The Race Begins...

TOMORROW!!

Bright and early Saturday morning we will run, bike and swim to raise money for our friend's adoption.  Little Adriana is waiting in Guatemala to come home to her family!

It should be fun!

Check back in a few days to hear about this adventure.

Abby is doing better.  She is still not feeling back to normal, but has not had fever today!  Thanks to those who prayed for her this week!!

Sick on a Rainy Day

Today has been rather strange.  Abby woke up not acting herself.  She was retching and trying to throw up, along with seizure like behaviors.  Not like her typical seizures (if you can call them "typical").  I could tell something was wrong.

After watching her and using her VNS magnet several times, I gave her morning meds.  She continued this odd behavior for about 35 min before I called her neurologist.  She had me give more of one of her daily seizure meds and watch her for another 20 min.  I called her back after 30 min when Abby started having jerky movements that were becoming rhythmic.  

The doc told me to give Abby Diastat, which I was really trying to avoid.  But since Abby didn't have a fever she said we could hang tight at home and watch to see if she would improve!  She started to relax a little, but with in another 45 min her jerky movements continued and picked up a little momentum.  

Once again we called our neurologist who told us to head to the ER.  Fortunately for us it was another pretty uneventful trip.  By the time the residents had examined her and gotten her vital signs she had mostly stopped the jerking, although she was still very agitated.

We are home now and Abby has been vomiting and started running a fever.  Although I'm hoping this will not progress into our pattern of hospital stays and prolonged seizures, I've packed my overnight bag and have started aggressive Tylenol/Motrin treatment!!

Swim For Melissa

This weekend topped off the fund raising efforts of all the families participating in the Swim for Melissa event!

It was amazing sitting by the pool watching group after group of enthusiastic kids swimming to help improve the lives of premature babies.  The only thing that would have made it more fun for us is to see Abby swimming with them.  After being a small part of this event we are hopeful that she will swim next year!  With a little help from Dad of course.

Thank you to Julie Golos, Rhoda Klopfenstein and David Clark for contributing on Abby's behalf.  All together our community raised over $133,000 for the Huntsville Hospital Neonatal Unit to buy state-of-the-art Giraffe Omni beds!  These beds truly were a blessing for Abby when she needed protection, comfort and high tech care.

Abby made a short appearance Saturday on WHNT news channel 19 evening news!

or

Check out their site and look under Top News Story Flash for the "Swim for Melissa" clip.

Triathletes for Adoption!

Meet our dear friends David and Gracie Clark.  This post is about their family.  

We met them almost 2 years ago and instantly clicked.  Our families have some major things in common: we are all outdoorsy type people, we enjoy sitting together and chatting over a good cup of coffee (or Mocha), and we've all been changed forever by our very special preemies.

I'll let them tell their story about their precious preemie son Drew, and the events that have led them to where they are today.  Trust me, it will be worth your time and tears to get to know them.

Fast forward to August 2008!  The Clarks are hoping to finalize a long awaited adoption of a little girl in Guatemala.  Adriana is 20 months old and has some special needs including vision loss (CVI), epilepsy and a dislocated hip.  Please visit her site to learn more about this gorgeous child!

This brings me to the point of this post.  You might be wondering about the title for today.  Yes, we have become Triathletes for a cause!  

For those who know about the International Adoption process can probably guess what we are up to.  For those who don't... well, let's just say Adoption is Very expensive and time consuming, but so very worth it!

www.teamadriana.com

Patrick and I have committed to participate in an upcoming Triathlon in order to raise money to help bring Adriana home from Guatemala!  We are asking for friends and family to rise up and agree to sponsor us as we run, bike and swim for the Clarks.

Patrick will run 3 miles, bike 6 miles and swim 400 meters.  I am swimming on a team with two teenagers who will be accomplishing the running and biking.  It should be fun!

David and Gracie first heard of Adriana's need for a home through an organization called The Shepherd's Crook.  This ministry strives to find families for children with special needs from all over the world! 

Your tax deductible donations will be managed by The Shepherd's Crook for Adriana's adoption.  Every child they list has an account open in their name for donations specifically made on their behalf for adoption purposes.  On-line donations are safe and simple!   If you would prefer to mail a donation instead, mark your checks "Adriana Clark" and send to: 

The Shepherd's Crook Ministries, P.O. Box 773, West Chester, OH  45071

 

We feel privileged to be part of something so special and so close to God's heart!  Adoption is such a wonderful way to obey our Father's command to care for the orphan.  Adriana has a special place in our hearts and we know God has a wonderful plan for her life.

Will you join us in this exciting adventure?!  We would love to count you in!

Contact us @ patrickandpatty@truevine.net to let us know if you would like to help.

James 1:27

"Religion that God our Father accepts as pure and faultless is this:  to look after orphans and widows in their distress and to keep oneself from being polluted by the world."

A Giraffe Bed?

I know, it sounds strange to most, but this really is what they are called.  For those who are confused, a Giraffe Bed is a special "all-in-one" habitat for premature babies.

I'll try to explain why this is meaningful to us.

On August 9th our family will be joining hundreds of other families with children who spent time in the Huntsville Hospital Neonatal Intensive Care Unit (NICU).  The purpose is to raise money for these special beds in order to maximize the healing and growing that takes place in this special unit.  It will be a fun day of fellowship and sharing stories... and of course lots of swimming!

Although Abby is too small to swim on a team, she will be participating with many other "little" swimmers in the effort to raise as much money as possible for other tiny preemies. 

 It wasn't that long ago that Abby lived in a Giraffe bed.  It provided the best environment for her to rest, to safely be on the ventilator, to have the NICU noises muffled, and to be easily accessible for the nurses and docs.  With the lid closed Abby had humidified warm air pumped in all around her.  This protected her delicate skin.  Most of the time there was a cover draped over the bed to provide darkness, more peaceful sleeping and protection for her immature eyes.

There were four port holes that we could stick our hands in to change diapers, touch her and cover her head with a beanie animal if she was restless.  Offering her tiny paci was another excuse for us to reach in to her environment.

In case of an emergency with her stats, the lid could be quickly and automatically lifted high above our heads for complete access to our baby.  This happened many times. After surgeries it was just left up while it provided radiant heat to keep her warm down below.

These are a few pics of Abby in her "castle," as the nurses called it!

Abby in her first outfit (notice the bear in the above picture... Abby's wearing her dress!)

Abby recovering after 3 surgeries in 24 hours.

Corie, Abby's special primary nurse, standing by Abby's Giraffe bed with the cover on.

All this description just to say that we recognize the important role these special beds played in our preemies' NICU stay, and that we long to help other babies like Abby!

Check out Abby's Page on the Swim for Melissa Donation site!  If you feel led to help us raise money for this special cause, you can easily do so from Abby's page.

Thanks so much to all of you who care so much about our girl!

We're at the Beach!

We are all having a blast in Florida!  Gazing out over the ocean, taking walks in the sand, playing in the pool... and of course eating!

This morning Patrick and I took a kayak out for a dolphin search.  Once we got into the deeper water there weren't any dolphins, but tons of jellyfish!!  Yikes!  They were beautiful to watch gliding with the waves.  We were soo glad to be IN the boat.

Glaucoma update

We saw the glaucoma specialist last week.  Several good things came out of the visit.  The doctor used two more methods of examining her eyes in addition to the one used at her retina check up (applanation tonometry).  

He used a tiny ultrasound placed on her eye ball to measure pressure and consistently got numbers in the 30's.  This was good.  Then he measured the thickness of her cornea and found it to be abnormally thick (615 microns)... which is also good. Any measurement more than 600 microns is unusually thick, and less than 500 microns is considered thin.

In Abby's case her cornea's are thick because of multiple surgeries, which in turn makes the first pressure test higher than it should be.  The doctor also thinks that the eye drops have caused some improvement.

Another eye drop was added to our regimen and we are scheduled to see him again in one month.  He will measure the eye again and re-evaluate where to go from there.  We are all very hopeful that the drops will keep her pressures low enough (20 or below).  If they persist above 30 with the two drops then we might have to consider the surgery.  For now the doc said she shouldn't be able to feel any discomfort from her pressures and he hopes to see improvements in 4 weeks!!

We all came away from the appointment very encouraged and hopeful, but will still be in prayer for healing of this problem.

Another fun note:

Madison has opened a playground for special needs children!  It has been a project our family has been involved with this past year along with several other families.  The ribbon cutting ceremony was held last Wednesday and we got to see the park for the first time.

One of the goals we all had for this park was for typical children (siblings, family, friends) to be able to play along side children with various special needs.  I think it was accomplished!  Our favorite part is the different kinds of swings.  Abby can easily swing in at least 3 of them.  She and I went down the slide together, while Josiah tried to shoot hoops in the adjusted basketball goal.  

We really enjoyed getting to play while watching other kids that we have gotten to know do things that would be extremely difficult at a regular play ground!  The idea was spearheaded by a young lady who lives in our city.  She was born with Spina Bifida and her mobility is limited to a wheel chair.  She got to swing for the first time in a specially designed "wheel chair swing".  

Some times it's the simplest things in life that bring the most joy.

The Huntsville Times ran a story about the park, and news channel 19 also aired a short section about it.  We missed the news report but did get a copy of the paper.

The pictures aren't very clear, but we forgot our camera on opening day and wanted to give an idea of what it looks like.

This past weekend we headed up to Oak Ridge/Knoxville for our yearly vacation with my sister Christy and her family!  We all had a blast.  

Pictures of our weekend coming up soon!