Showing posts with label Juvenile Macular Degeneration. Show all posts
Showing posts with label Juvenile Macular Degeneration. Show all posts

Friday, March 13, 2015

Great News for Nathan!

For the first time in more than a year, both of Nathan's eyes have shown improvement between doctor appointments.  And he'll get at least a 5-month reprieve from eye surgery because of it.  I am overjoyed, overwhelmed and grateful.  The catch is that I know that I am no more deserving of this good news than I was of bad news for the last year or more.

Still, it's good news.  Heck, it's GREAT news!

When we got bad news, I would take it to my Father in Heaven and pour at my heart and plead for my son.  Now, I'll do the same, but this time pouring out my heart in gratitude.  I am grateful to accept this blessing for as long as it is extended to our family.

Nathan after the Christmas band concert.

Sunday, September 21, 2014

Nathan's Laser Eye Procedure Part I

On Friday August 29th, I headed to the junior high to check Nathan out of school.  I had a bag with a black morphsuit, which had been last year's Halloween costume.  Unfortunately, Nate hadn't been able to put his hands on the mask--a casualty of Halloween being some 10 months ago.  So my bag-o-tricks also included Wendell's wide-brimmed trek hat.

I picked Nate up, a bit anxious about how long it took to get him down from class, and we headed to the eye doctor's office.  This appointment had been more than 6 months in coming.  In January we had received the news that the oral meds that were working on the girls really, truly weren't working on Nathan. 

In March, we did an injection in Nate's right eye, but it was as unsuccessful as Emma's had been. And so began an uncomfortable waiting game.  Fortunately, the retinal specialist's office was dogged about getting the PDT approved and one day in early August I got the letter that said that Nathan had been approved for the expensive medication necessary to make the PDT laser work.

Now the day had arrived.  We'd covered our basement windows in black plastic, pulled all the drapes, lowered all the blinds.  See, this medication--I think it's called Visodine--would make Nathan incredibly light sensitive.  Administered by IV, this medication would allow the cold laser--something that you can't feel--to zap and kill offending cells at the back of Nate's eye.  Hopefully, this would drive fluid out of his eye and restore vision.  But you have to use the medication very quickly.  We would have a mere 20 minutes from when the meds were in Nate's system until the laser procedure would have to be complete.

However, the side effect of the medication is that it makes the body incredibly light sensitive and can cause the skin to blister if you're out in the sun in the next 72 hours.  Thus the morphsuit, the hat, the black plastic and drawn drapes.

Tuesday, July 15, 2014

The Post I Didn't Want to Write

March 2014

Part of me has kept hoping that if I don't write this post, that it's not true.  Yet, time and doctors appointments march on and truth is truth whether I want to write it down or not.

Nathan is not doing well.

There.  I said it.  His last several test for macular degeneration have all be successively bad news.  It is as inexplicable and the good news from 9 months ago.

In January, Nathan had a 6 month follow up appointment along with Emma and Annika.  Emma's eye checked out great.  Dr. Cory thought Annika was in good shape as well.  But Nathan was dramatically worse. Dramatically.

I called our pediatrician, who is also a dear friend.  We increased Nate's meds by 50%.  And waited for two months.  March 4th was reckoning day.  I brought Nathan and Annika in for appointments.  Annika was decidedly doing better, but for Nate it was as if we'd done absolutely nothing.


July 2014

My goal when I began writing this post months ago was to go into detail on a somewhat scary, but necessary procedure that my retinal specialist thinks will help.  Despite the tone of opening of this post, I felt incredibly calm about the whole thing.  And was somewhat, un-rushed about pursuing the additional procedure which we cannot seem to get insurance approval for. (Something about Nathan not being able to have "age-related" macular degeneration at 11.  While that fact is technically true, it's the only diagnosis that matches his symptoms.)

Meanwhile, Nathan has now had two appointments with more inexplicable good news.  But it's not quite good enough.  And Nate still needs the expensive PDT and we've made no headway with the insurance.

So we've set a date in Sept.  If the insurance won't pay, Wendell and I will pay out-of-pocket (possibly with some family help) and the doctor will donate his time and laser so we can just Get The Thing Done.

The doctor is quite confident it will help.  Still, we both (the doctor and I) recognize that we are using Nate as a guinea pig because of his age (older than Annika), situation and having and eye to give.  (Unlike Emma, who only has one good eye.) Which isn't exactly the kind of thing that makes a mom comfortable.

One the flip side, if we don't do this procedure and he gets huge lesions in both eyes.  Well, that's not a good option either.

It's a weird place to sit, with no easy answers, but a decision that must be made.  And regardless of the outcome, there will be consequences to be paid.

Nate rockin' Wendell's Oakleys

Sunday, January 05, 2014

A Note on Nate

We had our usual 6 month retinal specialist appointment last Friday.  Emma is doing awesome.  Annika was OK.  Holding her own, we think.  For Nate, though, things had gotten bad.  Really bad.

I honestly wasn't paying attention to how badly he did at his eye exam because the previous week his glasses had fallen apart. I've actually never seen anything like it.  On one Sunday both of his ear pieces fell off within hours of each other.  We found a pair of back-up glasses from last year.  But I dilly-dallied about getting the replacement as I dealt with the Christmas holidays.  I had, finally, begun the process of getting replacements when we had our appointment.  But the replacements weren't in.  So Nate was not only reading the chart through dirty glasses--a constant in his life, but also with the wrong prescription.

I really didn't think anything of it when his test went really wrong.  I didn't even pay attention to how he scored.  Did he get a 20/40 or a 20/50?  Couldn't tell you.  I just waved it off and told them about the glasses.

Then we got the imaging done.  And I saw the thing I never wanted to see.  One "slice" of Nate's imaging in his left eye looks EXACTLY like Emma's right eye--her blind eye.  There it was.  This bulb like bulge under Nate's retina with a bit of something floating in it.  It is likely that the "something" is some kind of fibroid or calcification or whatever it is that filled Emma's bulb shaped bulge and made her go blind.

Here I sit with another 11-year-old at risk of going blind.  We've increased Nathan's meds.  Again.  The doctor mentioned doing shots. Possibly.  Remembering that it didn't help Emma.  There's a lot a shoulder shrugging.  We're guessing.  And hoping.

We've adjusted Nate's meds and we'll wait 2 months to see what that will do.  Sometimes I think about if it doesn't work.  Do we do the shots in the good eye to try to save it?  Or in the bad eye before he goes blind?  Or (horror) do we do both?  Emma had only one eye to save, so it was a no brainer.  But Nate's case is more complicated.

And so I go the rounds.  Should I try to get Xanax and bring it with me that day?  Is he brave enough to do both eyes?  Can I prep him well enough to go through the pain and discomfort of doing one eye and have him sit do to the other?  If not, (or just in case not) which eye do we start with?

Meanwhile, I posted on Facebook about our quandary and had an outpouring of support.  And I FELT it.  The love.  The prayers.  So many people who are struggling with their own problems and issues praying for us.  When, really, it's not all that bad.  But I'm grateful.  And humbled.

And if you're the praying sort, will you pray for Nate?  He could use it.

Monday, October 07, 2013

Annika's Turn

Annika's vision has slipped a bit.  She's fighting fluid under her retinas.  Nate, on the other hand, has never been better.  So I really believe it's just a matter of finding the right dose.  She was barely 5 when she was given meds for the first time.  She's growing and her meds have to grow with her.

Two months after increasing Annika's meds by 50%, her left eye is doing better, but her right eye is still getting worse.  So we've increased her meds by another half a pill.  In a few more weeks we'll see if this saves her eye or if we have to go up again.

In good news, Annika in a champion pill taker.  That girl can down 2 pills in one swallow--no problem.  And she's 7! She takes them in applesauce.

Two months ago Emma's eyes were slightly worse.  We bought her a pill box and with her pill taking getting much more consistent her eyes are doing great.

And Nate. Can you believe that only a little while ago we were so worried?  Now he's doing awesome.  He sees 20/20 in his good eye.  I honestly never believed that would happen.

Since learning about our kids eye condition more that 3.5 years ago, Beck has been praying for his affected siblings.  At 5, he's been praying for them since he could pray.  He prays for them in every prayer. Every. Single. Prayer. Because we were worried about Nathan for so long, Beck always prayed for Nate first.

"Please bless Nathan's eyes," he prays.  And then almost as an after thought he adds, "And Emma's and Annika's."

But this last month with bad news for my little girl twice in a row, I know I need Beck's prayers on her behalf.  So we talked about rearranging the order--praying for Annika first.

I honestly believe that God listens carefully to small children's prayers.  And I believe that Annika will get better.

Monday, June 24, 2013

Nathan's Miracle

I sat in my now familiar spot in the eye doctor's office.  We were just there to update prescriptions from a year ago.  It's becoming somewhat of a juggling act to get 4-5 kids to the eye doctors on the same day.  This day was no different and I was texting and talking to Wendell who had to pick Emma up early from her volunteer position at the library to get her to Dr. Lloyd's with the rest of us.

They moved us from room to room to keep the flow up with all the kids.  I just kept following whoever was next to get their eyes checked.

Anson had gone first and except for being very near-sighted (he's my child) his condition is kinda ho-hum.  Dr. Haggard, who is an optometrist at the clinic has never seen my kids before.  As he looked at Nate's chart he was surprised that Nathan was notably far-sighted.

"Wow," he said, "you're very different than your brother!"

I told him that three of my children had macular degeneration.  Nathan was one of those.  "All of my kids with macular degeneration are far-sighted," I mentioned.  Although I could tell that Dr. Haggard totally got what a sobering diagnosis this is, since I was nonchalant about it, he just went ahead with the vision screening.

Dr. Lloyd popped in when Nate was about half done and gave Dr. Haggard a more thorough low-down on what had happened with our kids.  As Dr. Haggard was testing Nathan's right eye, Mike (Dr. Lloyd) and I fell silent.  The best we had ever gotten Nate's right eye to see was 20/40.  As we approached that point, we were interested to see what would happen.

Nathan sailed right through the 20/40 line.  He got every letter correct!  And again on 20/30.  He even got most of the letters on 20/25 line right!

"This is the best he's ever done with this eye!" I enthused.  "It's amazing."

My words were so inadequate for what I was feeling.  I wanted to be like the woman in Ephriam's Rescue after she made it across the river.  I wanted to raise my hand and say, "I want everyone in this room to know that you have witnessed a MIRACLE."

But I didn't really need to say it.  Both Mike and Dr. Haggard got it.  "Thank the Lord," said Dr. Haggard.  I mentioned something about divine intervention.

It confounds medical science that a boy with a lesion in his eye and fluid under his retina should be able to see 20/20 when using both of his eyes.  In fact, all of my children see 20/20.  And three have fluid under their retinas.  Every doctor who sees them ends up shaking his head.  It makes no sense.

Then there's this little matter of, why us?  Why do we get this miracle? It seems like so many around us are suffering and struggling.  Why do we get the miracle?

Then I think, who am I to question God's will?  I  can only be incredibly grateful that He has seen fit to bless us in this way.  I suppose that for now we've learned what we need to know.  I am grateful for the lessons and the blessings.

Monday, April 30, 2012

Where We Are

I don't really know if I should give updates anymore about the kids eye condition.  It's not that things don't change--they do.  One visit, I might have mostly good news.   Another visit might be mostly bad.  To a degree, these are negligible changes.  The critical thing is: everyone can see.  And everyone can see pretty darn well.

If things go really, really bad or really, really good--I'll post.  But these minor ups and downs seem more likely to traumatize my loved ones than provide them with actual information.

Still, after that lengthy intro, I will give an update on the kids' eye condition.


We met with Dr. Two in March.  Nathan's bad eye had stopped getting worse.  That's the good news.  The bad news is that everyone else's eyes got worse.  Emma's good eye had a little more fluid.  Nate's good eye was a little worse and both of Annika's eyes were worse.  In a very minor way.  We're talking changes in micrograms of fluid.  Tiny.

It's not good news.  But it's not terrible news.  Dr. Two called our pediatrician and we doubled everyone's meds.  We'll see in June what that does.

I took Anson, Nathan and Annika in for glasses check-ups with Dr. Lloyd.  He was so pleased at how well everyone can see.  He said that everyone can see at a 20/25 or better.  And we got everyone new glasses (Annika for the first time!).

I am still hopeful.  We have great doctors.  Time is on our side.  And the kids, as always, are in God's hands.