Wednesday, August 8, 2012

Roller coaster ride...(+ update)

Daddy & Lucianna - July 17th


Hi everyone,

It's been a while since I have written a post but we have been hoping to share some more good news.  Unfortunately, Lucianna has not progressed like we had hoped.  Although her last appointment was super encouraging, we haven't seen the results we expected in the weeks to follow.  Since that appointment she has only had a handful of times where she has walked.  More recently, she has been unable to put weight on her legs, making bathing and dressing her quite challenging, and she has been complaining of her left hand hurting and unable to use it.

We emailed her rheumatologist explaining her condition.  He responded that he wants x-rays today if possible or tomorrow at the latest of her left hand and wrist, bilateral pelvis, both knees and both ankles.  After he reviews the radiology reports, he will advise us on next steps.  He is going to be away for two weeks starting Friday, so I am hoping we receive some guidance before he leaves.  If the radiology report isn't ready by then, we will work with his colleague who is another Pediatric Rheumatologist at Hopkins.  At this point, we want to get Lucianna's pain and symptoms under control.  We miss seeing her walk...

Please keep her in your thoughts.  I will update you as soon as we know where we will go next.

Lucianna's Mama


UPDATE FOR JULY 8th and 9th:

Hi everyone,

The girls and I got the x-ray done last night, 8/8 at 8:30pm at the hospital. Despite my fears of taking two young kids to a hospital by myself at 8pm at night, the girls both did great! Bella was a great helper and entertained her sister and Lucianna was a very good patient!  (Although, I did have to promise a surprise there.)

The report came back and everything was NORMAL!  HOORAY!  ....BUT WHAT NOW? 

We still don't understand why her symptoms aren't matching the doctors findings.  It's so puzzling and frustrating!  How can so many things be normal but she's not walking.  Again the doctor believes that we should continue with Naproxen, and follow up with some moist heat packs.  I asked him if physical therapy may help her to gain the strength back and keep the joints mobile, he agreed, and wrote her a script for that as well.  We should receive it in the mail in the next few days.  He also wants to have her lab work run again to see if there are any significant changes since June 28th when it was checked last.  We spoke with our pediatrician who suggested a course of steroids, but our rheumatologist does not agree with that at this time.  Our pediatrician also says that in order to fully diagnose JRA/JIA and it's subgroup (pauciarticular or polyarticular), it could take over 6 months so that the doctor can see "patterns" in her symptoms. 

So once again...we still have very encouraging news, and are just waiting to see progress out of our little jelly bean queen.  While it's very hard to be patient, we are still very hopeful that she'll start improving very soon and pray that despite her reluctance to walk/stand it still may be muscle atrophy/weakness.  Fingers are crossed! :)    PS:  She walked some today after Daddy did some time in the hot tub.  It was so wonderful seeing her walk.  Today was a good day! 

(A treat from the radiology department - they LOVED getting these!)
<In this photo they are actually in the complete dark.>

Thanks for all the well wishes!
Lucianna's proud Mama

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