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Ashlyn Weisler is the Fairy Princess

Ashlyn's magic fairy head quarters discovered in yard.

Fathers Day is a day where those who wish can honor and give thanks to their earthly Fathers for all they did for us, and all that they sacrificed so that we were able to become who we have become (so far).    It can also be a day where we express our gratitude to a loving Heavenly Father for all that he has done for us… including the gift of His Son that gives us hope, purpose and help on our journey of becoming.

I love being able to be a Father and yesterday my family expressed their thanks to me.  Then I expressed my thanks to them for the privilege and blessing of being their father.  Then we jointly expressed our thanks to Him…who has given our family so very much.

It seemed like a perfect time to finally post this video that Joshua, Brittany, and Jacob put together of  Ashlyn’s hospital experience and her miraculous recovery.  A recovery that we attribute directly to the merciful & divine intervention of a loving Heavenly Father in response to the faithful and fervant petitions of so many of His children on her behalf.   At the very end…Ashlyn has a special message she recorded just for you… I hope you will enjoy it, and feel the spirit of it.  I think the kids did a great job on the video…what do you think?

Kirk Out

 
Ashlyn Weisler
Look Dad No Tube!

I am way over due to offer an update on our Ashlyn. The last time I posted we had come home… she with her tube, (she called it a tail) was running around with the tail flapping in the breeze and her using it mostly as leverage to get some additional attention.  Four-year-olds know how to work it.

The older kids have been working on a video storyboard of Ashlyn’s experience.  They keep telling me it is “almost done”.  What I have seen of it…I really like and I was hoping to share it with you guys in my next post about Ashlyn. But I can’t wait anymore to give an update.  (But maybe it will be finished next week..I promise I’ll let you know.)

Ashlyn learns to fly a kite... fun day
Ashlyn Learns to Fly a Kite
I’m doing it Dad…I’m doing it!

 

Sometimes your up…and sometimes your down
 Sometimes you hold on to things..or they hold on to you.  And sometimes you need to let go of things…and they need to let go of you.

So here is the latest…  Her tail/tube has been removed for about 2 weeks now.  Her x-rays show a miraculously recovered lung with fully 75% of her lung looking so healthy that you would be hard pressed to even find scar tissue or evidence that it collapsed.  The remaining portion will continue to heal more slowly.  But because children continue to grow lung tissue into their 8th year of life we have every reason to expect her to make a full and complete recovery.  She can be a track star like her mommy was if she chooses too.

So what do you do with a miracle?  You recognize it, your celebrate it, you pray that you will never forget it, and you continue to strive to live in a manner that truly shows your gratitude and love towards a merciful and loving God.

What do you do with your miracle child?  The same thing you try to do with your others.  You look at them,  you love them, teach them, pray for them…hope for them, hurt with them, encourage them… and help them in any way you can to prepare for the future that they will help to create and the families they will someday have.

That of course includes flying kites, planting gardens, doing yard work, hugging, playing, dancing and all manner of chores and family activities.  

What is Ashlyn doing right now?   Her brothers and sisters are in school, Rebecca is at the gym and I can hear her up in her room singing and talking to her stuffed animals and dolls.  Something wonderful is happening up there…and soon I will sneak up and try not to be noticed so I can watch an imagination creating a world of wonder.  Then I will whisper another prayer of gratitude and come back down to my office feeling wonderful inside. 

Want to color with me dad?

And several times a day she’ll pop in my home office to check on me.  Sometimes she brings crayons and we hang out… sometimes she just crawls in my lap for 10 minutes then get’s down and runs off.  Other times she bursts through the door at full speed, runs around the desk, pulls me down, hugs my neck, and kisses my cheek, then runs off yelling… “I love you Daddy…you’re the best.”  When she does that I feel like I am my best…and I want to be even better.  And if  faith, prayer, hard work, and time…can help Ashlyn get better… then with those same ingredients … I can get better too.

   “Look Daddy.. I have ladybug fingernails!”

Ashlyn seems back to the abnormal normal we all remember.

It’s been at least 2 weeks since I have posted an update on Ashlyn.  I’ve been traveling and training in Nashville and Las Vegas.  Everywhere I go the kindness of people who approach me to inquire about Ashlyn continues to both humble and inspire me to be a better man.

Ashlyn continues to heal…or at least that it what we think is happening. She is running around the house like nothing ever happened.  She still insists we play charades every night (by far her very favorite game).   Her impression of a dead snake, or a snake dying is my favorite.

With chest tube dangling she rides her tricycle, jumps on the tramp, climbs on the counter to sneak cookies and seems as engaged in all the stuff 4 yr old stuff she was before.  She is slowly gaining some weight back (feeding her lots of ice cream seems to be working).  Except for the obvious medical device attached to her… you wouldn’t know she was sick at all.

Tomorrow we have an x-ray and doctors visit to see how her collapsed lung has been responding to all of her running around…and all of your faith and prayers.   We are all, Ashlyn included, excited to go see the doctors and hopefully get her “tail” removed.

Then the next step will be to begin paying for it all… but hey, one step at a time.  Here is a picture of her doing an impression of Katara, a Water Bender.

Ashlyn the Water Bender

I’ll post again as soon as the doctors tell us what is next to do … we are so grateful there there is a next thing to do.  We really love having her around to teach us Water Bending skills.  It’s pretty much a lost art.

Kirk Out

Ashlyn is still on the mend…with a couple feet of tube still draining stuff out of her chest cavity.  It feeds in under her right arm and goes in almost to her sternam.  It’s not comfortable and even painful…but she’s getting tougher everyday.  Less pain medication than ever… and usually not unless she’s been very active and really pushed herself.   But from every 4 hours we’re now dosing for pain only once or twice a day.  WOOHOO!

She’s taken to calling this tube “her tail” and is learning how to live with it…and how to use it to get attention.  No surprise she’s 4 and she’s mine.  So you can bet she’s milking that tube like a dairy cow to get whatever extra attention she can get.  And we are so happy to have her home that we tolerate it, and give into it, …but we also know you can’t constantly “feed the beast” no matter how cute she is, or how happy we are to have her home.  Last night was a bit of a  fight… that I thought I had won…but actually lost while I was sleeping.

Ashlyn went to bed whining pitifully about wanting to make some brownies.  It was almost 11:30 PM so don’t think me heartless for saying NO but assuring her with “We can make some tomorrow”.  I think she may have dreamt about brownies all night…  This morning, she came off of her pillow like a Pop-Tart out of the toaster with a big smile saying, “It’s tomorrow Dadddy, now we can make brownies!”

My “We don’t have brownies for breakfast”  speech fell on deaf ears… and her smile was so big, and so cute… that after a couple of orange slices a piece of peanut butter toast, –  Big Sister Brittany and Ashlyn were mixing it up together.  I didn’t even get to lick the bowl.

  

The brownies weren’t the only sweet smelling thing in the house today.  There was also Lenny the Lamb. Before I describe Lenny let me say this… ;  There have been so many generous gifts, cards, blankets, toys, and all manner of sweets and treats.  Including candy all the way from the UK and M&M candies that actually had Ashlyn’s picture on each M&M?!  (I’m still not sure how that was done.)  The cards, messages, meals and prayers are a constant subject of discussion and a very real ource of joy and wonder for our family… and I wish I could express to each of you our deep grattitude. 

Ashlyn with her Scentsy Buddy - Lenny the Lamb

The reason I single out Lenny the Lamb is because of what Ashlyn asked me to do with it today.  It was sent to her by Dan Greely from a company called Scentsy Inc.  Basically it’s a super soft, stuffed animal with a zip pocket in the back that you put fragrance packets in.  So Ashlyn opens up the box, squeels with excitement, names it, and hugs it.  With the hug she gets a huge wiff of the wonderful “Black Rasberry Vanilla” scent coming out of it and wants to share it with me.  So she holds it up me and with an eager smile and excitedly says,  “Smell its bum Daddy, it’s yummy.”    So I did… it’s just what parents do.  🙂

We have another month to go with this drain tube… and then an X-Ray to see if her lung is getting back to where it needs to be.  In the meantime we feed her, we play with her, pray for her, make brownies, blow balloons and smelling lamb’s bums.

That’s all for now… thank you again each one for your thoughts and prayers for our family and our Ashlyn.  We so appreciate you.

Kirk

Ready For Summer - Ashlyn Weisler
Ashlyn is not only ready to be well…she’s ready for summer!

I feel like I want to express something – but I have nothing new to say, or share or even request.  We are just so happy to have our Ashlyn home and that feeling has not dimmed, rather it has grown.  Our gratitude, which we may never be able to fully and adequately express has likewise grown.   We know that we (Ashlyn especially) still has a journey of healing ahead of her…but we are filled with hope and confidence and a measure of peace that truly “surpasses understanding.”

    I was trying to express to my Mom this morning how much I desire to thank everyone and describe to them how their prayers and faith were felt and experienced by our family…and how humbly grateful we were to be the recipients of such kindness, charity and service.  But people tell me they don’t want to be thanked…  rather they are just thankful, like we are, that Ashlyn is home and on the mend.

So we are thankful to be joined with and by the “thankful” … and we are hopeful because we are filled with HOPE that comes from the experience, the assurance, and the promise of what Faith in the Living and Loving God can bring…it we invite it, allow it, and actively pursue it’s refining path.

More pictures of Ashlyn to come…

We love you all – Kirk & Family

These last day and a half of having Ashlyn home as been almost as surreal as the last 31 days in ICU.  Except that this Surrealness is filled with an absolute and undeniable sense of humble grattitude, wonderment, relief, and JOY.  This picture taken just this morning has her holding her little chest tube device, which is wrapped in a blue surgical glove to catch the fluids and yuck that is still slowly draining from her chest. 
       This MacGyver rigged device is just one more illustration of how unique her situation is, how unique her being home is, and how uniquely aware we are of God’s divine hand in granting us this miracle.  A miracle we are determined to never forget.  That our Ashlyn was released on the day that was to be her surgery is not lost on us…nor is it lost on us that she was allowed to come home on Ash Wednsday… a day that will for us be forever remembered as Ashlyn Wednsday.
Ashlyn Weisler is Home

Ashlyn came home on Ash Wednsday...how perfect!

Weisler Kids & Royal Welcome

Princess is greated by King and her subjects.

From Here to Home in 31 Days

From Here to Home in 31 Days

Ashlyn Eve is HOME
Ashlyn Eve is Home…and it’s WONDERFUL

 Can we ever thank each of you for your prayers, fasting and faith exercised in behalf of our family?   Can we thank God enough for this miracle?  No, but we can try.  What is the very best way we can show God that we love him?  His son taught… “If ye love me, keep my commandments.”   We hope that our efforts at keeping the commandments and striving to be more like the Savior is seen by Him and by you, our dear friends, as an expression of grattitude for all we have been and continue to be given.

Love, The Weislers

In the briefest terms… Ashlyn was scheduled last week for a unique surgery today in an attempt to help a collapsed portion of her very damaged lung do something they didn’t believe it could do on it’s own.  This surgery was to have been a difficult one…but worth attempting rather than the final option of a partial lung removal.   The team of doctors wanted a week to prepare for the surgery (so they could talk to other doctors who had done similar surgeries on adults (none on children). 

That week of preparation proved to be a wonderful thing for Ashlyn because during this past week her lung has made some small but very significant progress …  it appears to be slowly healing itself.  While her lung may take months to fully heal… that it is healing at all was enough for the doctors to cancel today’s scheduled surgery.  They just gave us this news this last night… and we were so relieved because that could have easily been another month in ICU.  

They then began talking about the possibility of allowing her to come home (maybe within a weeks time) with a special valve attached to the remaining tube that still feeds into her chest cavity.  The lead doctor hasn’t sent anyone home in this manner in 15 years…and never a child.  Yet he thought the circumstance could warrant it.  

Then just an hour ago the doctors said we can go home!  Because there is nothing more they can do there.  So we have in less than 24 hours gone from a scheduled surgery, today…to coming home, today!

 What I really wish I could describe to each of you reading this is what it feels like to be the recipient of hundreds and thousands of daily prayers of people (most of whom you have never even met) combined with those whom you have.  It is a most wonderful and joyful experience. 

  On the one hand you wish your child wasn’t sick, you wish you weren’t sleeping and living in ICU…. and that you weren’t in the midst of the tubes, doctors and moments of absolute surreal-ness asking, are we really doing this?  And on the other hand there are extended undeniable moments of sheer joy, there have been measurable and immeasurable miracles each day and there is a sense of peace that surpasses understanding and provides a sense of comfort and confidence that would seem inconsistent with the circumstance…. but instead are actually present because of, and the most welcome companions to the circumstance.

 Probably more than you wanted to know… but less than friends like you deserve.

It is my belief that we are all, each one of us, participants in and contributors to miracles each and every day.   But because of the scales over the eyes of our understanding and because of the distractions and busyness of life we most often miss seeing the miracles.  Yet on rare occasions there are some miracles that are as undeniable as was Moses parting of the Red Sea….so the children of Israel could go home.  This is one of those miracles…and each of you have been participants and contributors.

… from a scheduled visit to an operating room to the warmth of a family living room…. in less than 24 hours.  

Even as I am writing this… our Ashlyn is being discharged from Egleston Children’s Hospital…and will soon be home.

Thank you for your prayers and thank God for the healing Grace of his Son… and the multitude of His tender mercies.

More later

Kirk