A Lil' Boy's Journey to Live….

Archive for August, 2011

What is CHD?!

What is a CHD? You passed me in the shopping mall…(You read my faded tee)

You tapped me on the shoulder…T hen asked…`”What’s a CHD?” I could quote terminology…There’s stats that I could give… …But I would rather share with you…A mother’s perspective. What is it like to have a child with a CHD? it’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?…It’s monitors and oxygen tanks… It’s a constant reminder…to always give thanks… It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held her…(I’d waited so long) It’s knowing that I need…to help him grow strong… It’s making a hospital…home for awhile… It’s seeing my reward…in every smile. It’s checking his sats…as the feeding pump’s beeping… It’s knowing that there… is just no time for sleeping… It’s caths,x-rays and boo boos to kiss… It’s normalcy…I sometimes miss… It’s asking…do his nails look blue? It’s cringing inside… at what he’s been through. It’s dozens of call to his pediatrici an… (She knows me by name…I’m a mom on a mission) It’s winter’s homebound…and hand sanitizer… It’s knowing this journey…has made me much wiser. It’s watching him sleeping… him breathing is steady… It’s surgery day…and I’ll never be ready. It’s handing him over…( I’m still not prepared…) It’s knowing that his heart… must be repaired… It’s waiting for news…on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends… with whom I’ve connected… It’s the bond that we share…it was so unexpected… It’s that long faded scar… down my child’s small chest… It’s touching it gently…and knowing we’re blessed… It’s watching him chasing…a small butterfly… It’s the moment I realized…I’ve stopped asking…why? It’s the snowflakes that fall…on a cold winter’s day… (They remind me of those…who aren’t with us today) It’s a brave little boy…who loved Thomas the train… Or a special heart bear…or a frog in the rain…. It’s the need to remember…we are all in this plight…. It’s their lives that remind us… we still need to fight! It’s in pushing ahead amidst every sorrow… It is finding the strength to have hope for tomorrow. And no…we’ll never be the same… It’s changed our family… This is what we face each day… This is…a CHD
~ MLH National Organization received this from Shannon Arnold

Routine visit to see Dr. Hanna..

Not to much to report on today’s visit to CHOP.
Riley’s next appt. is September 9th for pretesting and to visit the lung transplant team.
Then he will have his next cath on September 12th. Crazy!
There apparently was a Very Good offer over the past weekend for Riley but the heart was a lil small to accept.
Personally I’m Glad they didn’t call. We would have left the shore only to be sent home again! So Happy that didn’t happen!
Next Time….


Wonderful Weekend in Ocean City…

A Wonderful Long Weekend spent in Ocean City Thanks Once again to the Kindness of Strangers! Tara and her Mom Maria who are friends of my sister, Terry, also wanted to be a part of Getting Riley to the Beach! They opened their Home to Us for Four Days!! Beautiful People!! Thank You Just Doesnt seem Enough ♥


Riley has made it Back to the Beach…


Beautiful Words that Help to Reason as to Why God Would Bring a Sick Child into the World…

I’ll lend you for a little time a child of mine,” He said, “for you to love the whole while he lives. It may be six or seven years or twenty-two or three, but will you, till I call him back, take care of him for me?” “He’ll bring his charm to gladden you, and should his stay be brief, you’ll have his lovely memories as solace for your grief.” “I cannot promise he will stay since all from earth return, but there are lessons taught down there I want this child to learn.” “I’ve looked this wide world over in my search for teachers true, and from the things that crowd life’s lane I have selected you.” “Now will you give him all your love nor think the labor vain, Nor hate me when I come to call and take him back again?” “I fancied that I heard them say ‘Dear Lord, Thy will be done, for all the joy the child shall bring the risk of grief we’ll run.’ ‘We’ll shelter him with tenderness; We’ll love him while we may, and for the happiness we’ve known forever grateful stay. But should the angels call for him much sooner than we planned, We’ll brave the bitter grief that comes and try to understand.'” Borrowed from: Simone Merrell

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Next Cath is scheduled…

Sooo… Transplant hasn’t happened yet so we have scheduled Riley’s next Cath for September 12th. Crazy! Of course transplant could still come before that.. We have had 3 calls in 3 months but if not to the next Cath we go!

Behind Your Scar…. By ~ Stephanie Husted ~ Beautiful!

Behind your Scar Sometimes I have those “moments”, When I think…life’s just not fair, Then I think of all you’ve been through, And I see the scar you bear. A faded line right down your chest, Made with such careful precision, We wanted you to have a chance, Could there be any other decision? And so I trace that “perfect” scar, Made with the utmost care, And I realize there is purpose, Behind this scar you wear. What have you taught us? You’ve taught us how to face a storm, (Some things are just out of our hands) Life has no handy guidebook, (Things don’t always go as you’ve planned) People come into our lives, (Sometimes it is just for a season) But God brings them into our lives, (And I know that He must have a reason) Normal, uneventful days, (The kind that we always hoped for) These are the days I say, “Wow God”, We just never know what lies in store. If I can place a feeding tube, Without even getting distraught, Perhaps, maybe, I might be… Much stronger than I thought. It’s okay to be afraid, And it’s alright to cry, It’s okay to feel lost sometimes, It’s even okay to ask…why? You face life with courage, (Knowing God set you apart) Every little thing you do, You do with all of your heart. No crystal ball exists for us, (To see us through each strife) We only have one wish for you… An ordinary life. You’ve taught us to love one another, (Helping eachother to cope) You’ve taught us compassion for others, You’ve taught us to never lose hope. You already have quite a story, Which you can someday share, And I can see it’s beauty, Behind that scar you wear. ~Stephanie Husted

We are Home :(

Seems as though the 3rd time Wasn’t the charm for Riley! Hard to believe that we are home.. Again!
Thank you All for your Love and Support for Riley and Our Family! The Journey continues….

Still waiting…

Still waiting! Possible OR time is around 2am but they were suppose to be taking the donor in the OR at 10:30 and we haven’t heard anything! So.. We wait! Riley is sleeping! I just Pray we aren’t sent home at the end of all this.. ♥

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