that leave Allorah and I emotionally drained.
He holds my hand, wipes my tears, whispers words of encouragement and tells me that I'm doing a good job, he does those things for Allorah so effortlessly as well just as he would if she was his own daughter. I have been blessed with someone who countless times takes my breath away. I love you babes, thank you!
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What a blessing you have. This is the first time I have seen or heard you this happy. I pray he honors you and you honor him the rest of your lives. Love you guys lots!!!!
ReplyDeleteThank you Tia. It was good news for sure. Its always so hard because with this disease its always been one step forward and two steps back. You become so frustrated and lost in despair that it gets hard to see the silver lining. So getting this news is so uplifting. Love you guys!!
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