Friday, September 14, 2012

Her follow up eye appt was today...

This is one of my favorite pictures of her taken last Christmas...


Let me start with the good news:  Her eyes are responding to the steroid drops, (there are kids with Uveitis who simply do not respond to any therapies/meds). This is the first big hurdle - and incredibly great news.   That said, she is NOT, by any stretch, "recovered" or out of the woods. 

The not-so-great news:  She has a severe case of Uveitis, which is shocking considering she was just checked two months ago and wasn't supposed to go back for a re-check until late October.  Thank goodness she had some symptoms.  Uveitis is typically a silent, symptom-free and painless disease.  You don't always know about it until it's too late.  Severe cases are more difficult to get under control and have more serious implications when it comes to vision complications.  Therefore, she will be undergoing treatment for the next SEVERAL months.  That's right, several months.  Currently, she needs hourly drops during her awake times and a nightly drop, which she hates, because it burns.  This disease is not convenient by any means.  To have to stop everything you are doing, every hour, is quite annoying....but necessary.  The drops are milky white, not a pretty thing to see coming from her eyes, but Lucianna handles it like a trooper!  Her teachers at her school rave at how amazing she is at taking the drops.  Her teachers have been amazing at dealing with this rigorous medicine schedule.  We are so lucky to have them.

The eye drops are a steroid - steroid drops cannot be given long-term because they can cause cataracts and glaucoma.  Yes, you read that right....we have to give her a medicine to keep her from eye damage and vision loss that could cause her -eye damage and vision loss.  Makes no sense, but it's our only option and we have to treat her and hope that she does well with the steroid.  Long term:  she will have to have routine eye appointments for the rest of her life to make sure this condition stays in check.  This condition doesn't just go away, (I wish it were that simple).

To end on good news:  her ophthalmologist does not think she has suffered any damage in these two short months - so we just need to focus on getting her better.  I was hoping it wouldn't take so long to treat her.  "Several months" is a lot of waiting, hoping and anxiety.  I am learning that I need to lower my expectations and just focus on the day-to-day of getting her well.   Anyone who knows me, knows that I don't do anything day-to-day...I am a planner and I need to know what's going to happen.  Unfortunately, with JRA and Uveitis, projecting her outcome is impossible.  There are too many variables involved and every child is different - so I am going to learn "patience" in ways I never knew before.  Sigh.  Next Friday, we move to Methotrexate - and my hope is that she does well with it.

Also, she is also doing great from a walking stand point.  She is getting around much more independently.  She looks like she has wooden legs, but we are hoping that just continues to walk better and better.  Lately she has been "fast walking", which is so cute and enjoyable to see!

She is due back to the eye doctor on Thursday, September 20th, and as long as she keeps responding well, we will likely go every week until further notice.

Matt and I have reached out to her rheumatologist about teaming with the experts at the Wilmer Eye Institute at Johns Hopkins. 

Keep the well wishes coming and thank you for keeping up with her condition.  I will update you when we have news to share.

Lucianna's Proud Mama

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