Wednesday, February 23, 2011

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.

Friday, February 18, 2011

Scratch that...


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.

Friday, February 11, 2011

It's a date

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

Monday, February 7, 2011


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!