Friday, January 24, 2014

2014 May Be An Adventure!

I have a feeling that this new year will be one where we gather up our courage, hold firm to our "Anchor for the soul," and continue to plod along on this JA journey.  Since we have to go through this at all, I'm praying that at least some of you will be encouraged or informed because of our journey.  At the very least, I pray that we can be an encouragement to hold on to HOPE, seek peace, and know that you are not alone. 

Anna's first appointment for the new year was last week -- with Rusty (Dr. Long--he prefers to be called Rusty) at the Lancaster Cleft Palate Clinic, where she had bands put on her molars.  Next step in this process will be to have her wisdom teeth removed, as well as her four "first molars."  We meet with a local oral surgeon in mid-February---that's the earliest I could get.  We need to wait, anyway, for those teeth to be removed, until after the County Band Festival (next weekend) and District Band Festival (the following weekend).  She'll have brackets put on in mid-February, with jaw-reconstruction surgery in sight for spring or summer of 2015.  We continue to feel an overwhelming peace about this process and this team---which is really good, since we're traveling almost an hour for orthodontic work, when we have a multitude of orthodontists who are closer (but they don't work as an on-sight team like Rusty does with the other doctors/specialists associated with the Lancaster Cleft Palate Clinic!).

In other news . . . . sometimes I "hear" God speaking in many ways, and the other day, I happened to see Psalm 112:7 on Pinterest, and it grabbed my attention.  "They do not fear bad news; they constantly trust the Lord to care for them."  While I've learned not to put too much stock in premonitions nor to worry about things that may or may not happen, I thought about this verse a lot this past week, realizing that I spent many years (maybe even decades?) being fearful of bad news.  I want to be different---I NEED to be different if I truly claim to have a relationship with my Creator and trust His love and care for me and my family.  I want to live in such a way that I live my faith, and not just speak the words.  So if I choose to do that, I need to choose to trust the Lord, even when some days seem to bring one bit of bad news after another.

How grateful I am that the Lord had given me this verse for the past week.  Yesterday was an interesting day---from trying to tie up a lot of loose ends at work before taking next week off, and getting a phone call to tell me that some pre-admission labs for me were rather worrisome to the surgeon's office and could I please come in to have more labs done to make sure I could move forward with surgery---and having a small window of time to take care of that before picking Anna up to take her to Hershey for an eye appointment.  (Thank the Lord there was so much going on that I really didn't have much time to think and worry that day---besides watching the clock and thinking about and praying that I could get my work done and then get to the outpatient lab in one town and back to the high school in our hometown in time to get Anna and get to Hershey in time for the appointment---all of that worked out perfectly!)

We arrived in Hershey in such good time that we were able to stop by the lab and take care of labs for Anna (standing order for labs every 2 months) before heading to the ophthalmologist.  Anna had mentioned some concerns about her vision in her left eye a few weeks ago.  I wasn't alarmed, because she's never had any symptoms of uveitis, so I was thinking that maybe she had some sort of reaction to the Pred Forte eye drops.  But long story short, her left eye has had an unexpected and significant flare in just the past few weeks (we saw the ophthalmologist just five weeks ago, and she had one or two cells at that time---now she has at least 200 white cells).  So now she has symptoms (that can be a good thing . . . .).  The plan (discussed via phone between the ophthalmologist and the rheumatologist with Anna and I in the room to answer any questions) is to increase Humira, switch from oral Methotrexate to injectible Methotrexate, and increase the Pred Forte drops to four times a day for a week---we go back to check on things next Thursday.

It's still possible to find some good things instead of focusing on the bad.  Since Anna was telling me (right before yesterday's appointment) about her continued symptoms, and her research on-line to figure our her symptoms, I was mentally prepared for a not-so-great appointment.  Poor Dr. M. had challenges with his last four patients (Anna made patient #5 who required an unanticipated more detailed exam and figuring out a plan of action)---so he was running behind schedule.  Which meant I had more time to skim through magazines and pray and settle my mind and remind myself to TRUST and not worry.

This also becomes a challenge (as a mom) as Anna gets older---when she was first diagnosed, it was me who had to work through all of my feelings.  But she's now a teenager and has definite feelings of her own.  So how is she handling this?  I'll post that next.  (She told me that I could copy and paste her Facebook status from yesterday on my blog). 

1 comment:

Denise said...

Hi, I am another JA mom (friends with Amanda Goss). My daughter's are 16 and 18. They both have extensive jaw involvement. Kendelle has micrognathia, major damage, constant pain, and needs a cpap machine at night. She also needs the reconstructive surgery and double joint replacement. I wish your daughter the best in all this. I would love to connect.