Showing posts with label Nathan. Show all posts
Showing posts with label Nathan. 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.


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.


Tuesday, September 03, 2013

Apples vs. Oranges Part III

I was on anti-depressants when I got pregnant with my third child and despite their "C" status, I stayed on them through my entire pregnancy and another two years after.  It was tough going.  As my waistline expanded again for the third time in three years, strangers were shockingly bold.

"Do you not know how to stop this?"

"Do you understand how you get pregnant?"

I even had a woman in Zion's National Park talk very loudly (looking over her shoulder) about how population growth was ruining the world and people who had too many children were irresponsible.  Of course, I was in my third trimester holding a 19-month-old and a three-year-old on my lap, exhausted and sweaty.  Now, not only was I the height of stupidity, but also ruining the planet.  It was a heavy burden to carry.

We moved during that pregnancy and I remembered the women at church did a little spotlight on me.  I had told the woman who called that, though my daughter was 2.5 at the time, she was almost 3 and she should say that she was almost three.  She didn't.  The spotlight said that I had a 2 and a half-year-old, a 17-month-old and was expecting another baby in July.

As they read the spotlight in church, the ladies behind me whispered, "How is that even possible?"

I felt foolish everywhere I went.

****

There were at least a dozen miracles that surrounded my third child's pregnancy.  They were what I clung to, trying to remember that God was there.  That He hadn't abandon me. Those are the only stories I usually share.  And I got a happy ending, too.  Nathan James was born on July 16, 2002 weighing a whopping 9 lbs 10 oz despite the fact that he was 15 days early.

The medicine that was prescribed to push the cancer meds out worked.  Nathan had no ill effects of the medicine.  He is one of my three with Macular Degeneration, but because I wasn't on cancer meds with the girls, no doctor finds any correlation.

But I wanted to address myths about surprise pregnancy.
1. That they are no big deal.
2. That there is no mourning.
3. That the mother had a choice.
4. That the problem is temporary.

For me, this "surprise" rocked me to my very core.  And whether I should or not, I mourned.  Even as I held my new baby boy, I would tell him how very sorry I was.  Sorry that I hadn't been more excited.  Sorry that I wasn't a better mother.  Sorry that I had wanted a girl.  Sorry.

A woman I was very close to, got pregnant around the same time I did.  She miscarried and I watched as that rocked her to the core.  And despite everything, against all odds, I remained pregnant and carried a healthy baby full-term.  It didn't make any sense to me at all.

The struggle didn't end when he was born.  I had so many dark days over the next few years. My heart would break over the things I had wanted to do, but couldn't.  And all 11-years-old of him proves the permanence that a surprise pregnancy brings.

As a pro-life, God-fearing woman, I only had one choice:  to continue my pregnancy.  I'm not really sure what that means when these women would say, "They have a CHOICE."  What choice did I have?  Once you're pregnant, what choice do you have?

True, not all surprise pregnancies are this traumatic.  My 5th was a surprise too, but a surprise I was infinitely more equipped to handle.

In any event, who are we to judge?

Perhaps someone can read my story and still say it's nothing.  But it wasn't "nothing" to me.  And in the same way that we work to be sensitive to those struggling with infertility, we should be sensitive to those who are too fertile, too.  Let's not look at anyone's trial and just assume that it's no big deal.

"Be kind, for everyone you meet is fighting a hard battle." --Ian Maclaren

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.


Saturday, February 16, 2008

Expression

After dinner tonight Nathan (5) said, "Do you know the expression, 'Throw in the towel and call it a day'?"

"Yea," I said, "I know that expression."

"It doesn't mean that you have to throw a towel. You can just go do something else."