Tuesday, July 30, 2013

Glaucoma returns

Abby's eyes have changed color.  She's always had beautiful, dark brown eyes. Now they almost look blueish gray.  Didn't think that is supposed to happen this late in the game, so we had them checked out by her retina specialist today.   

He confirmed that I am NOT crazy and that her corneas are cloudy/hazy and noticeably different than previous visits.  They checked her eye pressures and discovered them to be significantly elevated!  He had taken her off the glaucoma drops at our last visit.  I think they measured around 19 last time, which was acceptable.  Today they were 44!

I guess she proved she really does need the drops.  He told us that high eye pressures cause the changes we were noticing.   Typical Abby... she doesn't mess around!  Precious girl.  

On a heavier note we are praying she isn't having discomfort with these high pressures...

Hoping to see those deep, dark, brown eyes again soon.

Thursday, July 25, 2013

Rachel's growing!

Precious baby girl...

Baby Rachel on day 3- with Daddy's hand

Tiny girl resting and growing!  She's almost 1 month old.

We had the privilege of visiting with little Rachel this past weekend!  She is amazing and so perfectly formed.   Please continue to pray for her growth and development!  

Tuesday, July 16, 2013

My Girl singing

Check out my amazing sis singing a beautiful song produced by her wonderful husband, Lee Younger!

"He'll never leave me, He won't forsake me.   The Lord's my helper, this world can't shake me Whatever troubles may appear, My Savior will be near"

They are serving at The Bridge, in Chicago this week.

Sent from my iPhone

Thursday, July 11, 2013

Epilepsy in July

(blurry picture- courtesy of blogger glitch)

Sometimes I'm surprised to learn something new at a doctor's appointment... 

This might sound strange, but for each of the (over) 10 specialists we see for Abby's care, over time I've developed a list of expected things to happen.  

Some will want detailed reports about her weight gain, or her birth history... others don't.  Some providers have become my personal friends, some have not.  Some need detailed information about her medications, others don't.   There are visits where we have to enter into a "hard" conversation about an aspect of her life, others we can laugh and essentially engage in a more casual conversation.  Some show concern for my mental health, others are too busy to care.

Abby's seizures have increased steadily over the past months.  Today we saw her neurologist for a regular 6 month visit.  I reported about Abby's seizure activity.  Along with these seizures she continues to have episodes of unexplained fever.   Although we already know that Abby's thermoregulation system is 'out of whack,' for lack of a better term, I found out today that one of her medications also contributes to swings in her core temp.    Needless to say, I was surprised and a bit relieved to learn this.   There really are reasons for this strange, physical change that makes sense.

Today we added a new seizure medication to Abby's cocktail.  It's not supposed to have a sedating effect, which is good news.  It also comes in a liquid form which I'm VERY happy about!  No more opening capsules and carefully spilling their messy, powdery contents into a feeding tube.

Over the next 6 weeks we will be slowly adding the new and weaning off the old.

Hopefully for Abby we will start seeing some improvements!

Wednesday, July 3, 2013

Miracle baby Rachel

Our precious niece arrived last week at only 25 weeks 3 days gestation.  Baby Rachel Anne weighed 1 lb 6 oz and  measured 12.5 inches long. She is a precious miracle!

Until we are able to share more about this special baby, check out her "home" away from home, UT Medical Center's NICU.

For updates on Rachel go HERE.
Their page is racheldonovan (no spaces).

Please pray for this precious miracle baby!  She wasn't due to be born until October 7th and will remain in critical care for several months.