Yesterday we had another Children’s day. First we had new blood work done as her labs from the previous week came out with a bad liver function read. The good news, the labs came back normal.
Unfortunately the visit with the Rheumatologist did not go wonderfully and I left there not only feeling as confused and concerned as I did when we walked in, but even more so. That said I will just give the short of the long. Sadie’s still very much in active flare mode… both ankles, right hip, shoulders (new), neck, jaw are all involved right now. Her neck and shoulders are probably the worst in respects to how Sadie is feeling; her neck is bothering her quite a bit. Her doctor has suggested, implemented, that we double her current Remicade dosage and keep this at every 4 weeks. In addition they will be doing a “pulse” of large quantity prednisone (steroid) right before each Remicade. What this will do is help alleviate some of Sadie’s discomfort until we can hopefully get the new dosage of Remicade working. I talked pretty candidly about my concerns that this flare up is now on month 14 and that we have been just rolling with the punches, but we are all wearing very low right now. She assured me that she has other tricks in her bag and to just continue to pray that the Remicade will start doing the job. On another issue a little over a week ago Sadie showed me that part of her thumb nail was coming off. It looks very much like she slammed it in a door or something like that, but without the dis-coloration. I thought it was strange, but was pretty sure she must have hurt it and not realized it. Then two days later her middle finger, same hand, was doing the same thing. Add a few more days to that and we added a third finger. Sadie’s rheumatologist was not concerned about the nails, but did say she had never seen such a thing. I on the other hand am very concerned about this and wasn’t so comfortable with the wait it out theory we were given. Of course prior to going to the doctor, I had used the wonderful tool Google to see what I could find on the nail issue and none of what I found sounded very good.
From there we went to PT where Sadie was given a new routine of exercises to do at home most working on her shoulders and neck.
I was not at ease after this appointment (there are several details to the situation I am choosing to leave out), so I called her regular pediatrician, Dr. Upton. She was very helpful and we had a mini-consultation about things going on with Sadie. She is doing some homework on finding a dermatologist to take a look at those nails.
Sadie starts school in one week. The start of school in active flare is always a time of concern for me. Sadie has to put forth a lot more effort during the day and doesn’t have the option to always “opt out” of activities like she does during summer. I ask that you pray for Sadie right now in a big way; pray that the Lord holds her strong with the upcoming schedule changes and upcoming medication changes. Pray that the Lord guards her from pain and shields her from side effects of the new dosing of medications and pray that the Lord hears our cries for her to find the medication needed to get this under control. I have often had to go back to this verse in times like this:
Do not be anxious about anything, but in everything, by prayer and petition, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. – Phil 4:6
One last little note: Sadie and I were “purging” her room last night and when we were going through thousands of scattered pieces of paper in her desk I came across this nicely folded group of papers in a very odd location (not w/ all the “junk”). When I opened it up it was her online guestbook that I print for her. She said she kept it in the special spot, so please know that Sadie does enjoy your comments on the website. Sometimes I only print them every other Remicade, so she may not see them right away, but she does see them!
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