On the mend

Things are a looking up around here!  Although we are still going through about a box of tissues a day, the fevers are gone and we've spent some time outside this week.  So much has happened over the past several weeks it's hard to keep up with my own thoughts, much less get them down in writing.

Abby got a special baby-doll from Grandma and Papa for Christmas and it came in the mail last week.  She is designed to look just like Abby; feeding tube, scars and all.  She even has little hearing aids and can suck her thumb.  She is lovingly made by Karen's Kids.  She is called a "special angel doll".

Abby seems to like feeling her hair.  It's fun having a look-a-like doll for our little sweetie!  I'll try to take some pics of her G-button and scar to share.

Last week as Papa was having his big surgery, Patrick and I took a walk down memory lane to the hospital where Abby spent the first 6 months of her life.  Papa was actually in the same hospital that Abby was born in. It was strange being back there again... the familiar sights and smells took us back to that day.

East TN Children's is right across the street.  We walked down all the same hall ways we spent so much time in, 7 years ago.  Some things have changed, but over all it felt the same.  It's strange how a physical place can hold so many heavy emotions... you can actually feel the weight of it. But being there is somehow comforting too.

 We spent some time on the 5th floor (NICU) lost in our memories, until we saw a family mourning in the hall way.  Too much sadness.  We quickly left with familiar heavy hearts to give them privacy.

I remember taking Abby to that window (above), once she was big enough, to show her off to family in the hallway.

NICU Entrance (below)

Lots of family and friends showed up to support Papa and Grandma that day!  

Although it was a heavy day of waiting, Josiah loved having special time with Aunt Connie and Uncle Matt.

This past weekend we enjoyed a visit from Bill and Maddie!  We had a great time together and Josiah especially loved having his cousin here to play with.  They got to visit the aquarium, the space museum and go for a short hike on our property.  (Thanks for flying out here to hang with us!)

We made special "flaming" strawberry cupcakes!  They were so yummy.

Scratch that...

Date.

RSV has hit our house and Abby is really sick.  Today we had to cancel her surgery.  Anesthesia won't consider her ready for surgery until 4 weeks out.  Major Bummer!!

Our poor little girl is just miserble.  Praying that she won't need a trip to the hospital.  Last time she had RSV she ended up in ICU on a vent, after a very long seizure!

We are starting antibiotics today for a likely 2ndary infection (sinus infection, pneumonia).

Although this feels like a big setback we know that our Heavenly Father knows all about Abby and her needs!  His timing is best.

It's a date

Abby's Nissen Fundoplication surgery is scheduled for Monday, Feb. 21.

Mini-One

This past month has been full of changes and waiting.

Abby had yet another feeding tube placed last week.  This one will stay.  It is a non-balloon, low profile G-button for those interested.  It's called a Mini-One.  So far we like it!  And contrary to our predictions, Abby seems to be more comfortable with it.  That is the best part of all the changes.

We got a call last Thursday from her GI doc's office reporting that all the kinks had been worked out and the surgeon has agreed to perform the repeat Nissen Fundoplication without any further testing.  This was great news!  (He was present during her procedure last month and saw her esophagus and state of the previous Fundo done 7 yrs ago)  


Now we are waiting for a call from the surgeon's office for a surgery date.

During all these changes Abby has lost a few pounds.  Her doc wants to change her back to Pediasure for her nutrition instead of the special (expensive) formula she's been on for Jejunal feeds.  We are really hoping this change in formula will help her digestive system function more normally and eliminate some of the problems she's experienced while on the Peptamin.  Before the J-feeds began 4 yrs ago she rarely had bowel trouble and we could effectively manage things easily by adding water to her feeds.  This has been a big source of trouble for us lately!

Looking forward to new days of comfort ahead for Abby and time to spend on other things like growing and playing!

Another major change for our entire family hit this month for our sweet Papa.  Last week he was diagnosed with cancer.  We are praying for his health, healing, strength and comfort!  We love you Papa!

Meant To Be

We've decided this will be Abby's Birthday song this year.  

Steven Curtis Chapman

from Veggie Tales- It's a Meaningful Life!

Long Before You Drew Your First Breath
A Dream Was Coming True

God Wanted to Give A Gift To The World
So He Wrapped It Up In You

Every Step That You’ve Taken
Every Move That You Make
Is Part Of His Plan

You Were Meant To Be Touching
The Lives That You Touch

And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring
And Singing The Songs
You’ve Been Given To Sing

You Are Perfectly, Wonderfully,
Beautifully Meant To Be
You Were Meant To Be

Long Before You Took Your First Fall
You stumbled to the ground
God started telling the story of you to the angles around
Every failure and victory
Everything in between
Its all in his hand

You Were Meant To Be Touching
The Lives That You Touch
And Meant To Be Here
Making This World So Much More
Than It Would Be Without You In It

You Were Meant To Be Bringing
The Gifts That You Bring

And Singing The Songs
You’ve Been Given To Sing

Days 6 and 7

It's been a rough weekend for Abby.  Just more of the same discomfort, coupled with a few changes.

Saturday I had her in the bath *carefully* changing her dressings.  As I struggled with a stubborn piece of tape, out popped her feeding tube!  Now, normally it's not a huge deal to change a simple G-tube (not GJ-tube).  But being that this one was placed for a purpose by her doctor I was really trying to keep it in till her appointment.  And being that I have somewhat of a pride issue, I really wanted to show up to our appointment with it still intact... just to show him that we could do it.

To my surprise I was able to maneuver it back into her stomach.  And it worked!  At least until this morning.  Abby had several seizures during church and after about the 5th one I looked down and saw that her pants and shirt were soaked in formula/medications.  yuck.  I knew it had popped out again during one of her seizures.

We gave up on that crazy tube and put in a new Mic-key button.  There's nothing like an obnoxious change to make you appreciate what you had!  I actually missed that G-button.  It's so much easier to use than the 12+ inch, tape laden contraption she had this past week.

The purpose is the same- feeding into her stomach.  And we now know it doesn't matter what type of tube it is, she is just as miserable with both.

It's 10 pm and she is finally settled into bed and comfortably asleep, after 12 seizures and hours of agitation.

Days 4 and 5

Made snow cream.  yumm.  The boys and mommy loved it!

Got Abby's follow up appointment with the GI doctor for Jan 19th, next Wednesday.  Continuing with the hourly bolus feedings.  2 oz has been our max at one time.  As expected Abby just isn't a happy camper during and after feeds.  As long as we aren't feeding her she seems pretty happy.

I know I've said it before but, I HATE REFLUX!!!!

We are trying to teach Josiah not to use the 'hate' word unless it's really necessary.  Today in my world, it fits.

I just want her to enjoy being fed.  To enjoy tasting food and swallowing again.  I think at this point she would rather be hungry.

Waiting on a call back from the doctor's office for further feeding instructions.

Last night we enjoyed a lovely dinner with friends and an extra special treat:  a winter four wheeler ride through the snowy, moonlit woods!  It was like breathing fresh air for the first time in days.

Thanks friends!