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!

Precious Eyes

Yesterday Abby added a new diagnosis to her long list.  During her yearly check-up with her retina specialist he decided to check the pressure in her eyes.  As I watched his face during the short test I quickly realized something was wrong.  They poked both of her eyes with a small tool and read the numbers. 

Normal eye pressure falls between 8-21 mmHg.  Abby registered 48 mmHg in her right eye!

The doctor looked up and told me that Abby has glaucoma.  Her right eye is not draining the fluid properly so it has been building too much pressure.  Abby's history with ROP (retinopathy of prematurity) and her multiple eye surgeries have caused scar tissue to clog the drainage system in her eye.  If left untreated, the building pressure in her eye can eventually damage the optic nerve and completely destroy any vision she has left.  

ROP is one of the many complications of Abby's prematurity.  It can rob normal vision from it's tiny victims.  In our case, Abby started receiving eye exams just a few weeks after her birth.

Her first exam was delayed a little longer than other preemies her gestation because she was in such critical condition.  After about 8 weeks of weekly exams she started showing signs of Retinopathy of Prematurity.  This is abnormal blood vessel growth inside the developing eye.

The majority of eye maturation occurs between 28 and 40 weeks gestation.  When a baby is born too early, the normal development of these blood vessels stops.  The body some how triggers new growth (long list of possible reasons: oxygen, being on ventilator, other complications) but it can become very abnormal, forming scar tissue that eventually grabs the retina and pulls it away from it's natural position against the back of the eye.  

Abby had treatments for ROP beginning with laser in both eyes.  She remained stable for a while but eventually showed drastic eye changes that needed more treatment.  She was transferred to the University of TN's NICU for a special surgery to repair the worse eye.  This surgery failed and the surgeon told us there was no hope. 

 Our wonderful neonatologists at East TN Children's shared one last idea before we gave up.

I flew with Abby in a special medical transport plane to Michigan for treatment at William Beaumont Hospital.  Dr. Trese is a world renown retinal specialist who specifically treats premature infants.  During our month long stay in MI Abby had 2 more surgeries (vitrectomies).  One retina reattached and one remained completely detached.

Abby's vision is still not entirely known to us.  According to her records her left eye's retina is completely detached with no vision potential... but we know she can see light.  Her right eye has a reattached retina, a visible macula and a pale, intact, optic nerve.  We know she sees light and also some objects in that eye.  

Abby is now getting eye drops twice a day in her right eye, and will see a pediatric glaucoma specialist in Birmingham next Thursday (July 3rd).  Our doctor told us children usually need surgery to correct the problem.  

We find ourselves starting down a new road of unfamiliarity.  It seems strange that Abby's vision could get any worse... but I suppose we shouldn't be surprised at anything.

Another chance to learn to Trust our Lord.  It makes this verse have a whole new meaning.

"Trust in the Lord with all your heart and lean not on your own understanding; In all your ways acknowledge Him, and He will make your paths straight."

Proverbs 3:5-6

My Utmost for His Highest devo for today!  Seemed fitting to share.

Happy Father's Day!

Since I haven't posted in a while, I thought I should put something up!

Abby is finally feeling better.  She had more fever this week, but now it's gone and the mucous is making it's way out as well.  Finally!

This past weekend we went to TN to celebrate Father's Day!  We had a wonderful time with family just being together.  Saturday we went to the zoo with Grandma, Papa, Aunt Connie and Matt which was really fun.  It was cool enough to enjoy walking around the park, checking out all the neat animals.  Josiah still remembers a lot of his animal signs which was good to see.

That night I got to see my sis and her girls!  We enjoyed chatting, catching up, talking about pregnancy (she's expecting) and watching the girls play.  I always feel refreshed after being with them.

Sunday morning I got Patrick up very early (4:30) to go to a special spot we used to enjoy before we were married.  It did involve hiking, so I'm pretty impressed with both of us that we made it to the top,  despite our minimal energy.  It was definitely worth the effort as we enjoyed the gorgeous early morning view!

We spent almost the whole afternoon on the lake!!  Another favorite for me.  Basking in the sun and actually swimming for the first time this summer.  The kids both got in the water, although we did see a few tears from J.  He wasn't sure he liked skiing on the big disk.  Papa and Grandma's boat is always a fun treat!  

Abby seemed to love the water, she was so relaxed and even kicked her legs a little. (more pictures to come)

Now we are home back into our routines.  This week we hope to hear back from the surgeon about Abby's upcoming surgery.  Long story made very short, we are expecting that Abby's file is now containing all the necessary missing pieces for the surgeon to examine.  I left a message for his nurse this morning.  So now we wait to speak with them again.  Hoping for a more complete, encouraging conversation this time.

It's difficult looking forward to surgery... not because we want it, but only because we feel that Abby needs it.  She isn't thriving on her GJ feedings and continues to lose skills that she seemed to enjoy just 1 year ago.  It brings so many mixed feelings.  Dread of surgery and hope of healing.

Thanks for remembering her!

Fever = ER for Abby

This weekend we had the privilege of a visit from Grandma and Papa!  While Patrick and I worked on our "almost remodeled" bathroom, Josiah and Abby played with G and P.

Saturday morning Abby woke up with a fever and some coughing.  We started loading her up with Motrin and Tylenol, trying to keep her hydrated and comfortable.  From past experience I went ahead and pulled her Diastat (emergency seizure med) out and left it sitting out on the kitchen counter... easily accessible. 

She had a restless night and coughed a lot.  Trying to keep her fever down we set the alarm to give Motrin/Tylenol through the night.

Sunday morning she still had a fever with some jerky movements.  Eventually the jerky movements turned into rythmic twitches of her lips; which turned into twitches of her left hand, and arm.  With in about 30 minutes of this pattern, including swiping her VNS every 3 minutes or so (which temporarily stopped the seizure), these focal seizures turned into general convulsions.  Fortunately we were ready this time with a new plan!

As soon as the seizures turned from focal to general we dosed her with the Diastat, made the necessary phone calls to her doctors, and loaded her into the van.  By the time we left the house (7 min after Diastat) her seizures had stopped and she was totally out of it.  We drove to the ER as instructed and calmly went through all the registration procedures.  It was really nice not being in a huge panic, running into the ER with Abby still seizing out of control and the staff pouncing on her.

Once she was settled in a bed and hooked up to the monitors we sat back and relaxed for the most part.  Abby slept, and they agreed to not stick her for blood work and IV fluids unless it became necessary.  It was the most organized and easy going trip to the ER we've ever had.  The neurologist wanted to keep her until the meds wore off (4 hrs), but then she spike a high temp (104) so they kept us another 2 hours to make sure she didn't seize again.  We left the hospital around 6 pm, just in time to be home with our family to enjoy a nice dinner together.

Today we met with our neurologist in her office for a scheduled appointment.  Basically we talked about yesterday's event, confirmed our plan of action, addressed her medications again, increased her VNS settings and discussed her reflux symptoms and requested a letter of release for surgery.  She told us it is very common for surgeons to ask for a neurology release before having surgery.  This made us feel better.  

We learned something new too.  She said Abby's VNS will have to be turned off before surgery b/c of a tool commonly used to cauterize that would influence the VNS function.  It is simple to turn off by using the wand also used for dosage setting.  It will be done by a neuro nurse practitioner at Children's before surgery, and then will be turned back on after it's over.  Glad to know that!

We also found out she has lost more weight.  She's down to 12 kg (26.4). 

Then we discussed the possibility of a port placement for future blood draws and IV meds/fluids that might be needed.  She explained the risk of infection that comes with a port placement would also put the VNS at a much higher risk for infection.  If the VNS becomes infected it would most likely have to be removed.  This new insight drops the need for quick IV access down a few notches on our priority list for Abby.  We might reevaluate in the future if things change, but for now we are glad to have this decision made.

Poor Abby is still pretty miserable.  Her fever is down some, but she is coughing a lot and is also now vomiting.  Today hydration has become our focus and just trying to keep her comfy.

Sickness sure is a drag, but at least we are home!