In the Eye of the Storm . . . . ([God] remains in control . . . )

OCT (picture of the back of Anna's eye in layman's terms) of Anna's left eye this past Wednesday

Well, it's not as bad as it was in 2014, but the Macular Edema has returned in Anna's left eye.  At least this time, we are already established with a Retina Specialist who has a calm but decisive manner and who seems to know exactly what she's doing.  She increased Anna's Pred Forte eye drops and doesn't want to taper until this is under control.  For our next appointment with her in June (four weeks), we have allowed 3-4 hours, just in case the retina specialist (Dr. N.) feels it necessary to do a Periocular steroid injection to stay ahead of the Macular Edema.  (I'm learning new words, and although I did an Internet search to know how to spell it, I'm not quite ready to look at the images.)  I used to not even want to think about an injection into the eye of one of my children, but at this point, I am okay with putting Anna in the hands of this specialist.

This news comes in the middle of a storm of activities and emotions, as Anna prepares to graduate from high school next week and move toward her future as an adult.  There are a wide variety of emotions for us as parents (Anna being our third and last child to leave the nest.) And while we're busy, we're also eagerly anticipating all three of our children being together again next week, and seeing our daughter and son-in-law and grandson who live 12 hours away from us.  We're also constantly thinking of a very dear friend of ours, who seems like family, who is not long for this world, having battled an aggressive cancer for the past 2 1/2 years (and grieving for her family). The Lord is speaking to me again through songs and Scriptures, as He often does in the tougher seasons of life.  On our way home from Hershey on Wednesday, as we were thinking about and praying for our friend and her family and letting the news from the appointment sink in to our minds, the song in the video below was playing on the radio.  I was thinking how appropriate these words are. This song has been playing in my head for the past few days.

In the eye of the storm
You remain in control
In the middle of the war, You guard my soul
You alone are the anchor when the sails are torn
Your love surrounds me in the eye of the storm.

(if you decide to listen to video, listen through to the end---they go A Capella, and it's awesome if you love music and are into that sort of thing--I am!)

Fix Our Eyes . . . . .

"Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles. And let us run with perseverance the race marked out for us, fixing our eyes on Jesus, the pioneer and perfecter of faith. For the joy set before him he endured the cross, scorning its shame, and sat down at the right hand of the throne of God. Consider him who endured such opposition from sinners, so that you will not grow weary and lose heart."  Hebrews 12:1-3 NIV

I've been hearing and seeing "Fix Your Eyes . . . ." quite a bit lately---in studying, in songs, in worship services, etc.  I know what it means---we need to focus on Jesus.  Know who He is, and how much He loves us, and remember all of that whenever we are in the midst of the hard things in life.  As I was gathering my thoughts to update this blog, I realized that "Fix Your Eyes" is a great title for this post---not only for the spiritual meaning, but because Anna's eye (that left one) needs "fixed."  

Anna's left eye, this past Monday, was at a 2+ flare again.  Two weeks ago it was down to trace cells.  Sigh.  Last time we had a flare like this (a month ago), her vision was still 20/20 in that eye.  This time, the inflammation was affecting her vision in the left eye---mostly blurry.  (We are SO thankful that the right eye remains clear of inflammation!) So we increased the number of daily Pred Forte eye drops, and increased her Remicade dose from 12 mg/kg to 15 mg/kg.  There's still room to increase the Remicade again if we absolutely have to.  It worked out on Monday that Anna was able to get the increased dose that afternoon.  She had already been scheduled for an infusion, and her appointment with the ophthalmologist was two hours before the infusion.  A flurry of phone calls and confirming with the infusion room nurse took care of everything. 

We go to see the retina specialist next week, and Anna will need an OCT (picture of the back of the inside of the eye) to see if the macular edema has returned.  All of this in the midst of finishing up projects and studying for the final exams of high school, and "senior meetings" leading up to high school graduation.  We do our best to run this race with perseverance--fixing our eyes on Jesus and the joy that is to come.

One thing I wanted to share with all of you . . . . you hear my thoughts in every blog post, but you don't always hear Anna's perspective (her source of strength and her faith).  I was designing her graduation announcements this evening, and there's a place for some text on the back of the card.  I asked Anna what she wanted there, and she gave me a verse from the Bible.  This is Anna's perspective on her life and journey:

My health may fail, and my spirit may grow weak, but God remains the strength of my heart; he is mine forever.  Psalm 73:26 (NLT)

It's that Eye Again . . . . Getting used to Bumps in the Road

In a dream world, as we prepare for Anna to graduate from high school and move on to college and her adult life, we could hope and pray that we could set aside Juvenile Arthritis and Uveitis in the same way we are preparing to put her childhood in the past.  But we don't live in a dream world, as reality reminds us.  Two weeks ago and five days following Anna's last Remicade infusion, the pediatric ophthalmologist looked into Anna's left eye with the slit lamp and surprisingly found 2+ inflammation.  And he said that he could tell by the exam that this wasn't a one-day flare; those cells had been present for probably at least a week.  So we increased the Pred Forte drops to four times a day and went back for another eye exam a week later.  Thankfully, one week of increased drops was enough to calm down the inflammation to just trace cells.  We were able to decrease the drops again.  Pressures were on the verge of being high (21 for both eyes), but the decrease in Pred Forte should help bring those back down.

We've also adjusted Anna's Remicade schedule.  We had been stretching out the infusions to every five weeks, but I called and rescheduled the next two infusions so that she will receive the infusions every four weeks, as initially prescribed.  

Anna has just a few more weeks left in her high school experience.  As we count down the days, we also have many, many events on the calendar (as you can see on the picture to the right, which is my actual calendar for May!---concerts, appointments, prom, family gatherings, etc.  Sometimes these bumps in the journey (unexpected eye inflammation) can cause some fear, but I plan to be very intentional in the next few weeks to exhale and enjoy the present!  Turning away from fear because our lives are in the hands of Jesus, who gifts us with each new day.