Monday, October 28, 2013

Hayleigh: She Walks!

She Walks! 


Step by step, Hayleigh is getting there.  Her room, once full of machines, is starting to get a bit barren.  ECMO gone.  Ventilator gone.  IV drips gone. She has moved from 20L oxygen (strength of flow through nasal canula) a week ago to 0.50L today.  She eats solid foods, has started physical therapy, and constantly talks about ‘getting out of here.’  “Daddy, what do I need to do next to get out of here?”  Love the determination of this girl. 

She is even starting to do homework.  Her class is reading ‘Our Town’ in school and so she has started to read this classic, Pulitzer Prize winning Thornton Wilder play.    A Yale professor writes the foreword in the edition we are reading, and something very interesting jumped out at me this morning.... 

He writes about reading ‘Our Town’ as a teenager and being bored.  Its ‘old fashion values’ no longer resonate with a modern public that knows far more than Wilder knew.  The professor confesses he had seen the play a few times, thought he knew it, and didn’t think much of ‘Our Town.’  

Then he went to an ‘Our Town’ production at the Lincoln Center which remains his most memorable theater going experience of his life.  He writes “I was so mesmerized by it subversive power, so warmed by its wisdom, so shattered by its third act, that I couldn’t believe ‘Our Town’ was the same play I thought I had known since childhood!”

He rushed home to re-read ‘Our Town’ only to find that what he had seen on stage was very little changed from what he had read and seen all those years before.   And then it dawned on him…what had changed was HIM.  He had enough life experience by that point in life that he finally understood what was so great about ‘Our Town’

Why did this strike me so significantly this morning?  Because if you replace ‘Our Town’ above and insert ‘The Bible’ you will have my story.  Maybe its your story too.

The Bible was boring to me as a teenager and young man.  It seemed so old fashioned and out of place in our modern world, so trite compared to the wisdom of the world.  I knew the stories.  I had been to church hundreds of times.   But the Bible never really interested me. 

And then the thunderbolt happened to me on a bumpy ride after serving with our church in the slums of Kenya.  While the experience in the slums opened my eyes, the thunderbolt that shifted my faith came from a scientist.  

Because evolution was taught as fact, not theory in all my schools….and because the logical extension of evolution is that ‘there is no God’ I asked this scientist “How are you a Christian if science is so clear that there is no God?”

And she looked at me and said “Andrew, I’m a Christian BECAUSE of science!  I came to believe in God during my molecular biology courses in college.  When I analyzed all the chemical reactions that have to take place for even the simplest of simple cells to live, I knew there was no possible way all those reactions could have happened by chance.  Anyone who believes that life just spontaneously started needs to take a course in probability and statistics and really study molecular biology.  I knew then there had to be a God.”

And that led me to read books by respected scientists like Jim S. Francis, leader of the Human Genome Project and currently Director of the National Institutes of Health. 

His book “The Language of God” irritates fundamentalists and atheists alike and for that reason alone is a book that should be read!  He believes in evolution but also very clearly outlines why he believes God exists as the Creator of life.  That book helped me get over my ‘science / evolution’ block toward God. 

I stopped reading the Bible as a science book and started reading it as a letter from God to us.  And that 12 inch journey I wrote about last week of Jesus moving from my head to my heart started to happen. 

And suddenly the Bible was TOTALLY different to me…..  I was so mesmerized by its power, so warmed by its wisdom, so shattered by its sacrificial acts, that I couldn’t believe ‘The Bible’ was the same book I thought I had known since childhood.  

It became alive.  I became alive!

About 2 years ago when this process really started changing me, our church did a series of videos from regular families in the church.  I thought of it today and chuckled at some of what I saw.  I hope it brings a smile to your face as well....



As noted in the video, I tried many methods but nothing 'stuck' for the longest time.  The 'start in Matthew' process referred to began for me in the summer of 2011.  The emails began then too and this year our family went through Scripture Union's E100 Challenge during our mission trip.  

My prayer tonight is everyone reading this note has that ‘Our Town’ experience with ‘The Bible’   

God bless,

Thursday, October 24, 2013

Hayleigh: She Speaks!

A 10 second message from Hayleigh......



""Hi I'm Hayleigh and because you prayed I'm here.  Thank you for your prayers.  Bye!"

Hayleigh came off the ventilator on Monday.

Monday night she asked me to get in bed with her and sleep there.  So sweet....but I didn't want to rip out any of her medicine lines so I held her hand and slept in a chair by her bed.

On Tuesday October 22 we had our entire family together for the first time since Monday night September 30.  Actually, this is the first picture of all of us together since Isaiah was still in Rachel's womb on September 30!


Does Rachel look great or what?  I am the luckiest man in the world for sure....

Before the family arrived, the medical team put Hayleigh on this mask called a CPAP because it  opens the lungs better.  She wore the mask throughout Tuesday.  On Wednesday and Thursday she wore canulas through the day and CPAP at night.

When she saw Isaiah she reached for him....and then they both fell asleep (she was still on quite a bit of meds during our visit so she was sleepy off and on over the 4 hours everyone was there)

Her friends at school made a beautiful book that we read to her (along with many cards).

The book is a series of pictures with her classmates spelling out in sign language, "We Love You Hayleigh"  Such a good group of kids....

AJ loving on his sister...

After the kids left she sent her first email (me typing, her whispering her message) to her friends in her class.  That night she asked about how far along they had progressed in math and Spanish and wondered what was her topic for the 5 page report that is due soon.

The doctors were very impressed she remembered these kinds of things.  I kept quiet realizing the miracle of my daughter actually talking about homework (that is my lame attempt at a joke).  The response back from her teacher was perfect the next morning "Your assignment is to get better, so much better that you can leave that hospital, come home and come to school.  We will figure out how to catch you up on other assignments when you have completed this first, most, most important assignment."

Wednesday was her first day getting out of bed (not pictured).  She coughed a lot on Wednesday (which is good as she needs to clear her lungs).  She took her first sip of water but was still showing some signs of withdrawal so the medical team really just paused everything to give her a day of rest.

She asked me what had happened as the last thing she remembered was the helicopter ride to the hospital in Maine and a few details of our time together in Bangor.  So, I walked her slowly through everything that had happened including her near death and being put on ECMO.  She joked "Well, now that I've been on ECMO twice maybe I should get my own machine and have it handy 'just in case'  I could become someone who runs ECMO and show others there is no need to be afraid!"  I also read her a TON of cards on Wednesday.  I call her bag of cards her 'fan mail'....and she blushes when I say that so I say it a lot.

Thursday (today) was what everyone is referring to as the "Hayleigh Spa Day"   She started the day with a hair wash and conditioning.  Then she moved to this chair.  I sat in the chair next to her and she totally ignored me (as teenage daughters are proned to do) for about 4 hours while reading teeny bopper magazines and listening to her ipod.   I actually felt joy in being ignored this way as it meant I definitely had my daughter back!!! ;)

The pink blanket is a prayer blanket from a church in Frisco, Texas.  They prayed for her and tied knots in the strands around the edges as they prayed.

Hayleigh's new friend Megan came in and painted her nails pink.  They had a great time talking girly stuff as Megan is just out of college and still 'cool' to a 14 year old girl.

Thursday afternoon she got her first real PT / Rehab session.  She had just fallen asleep when the physical therapist, Liza, walked in.  I had told her earlier in the day that she couldn't leave the hospital until she got off all her meds and was strong enough to walk.  So, when she realized who Liza was she woke up and frankly amazed everyone with her work effort.


After PT, it was back to ignoring dad and using the surgical light above the bed as a reading light for her teenager magazines.

Finally, she had her first solid food today (pudding) as well as a small can of Ginger Ale.  She is making GREAT strides.

Today was a GREAT day.  From Psalm 9: 1-2....

I will give thanks to you, Lord, with all my heart;
    I will tell of all your wonderful deeds.
I will be glad and rejoice in you;
    I will sing the praises of your name, O Most High.

God bless,

Andrew



Next Post:  http://tsfga.blogspot.com/2013/10/hayleigh-she-walks.html

Shoes for Kenya Kids:

Bone Marrow Registry:

Monday, October 21, 2013

Hayleigh: AWAKE!

A picture is worth a thousand words...


I know she closed her eyes on this one, but I love it....

I called Rachel and had her on speaker phone.  Hayleigh's first words were a whispered "Hi Mommy!"

I love this girl so much.  Can't wait to have her back home!

Sole to Soul - Shoes for Kenya Kids

About a week ago I wrote a note titled 'What You Can Do'  Over the next few days Hayleigh will regain her voice and be more alert.  I would LOVE to tell her about the donations coming in to Sole to Soul and how those Kenyan kids who got brand new shoes only to lose them the next day in a big fire will be getting new shoes again.  If you haven't already done so, please take a moment to make a tax deductible donation.

Click now on this link to donate:
www.cmfi.org/shoes and then click on the 'Give' buttons for the campaign. 

Bone Marrow Drive in Nashua NH

The other idea presented in the note last week was a bone marrow drive to help save the life of a dear friend of our family who needs a bone marrow transplant.  If you live anywhere near Nashua, NH there will be a bone marrow drive at our church:

Sunday October 27
1pm to 4pm
Crossway Christian Church
503 Main Dunstable Road
Nashua, NH 03062

If you happen to be looking for a church home, there are services at 8:00am, 9:30am, and 11am.

If you do not live in the area please consider getting registered or hosting an event in your area:

http://www.bethematch.com/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/

http://www.bethematch.com/Support-the-Cause/Participate/Host-a-donor-drive/

Psalm 150

Let All Things Praise the Lord

150 Praise the Lord!
Praise God in His sanctuary;
Praise Him in His mighty firmament!
Praise Him for His mighty acts;
Praise Him according to His excellent greatness!
Praise Him with the sound of the trumpet;
Praise Him with the lute and harp!
Praise Him with the timbrel and dance;
Praise Him with stringed instruments and flutes!
Praise Him with loud cymbals;
Praise Him with clashing cymbals!
Let everything that has breath praise the Lord.
Praise the Lord!

SPREAD THE GOOD NEWS!!!!

God Bless,

Andrew, Rachel, Vienna, Hayleigh (not pictured below but will be soon!), Sarah, AJ, & Isaiah

Shoes for Kenya Kids:

Bone Marrow Registry:

Sunday, October 20, 2013

Hayleigh Report and the Homefront

Door into Hayleigh's Room.  Nurses moved the picture from above her bed to here....nice!
Hayleigh continues to progress toward health.  On Friday she was completely weaned off the nitric oxide and did just fine.  That machine is now out of her room.  The medical team continues to wean her off things like morphine and various sedatives.  Ventilator supports continue to be lowered and there is now talk of extubating her if things continue to go well.   Thank you for your continued prayers for complete healing and returning our Hayleigh to our family healthy and whole.  

==========================
UPDATE SUNDAY 1145AM -- SETBACK AND PRAYER REQUEST

I typed everything else in this letter Saturday night.  Unfortunately, Hayleigh had her first backward step in this recovery process on Sunday morning.  

The medical team had decided based on her progress that they were going to extubate her today (take the tube out of her throat).  She passed all the 'tests'  throughout the night.  However, one of the withdrawal symptoms of being taken off morphine and other drugs is vomiting   She did that in a big way this morning and aspirated vomit into her lungs.  Vomit in the lungs can be a very bad thing.  

Since the tubes were still in place they were able to suction as much as they could, but we are asking for prayers that this aspiration of the lungs does not damage her lungs, create another infection, or set back her progress more than a day.  She will be remain intubated for the foreseeable future.  

Thank you for your prayers.

===========================
(back to what was written Saturday....)

I sleep in Hayleigh’s room at the hospital, and Friday morning I awoke to alarms going off.  She decided it was time to get up and get out of her bed.  She was literally sitting on the edge of the bed, feet on the ground with her hand on the tubes in her mouth trying to pull them out!  She is quite the fighter. 

That episode earned her a new bed which can be moved into all kinds of different positions including helping her get in a sitting position.  More importantly it finalized the decision to get her off nitric oxide.  One of the medical team members wanted to keep her on it a couple of more days at a low setting.  If she pulled her tubes out there was a greater danger if she hadn’t been weaned off the nitric, so they went ahead and got rid of the nitric oxide. 

It was interesting to watch the team switch out the bed (old bed out in the hall, new bed coming in, Hayleigh hanging on the scale!). 


I nominate this poster from the teachers at her old Elementary School as the most creative ‘card’ she has received (yes, those are real candy wrappers...):



On the home front…

Rachel and Isaiah arrived home:


This time of year is sensational in our hometown:



Vienna got her first starts in field hockey and her team dedicated their last games to Hayleigh.  Thanks girls! 

Sarah ran for her Elementary School student council….and was elected President!  Rachel played her the Presidential March music the next morning when she came down for breakfast ;)



Baby Isaiah continues to grow….and Rachel is in full swing with her picture ideas....



One of the few moments of sleep for Rachel…


I went home Saturday morning to take AJ to his soccer game.  We had team pictures today, and I’m the coach of the team.  But I didn’t think to get any pictures of the event itself L 

But here are some pics of AJ the past few days…




As mentioned in my last post, Aunt Gretchen arrived this week and there is NEVER a dull moment when Gretchen is in the house.  Here is what Rachel posted on Facebook Friday…

Gretchen Powell volunteered to take Sarah Rachel to school so that she could go to Dunkins for a coffee....Well, after a few drive-by's she got to Dunkins, ordered, went to the car and heard sniffing...she turned around and a HUGE BLACK dog was behind her...scared her to death and she realized she wasn't in her car. So, she got out. A man was watching her and he suggested she go to the other side of the building where there was another parking lot. Once at the other side of the building, she realized she didn't have her coffee....She left it in the wrong car LOL...So she hustled to the back of the building to see the car driving away. Gretchen managed to flag the car down, admitted to the lady that she had been in her car and that the coffee in on the seat was hers.....Oy! All in the first 24+ hours....Stay tuned more definitely to come  Gotta love the Aunt Gretchen - she is better than cable any day of the week!”

We love Aunt Gretchen! 



Finally, I prayed a bit last week about when Hayleigh will be home and think I got an answer.  Sarah proceeded to tell Rachel “Well, God told Daddy she would be home on xx date.”  That’s not exactly what happened….just something peculiar happened on the day I prayed about when she would be coming home.  What is most important is that she get the best care possible (which is going to happen at Children’s Boston).  So, while I’m anxious for her to be home I’m not willing to rush anything.

Prayer requests:
1.    Hayleigh healthy and whole in every way
2.    AJ return to health (he has a cold and is miserable / super grumpy…and probably a bit irritated at us for shipping him around for about 10 days)
3. Updated prayer request Sunday morning...pray that the setback described above is minor and that no infection or damage to the lungs occurred.  

Thank you again for your thoughts and prayers.

God Bless,