It has been a very long time since I have updated and for a few months that was because everything was good news. I will give a quick update of the last few months and then fill you all in on the latest:
In April (see last post) when her rheumatologist saw her Sadie was having issues with her neck, knees, right ankle, hips and chest (inflammation in her rib cage). After this time we started to see a different type of doctor on the side to see if there was any way his theory would work. He did not prescribe any drugs or manipulate Sadie’s body in anyway and the results of going to him were quite amazing. Sadie had a great May and June.
In June Sadie saw a doctor about a specific procedure that can be done in order to correct the leg differential that she has; the doctor did confirm that she is a candidate, but as I had hoped, he said then wasn’t the time (still praying that she catches up on her own). He will see her again in December.
In July she had a good few weeks, but started to have some issues with that right ankle again. We continued to see the other doctor and although the rest of her body was doing really well, the right ankle still continues to be the problem area. Sadie has done an amazing job in the last few years learning how to best manage her pain and pace her activity level. It is a hard reality for everyone to know that Sadie IS in pain and will have some level of pain all the time. However, she knows her base level pain and lately it was getting worse and she felt she had taken a huge step backward.
In late August, she went back to her rheumatologist who was happy to see that the neck, knees, hips and chest looked better, but her right ankle looked even worse than before. She talked about tons of options, some minor, some major, some not even ones I am willing to consider at this time. Ultimately she wanted Sadie to undergo another MRI to give us a very clear picture of what is going on. The issue with Sadie’s ankle is that… it is deformed, it just is; after years of inflammation there is damage done and her bones are not in the correct placement therefore it is really hard for anyone to determine if what they are seeing is “swelling” or normal tissue being pushed around by the deformity. We can gage it is swelling because at times it just looks worse and we can really gage things based on the fact that Sadie tells us just how much pain she is in. The best way though, to truly know all that is going on is with the MRI which will give us the most accurate picture.
Due to her remicade, we had to schedule the MRI towards the end of the cycle so that the remi was at its lowest to gage how bad the ankle really is. The MRI took place last Monday and yesterday I spoke with her doctor via phone. Basically, it’s not good. The arthritis is in a category of “severe” and it is “everywhere” within the joint (sometimes it is localized to one specific part of the joint). In addition there is additional damage done to her cartilage making the likelihood of bone on bone contact much greater. Obviously I was not surprised to hear there was active arthritis, but my heart still sinks to hear “more damage done” “looks dramatically worse from the last MRI” “Severe arthritis all over”. So, Sadie is now on the urgent list to be seen by the surgeon as her rheumatologist thinks a synovectomy needs to be done again. This is the same procedure that was done in November 2007. I questioned how close together the surgeries were and she advised that she felt the time between was adequate and that we really didn’t have many other options. So, we wait for that call. What I do know is that often the surgeon (who still follows Sadie and worked with us on the RND issues) often looks at the situation completely different than her rheumatologist. This is good and bad. The good is that he may offer a better solution. The bad is that sometimes that puts me in an odd position to make a choice based on what is presented and basically both side usually make good points. Another option I will present after seeing and hearing what the surgeon has to say is being seen by another rheumatologist. Fresh eyes just might be needed. I don’t’ doubt her doctor at all, but I think it might be time to see what someone else thinks Sadie’s options are.
On to some more exciting, fun news: JINGLE BELL 2009!!!
Please come support us by joining us for a fun filled event or by making a donation to our team. You can view the team page here: http://seattlejinglebellrun.kintera.org/sadiesstars or Sadie’s page here: http://seattlejinglebellrun.kintera.org/sadiejordan
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