March 18, 2008

It's been a long time since I updated, so I thought now is a good time since we are fresh from dealing with Children's yesterday. Sadie has been doing amazing! So amazing that we have been busier then ever living life: going to the park, playing at family/friends, zoo time, even grocery shopping has become "normal" (I would try and schedule shopping when I knew Sadie could stay home or was at school because walking from one end of the store to the other was too much). We have been busy living life and not thinking much of arthritis. Sadie was able to participate in the AWANA games (church activity); she has been invited to participate for a few years, but this year was the first year she has been healthy enough to accept. It was great to watch her be able to play and she had a great time and a huge appreciation for being there.
In the last few weeks Sadie has had some ups and downs, minor in comparison to the past, but she has been feeling pain occassionally. One thing we have noticed is that when we are out and about she will start to fall behind and she will start walking on the outside of her foot. This is one of our first indicators that she is in pain and for someone who has been dealing with this since shortly after learning to walk, she has a physical ability to make changes to her walk and pase well before she "feels" the pain. In addition there have been a few times she has sought to ice her ankle and/or has shared that she is hurting a bit. All pain has been pretty exclusive to the right ankle again, although she does get sore in her hips (probably from her adjusting the way she walks to alleviate pain).

She has continued to do physical therapy once a week at Maplewood and yesterday we saw the physical therapist at Children's. She measured her range of motion and watched her gait and agrees that she is rolling to the outside of her foot. She also felt that there was present swelling in both her right and left ankle in addition to both feeling warm to the touch. She suggested that we discuss with rheumatology the issue of the medication being stretched from 4 weeks to 6 weeks and that maybe we need to move back to the previous schedule. She advised she would contact the doctor with her findings.

After therapy Sadie had her infusion; she did amazing with both pokes (first vain collapsed) and had a great attitude the entire day (sometimes the medications make her so tired, that she can get really grumpy, understandably). She is scheduled to go back to see Dr. W (her rheumy) on the 26th of April along with being scheduled for her next infusion. I will wait to see if Dr. W contacts us regarding the PT findings or not to see if that changes.

PT also suggested really watching our schedule on outings and helping Sadie to limit her activities a bit if needed since she is correcting her walk when in pain this could cause further damage in other ways.

All and all she is still way improved over the time prior to surgery and way improved over this time last year, we are very grateful for that and also hopeful that she will continue to do as well has she has this last few months.