Monday, September 15, 2014

"Something Is Just Not Right!" -- on the road to some answers

For some reason, I've always loved the book, "Madeline"  (by Ludwig Bemelman). Remember when Miss Clavel woke with a fright and said "Something is just not right!"?  Some people have intuition like that.  I sometimes do!  (My husband recently said he needs to learn to trust that intuition, because in many instances, my intuition is right!")

For weeks (maybe months) now, Anna has been saying, "Something is not right!" with her vision in her left eye.  She has mentioned this to the ophthalmologist on several occasions (we've been seeing him at least every two weeks since January) and has explained to him in detail how her vision is different out of her left eye.  He has listened well, and tried a few things (thinking that maybe she had some near-sightedness going on there---but that didn't pan out).  I remember that in the spring, he also dilated her eyes again to make sure he wasn't missing anything.  But all along, her inflammation had been hovering around a 1+, and she had clumps of white cells sticking to her cornea.  So he attributed her issues to those factors.

So many people (including many of you!) have been praying for Anna.  THANK YOU!  Our pastor has been recently praying for her doctors---for creativity to help them figure out how to help Anna.   I've been so thankful for her doctors and the care they give Anna and their wisdom and intelligence that I believe God has blessed them with.  Today we had another appointment with the ophthalmologist.  I was expecting another routine appointment---check the level of inflammation, chat a little about the upcoming trip to the specialist in Boston so that we're all on the same page and so that I have all the background information I need (summary of care) to hand to Dr. Foster in October, etc.  Anna's visual test on that left eye was not the best (not too much different from other appointments).  So the doctor went ahead with the slit lamp examination and found that the right eye is totally clear (as it has been), and the left eye inflammation is down to "trace cells."  With no clumps of white cells sticking to the cornea.  That was the good news.  The bad news was that her vision STILL was not right (and he was thinking that it should be with the "trace cells.")  It should have improved, anyway.  So now the doctor is thinking, "Something is JUST not right."  

He dilated Anna's eyes and examined them more thoroughly.  He was beginning to suspect that she has Macular Edema (swelling of the back part of the eye).  He sent us over to the medical center to get an OCT to confirm his diagnosis.  The photographer explained the images to Anna and me (we were asking a lot of questions---the differences between the right eye and the left eye were blatant---I could see it as soon as he moved the camera from one eye to the next.  He did give us a disclaimer about him being only a photographer and not a doctor---but he's been doing this for 20 years and has a good understanding of the images on the screen). 
right eye (what the doctor sees when he
looks at the back of Anna's eye, and a
cross section.  (This is the normal eye.)
This is the left eye---this is what swelling
in the back of the eye looks like.

Our reactions to the images have been interesting.  For Anna and I, I think we were feeling validated that yes, something is different.  For Scott (my husband), his reaction to the images tonight was one of compassionate dismay.  Both responses are appropriate, I think.  I'm so sorry that this is happening, but so relieved that we finally know what's going on.  Sometimes I have fleeting thoughts of "Why didn't we figure this out sooner?"  But I'm reminded that God's timing has been perfect in the past, and it continues to be perfect in the present.

It was such a long day (so much more time spent in Hershey today than we anticipated), and we just wanted to get home (and in time for Anna's bassoon lessons, and for her to touch base with a few teachers about what she had missed in school today).  I don't exactly know where we go from here (except another appointment with the ophthalmologist on October 1st, and the appointment in Boston on October 10th).  But I am relieved that finally it's more than Anna and me that is saying, "Something is not right!"  (Something besides the inflammation.)

Tuesday, September 02, 2014

Taking More Steps . . . . .

If you read my blog regularly, you know I usually have songs running through my head all the time!  I figure it's the soundtrack of my life.  The songs for this part of Anna's JA Journey are the same as some in the past.  Focusing on Steven Curtis Chapman; specifically his "Take Another Step" song that I've quoted before:  "Take another step, and another step, when the road ahead is long, and you don't know what to do---take another step . . ."

My conversations with the Lord are constant, but last week, my conversations with Jesus were more frequent and fervent.  Anna was seeing both of her doctors within two days of each other, and we had already resolved with the ophthalmologist that if there was no significant change in Anna's left eye by this week, we should make plans to see a uveitis specialist.  Anna had shared with me (at length as we drove home from an appointment two weeks ago) her concerns about the vision issues in her left eye.  The ophthalmologist had already explained his conclusions for why she's having the vision issues (she described them in detail to him at one appointment).  His thinking is that once the inflammation goes away and she no longer needs the dilating drop, her vision should clear up again.  I think Anna is getting tired of waiting for that to happen, and two weeks ago, the inflammation had decreased (at the appointment on Friday, it went back up to 1+), but her vision had not improved.  More frequent and fervent talks with Jesus (on my part, and I think on Anna's part, as well.)

So this week has been a turning point week---when we decide which steps to take in our journey.  Over the past few weeks, we were presented with two different options for a specialist to see.  My talks with Jesus involved entreaties for wisdom!  I once heard that to intentionally follow God's will often means doing the next wise thing (when He doesn't send down an e-mail from heaven, as I often long for Him to do!).  So while Anna was receiving her Remicade infusion on Friday afternoon, I began to make phone calls.  The wisest choice seemed to be the specialist in Philadelphia.  (The trip would be shorter, and cheaper, and the specialist is nationally known, and recommended by the pediatric rheumatologist.  We're familiar with the Wills Eye Institute, since my mom was treated there for ocular melanoma years ago.)

What seemed to be the wisest choice ended up being a closed door.  (I like closed doors sometimes---then it's easier to turn away and go to the other open door, instead of agonizing over the choice between the two.)  To get an appointment with the doctor in Philly meant a six-month wait (unless the doctor deemed otherwise, but he's away for two weeks).   Six months?!?!  Anna has had chronic uveitis (usually at 1+ inflammation or more) for the past 8+ months.  I don't want to wait another six months for some answers.  So I called Dr. Foster's office in Boston.  They could have made an appointment for September, but we decided on October instead, since Anna has a few days off school in the middle of the month.

Since we have to be on this journey, at least we can have
some adventures along the way.  I like Boston!  Anna doesn't remember our visit there in the summer of 2001---she was too young.  So she is eager to go again (and pinning some tips and places on Pinterest!)  I like to fly---and we're choosing to fly up and use public transportation (which we like to do in big cities.)

There's an older song that often flits through my head at various times.  I can't remember the artist, but it says, "For such a time as this, I am placed upon the earth, to hear the voice of God and do His will . . . "  I have no idea why we are on this journey or why we now need to go to Boston to see a specialist.  But I DO know that Jesus loves us beyond measure, and that He makes all things work together for good (maybe not right this minute, but eventually---God's time is not our time.  His ways are not our ways, His thoughts are not our thoughts---but He LOVES us).  So whatever the purpose--whatever the plan, we continue to take another step, and another step . . .