It’s hard to update here sometimes. Not because there isn’t an update to give, but because I really would really like to come here with some good news, some news that things are going great and that there is no need for me to update. Instead, I start to feel like I am updating the same stuff over and over. I am actually debating as to if I should continue this site at all. At this point I truly am not sure if this site is a burden or a true way to link people into where things are.
Anyway, update is as follows. Sadie saw her rheumatologist on the 25th of April. The good news is that her arthritis is only affecting her right ankle. There is no swelling in other joints. Obviously the bad news is that the ankle is really a source of issues again. So, her doctor put her back on a daily anti-inflammatory medication (one she took years and years ago) and suggested that we keep the Remicade at every four weeks in hopes that maybe her body just can’t stand the six week stretch. So, she goes back in for Remicade next Monday and then we will check in with her rheumatologist again two weeks after that to see how she is feeling in the “between” time. In addition we talked about other options such as doing Remicade every two weeks to give her body a jump start and discussed other medication options. The good of all that is there are other options… just a year ago, there were not… we were running short. I opted to try the every four week then visit in between rather then pushing to every two weeks… I just don’t’ want to overdue it. She did not do an x-ray or MRI of her ankle as Sadie is due to see the surgeon in June and she (rheumatologist) knows that the surgeon will want to look at that himself.
Sadie started the daily anti-inflammatory that night and within a week was starting to have some stomach aches. In addition she was complaining of sore ears and throat, but presented no fever, no change in appetite or attitude, so I figured a cold was on its way. Last Friday, she started throwing up and then complained that her throat was extremely sore; when I looked in her mouth with a flashlight and felt her lymph nodes, I knew she was sick! So, into the doc we went and on antibiotic she went; luckily she is all ready starting to feel better. The doctor did not think her throwing up was related, but he felt it was from the daily anti-inflammatory and he said “just take her off it for three-four days and see how she does” (in regards to her tummy); so we did and she seemed much better. With a call to Children’s we have switched the daily medication to one less agitating to the belly. Sadie has been complaining of some new pains; ones that shoot up from her ankle up into her leg. She recently even called from school (which is very rare) because she was having a hard time. So, finally after all these years, rather then just taking journal notes of bad days I have printed a blank calendar and started reporting how she is each day.
What is next: Remicade Monday and then to see the Rheumatologist June 2nd. Two weeks later on June 16th she will have Remicade (pending a good doc visit on the 2nd) and then she visits the surgeon (that will be a very long day!!).
Prayers that are needed right now are for the medication to work, for clear answers on her ankle, for patience and understanding as we are coming across a time of year where Sadie has to self limit her activity in order to keep her pain level in check, clarity for the doctors and praise for the fact we have great docs here. Also, protection from further illnesses; in our home this last six weeks it has been non-stop something, it would be nice to be done with all of it for now.
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