Monday, April 29, 2013

All about Abby

 Our princess is growing and changing so much!  I just can't wrap my mind around the fact that she is 9 and 1/2 years old.   Since her reflux surgery 2 years ago, she has gained weight and length!  She has outgrown her Tumbleform stander (which we donated to UCP and got a bigger size from the 'waste not' program).

We are scheduled to see the orthotist soon to get new knee immobilizing splints made.  These have become a more critical part of our therapy routine lately.  Because Abby has had so much growth her legs are becoming tighter and much more difficult to stretch and keep limber.  

That's how CP shows itself in her... the more she grows, the more of a struggle it will be to prevent problems related to spasticity.  

I'll never forget the first PT home visit we had when she first came home.  Six months old and weighing only 5 lbs, her tiny limbs moved easily through the range of motion exercises the therapist tried. Then he told us she did Not have cerebral palsy.  We were thrilled!!  Especially knowing that the bleeding in her brain as a newborn put her at very high risk for CP.   

Time would tell that he was most certainly wrong and we learned a valuable lesson...  never bank on predictions.  Only God knows the future.  We trust Him for today and live in the moment.   Try as they might, doctors/professionals can not predict how a child will recover from anything.  We've heard a lot of predictions since Abby's birth... some have come true, some haven't and some unexpected things have surfaced that no one saw coming.

working hard on taking steps!

So, here we are 9 years later, thrilled that our little girl is growing and becoming a young lady, but sad to see her struggle with pain and stiffness that we can't take away.

This month we added another specialist to our long list:  a Physical Medicine and Rehab specialist.  He focusses more on the functional abilities of kids with special needs; easing their spasticity and pain, helping them to achieve the most out of their abilities.  For Abby he recommends starting Botox injections in her hamstring and adductor muscles.  This will help her be able to straighten her legs and will make changing diapers easier.  This next step will hopefully bring her some comfort and keep us from surgical options in the near future.

Enjoying her new swing

Saturday, April 20, 2013

New Smile- post op day #9

Little cutie

Post op day #2

New smile- post op day #1

We've been without internet due to a tornado/storm that came through our area the day of JN's surgery last week... lightening fried our router!  I got hit with the stomach virus this week but am now back on my feet and ready to update with some pictures.

He tried so hard to smile on that first day.

Eating lunch with Daddy

Popsicle snack (ignore the girly bib!)

Friday, April 12, 2013

New smile #2

Today is a new day and Jack has a new smile! He is doing really good today. He got some pain meds this morning and has been playing most of the morning.

First on the menu was a green Popsicle which he enjoyed. Then grits, eggs, milk, juice and even some biscuit! I was impressed to say the least.

He's a little cranky but overall a happy boy this morning.

We hope to go home today since he's eating and drinking so well.

Thursday, April 11, 2013


Jack Nathan is settled in his room and doing fine. His nurse is staying on top of his pain meds. He is in and out of sleep now.

Minutes after getting to room 917

"How do I get this off?"

Handsome boy!

He is aware that his lip is sore but seems to be much more disturbed about the IV and BP cuff!

It's been a long day and The Lord has provided peace and joy for us all. Grandma and Aunt Carolyn are holding things together at home in the dark... No power after the storm!

We love you all and so appreciate your prayers and notes of encouragement!


Sent from my iPhone

Finally in surgery!


Finally gave up, relaxing on his ride around the unit.

Wednesday, April 10, 2013

New smile #1

Tomorrow we begin the journey of Jack Nathan's cleft repair surgeries. One of many. This first will be a bilateral lip repair. The surgeon will have to "undo" the healed side so he can properly connect the muscle and tissue across the entire upper lip. By this time tomorrow Jack will have a new smile. I have to say we will miss his cute, wide smile. We are looking forward to helping him learn to speak after the initial repairs over the next 6 months.


We appreciate all prayers!  Little sweet heart has had a rough surgical history, so we hope he doesn't experience any additional trauma tomorrow.

Tuesday, April 9, 2013

Happy Birthday Josiah!

Sweet boy,
It's hard to believe it was 7 years ago that we first held you in our arms.  After what seemed like a very long time of waiting, you were such an incredible gift to us!  We'll never forget looking into your beautiful eyes for the first time.  You have amazed us ever since!

We love to just watch you.  As you sing and dance, as you draw, as you talk and ask so many questions... we just adore you!  This has been a year of lots of changes and some really hard days.  We hold you a little closer to us since your sickness in China.  

This post is over a week late... you know why.  Life is more than just a little crazy these days!  You are a wonderful brother and we are so proud of you.

Happy Birthday Josiah!

We love you to the moon and back,
Dad and Mom

Friday, April 5, 2013

New Beds

Patrick has always wanted to build bunk-beds for our kids.  About a year ago he found plans that we both really liked!  Finding the time to tackle the task proved to be a challenge.

After Jack Nathan came home we started considering more seriously how we needed to arrange the kids for optimal sleep, privacy and special Abby needs.  During this discussion Patrick decided it was time to jump into the bunk-bed project!

Several months of measuring, cutting, sanding and staining...


They are so beautiful, and the boys love them.  For now they are not actually "bunked" but serve as great new sleeping spots.  Some day the boys will go upstairs to a bigger room, but for now everyone is cozy downstairs.

One more goal on our to-do list... CHECK!