A Wonky Kind of Beautiful: some favourite asher pics from the picnic. for the rest of the pics, check out the link in the previous post

Monday, August 25, 2008

some favourite asher pics from the picnic. for the rest of the pics, check out the link in the previous post

this past saturday was the 2nd annual CHD family picnic. this was organized by the CHD support group i'm in on facebook. it was a great day, full of chicken burgers and hot dogs from Maple Lodge (and provided free of charge by CardiacKids, from SickKids). they also brought a NASCAR car (mark dilley's car, for those non-nascar folks who don't know, lol). all in all, it was a great day. the kids all had a blast playing together, and it was so nice to spend time with other parents who know from personal experience what this life is like.

here's some of the best pics of asher....

asher's bum.

jodi lin, ryley, asher, hunter. one of these kids has their own original healthy heart. the others are single ventricles and transplant. other than asher (duh!), can you guess which kid has which heart? betcha can't! and that's the best thing about this picture, if you ask me. :)

asher, trying to grab my camera.

asher grabbed my camera.

asher and dominic. 2 single ventricles, neither of whom seems to understand this.

it really was a wonderful day. asher made a new girlfriend, dominic's older sister jodi lin. yup, it's love, folks, but i don't think i'll be publishing those somewhat scandalous pics here, thank-you very much. they're in the FB album, though. lol anyhoo....

great day. thank-you so much, jenaia, for organizing the day. it really was wonderful to finally put some faces to the names and stories we read about on the wall and discussion boards. can't wait till next year! :)

2 comments:

AnnMarie Brown said...: so love the bum picture. :); August 26, 2008 at 10:11 AM
Ryan & Brytten Pettit said...: I would love to talk to you, my son has HLHS and right now we are trying to figure out way he has low t-cells. Sounds like we have alot in common.
teagandashpettit.blogspot.com
Heart Hugs- Brytten
prettiebryttie@gmail.com; August 30, 2008 at 1:32 AM

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Inspiration, thy name is Asher

Little Asher was born December 2, 2006 with a rare and severe congenital heart defect known as Hypoplastic Left Heart Syndrome, or HLHS. (In the simplest terms, this means that he is missing the parts of the heart that pump and carry blood out to the body.) He also has epilepsy, problems with his kidneys, and a weak immune system. He has survived feeding and GI issues (and has now been tube-free since January, 2010), sepsis, several staph infections, and heart failure many times over.

In his short little life, he has already made it through 28 hospital admissions and 13 surgical procedures (ten cardiac, three of which were open heart). He has good days and bad days, but still he perseveres. He really is the bravest, strongest, toughest person I know. He's such a trooper - the stuff he puts up with on a day-to-day basis would astound you!

We are all really blessed to have him in our lives. He lights up every room he enters, and you really can't help but fall in love with him the minute you meet him.

Asher's conditions (i can translate and explain, upon request)

severe HLHS (severely hypoplastic left ventricle, mitral atresia, aortic atresia, severe arterial stenosis, severe COA, restrictive ASD, right ventricular hypertrophy, PA hypoplasia, RPV hypoplasia)
congestive heart failure
hypertension
Sick Sinus Syndrome, intermittent AV block
symptomatic bradycardia, junctional escape rhythm
pacemaker
tachycardia (due to CHF and stent material in AV node)
post-hybrid, post-ASD stent
post-Norwood/Glenn shunt
post-hemi Coles procedure, with PA plastes and atrial stent removal
post-Fontan
Post-Traumatic Stress Disorder (PTSD)
?epilepsy
failure to thrive (FTT)
immunocompromise (T-cell deficiency)
dysphasia (difficulty swallowing), causing aspiration
recurrent UTIs
bilateral nephrocalcinosis
renal dysgenesis (underdeveloped kidneys)
history of hypo- and hypercalcuria
dilated renal pelvis (left kidney)
severe GERD
?DiGeorge Syndrome
vagus nerve injury
enteral feed dependency (NG-tube, then GJ-tube, then G-tube) (resolved)

A Lexicon of Asher. words/phrases from life with Asher.

The distal anastomosis is then constructed to the proximal innominate artery using standard anastomotic technique. can you believe, i actually understand this sentence. i don't know the exact ins and outs of "standard anastomotic technique," but basically, as long as you know how to attach a shunt, that's what you do at the far end. that's what all that means.

less than optimal communication. probably one of the most brilliantly diplomatic phrases i have ever heard, thank-you very much, dr atkison. in fact, when he first said it, my jaw hit the floor. you know how much i love language, and this has to be among the best.

freaxious. that horrible combination of emotions, which i suspect may be specific to SN/heart parenting: fearful, dreadful, anxious, nauseous.

it's just a drive in cincinatti. dr caldarone had never dug a stent out of an atrial wall before. i said, "oh, that's not what a mom wants to hear the day before surgery!" he looked at me, smiled, and asked, "ever been to cincinatti?" i said, "um, no..." "but you drive a car, right?" "um, yes..." (totally not seeing where this is going.) he asked, "so would you feel comfortable driving in cincinatti?" "um, i guess so..." (totally confused by now). he responded, "well, this is just a drive in cincinatti." nauseating and funny, all at the same time! LOL

dunno. docs say this a lot when discussing asher.

hopefully, this will be the last surgery he ever needs. these words were uttered by our (usually) delightful and genius surgeon, dr caldarone, after the Fontan. when i bumped into him by starbucks in april, i said to him, "you totally jinxed it!!!" {shakes fist at dr caldarone} then he said these exact words again after the pacemaker insertion. because, you know, when it comes to asher, why wouldn't you tempt fate a second time? {wishes that readers can hear laughter and sarcasm on a blog}

no, no, there's always a reason. we may not be able to figure out what it is, but there's always a reason. once again, dr caldarone, defending himself (or trying to) when i accused him of jinxing asher.

i'm frightened, actually. that was a doc. a smart doc. he has learned a valuable lesson. it makes for easier trips to cardio when the doc knows what asher is capable of... and prone to.

asher. also, asher-ish. adj., as in "asher pink" (pale with faint blue undertones) or "asher healthy" (no trips to emerg in the past two weeks) or "asher-ish complications." he's his own adjective. nuff said.

A Wonky Kind of Beautiful

growing up so fast!!

Best. Quotes. Ever.

so so true

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Monday, August 25, 2008

some favourite asher pics from the picnic. for the rest of the pics, check out the link in the previous post

2 comments:

that's right. he's just. that. cool.

Inspiration, thy name is Asher

Asher's faves

Asher's conditions (i can translate and explain, upon request)

A Lexicon of Asher. words/phrases from life with Asher.

Heart Journeys

Followers

Global Asher

Ways to help (not just us, but any family in times of trauma)

if you don't laugh, you cry

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