Ear Tubes Can Blow It....


Today Pip had 6 appts - Yep, 6...We were in the hospital at 9am till after 4pm...That's a looooong day for a little girl who wants nothing more than to practice walking or scoot on a dirty floor...To be trapped in my arms or in her stroller was not her idea of a good time...Add the blood work, contraptions going up her nose, instruments in her ears and removing/replacing her tiny contact lens and well I'd say today was a D+...


For me, having to hold her down, making sure she doesn't move for some of these procedures when she's screaming and looking at me so confused as to why I'm letting people hurt her, kills me....


So on an already tough day, I was then told that Pip will need to have another surgery...Bloody tubes in her ears because of fluid, which again is quite common in kids with Down syndrome...And while I realize it's common in a lot of kids and the actually surgery itself isn't the biggest of deals - It's still another surgery for Pip, it's still another time under anesthetic, it's still another sleepless night beforehand for me, it's still another day where I stuff my face & fear with snickers, it's still another moment where I have to give up my daughter and learn to let go...


I feel like my sweet girl just can't catch a break...It's like you find out children with Down syndrome can have this, this and this and for some reason my little Pip has got them all...Congentital Cataracts - Check...Congenital Heart Defect - Double Check... Hypotonia - Check....Hypothyroidism - Check...


I know I told Fate to "Bring It" the other day but I'd love for this to be Pip's last "Check"...

Got that Fate... 







And have to note that while I had a good cry about all this, Pip really does put this and my life in perspective - This is her at our last appointment of the day...I mean, come on...

1 comment:

  1. Pipsalot...oh, Pipsalot....Hypotonia, Borderline, Diabetic, Hypothyroidism, Congenital Heart Defect, COPD, Asthma, Apraxia/Aphasia, Nistagmus both eyes, Chronic Sinusitis/respiratory infections, Obstructed Sleep apneaChronic Meatal Stenosis, Bilateral sporadic hearing loss - recurring acute otitis as a culprit. Along with suspect Prader Willi. It can be so overwhelming ... we've been of 15th trip under anesthetic. As with our Pip...it seems like everything that could be a problem - is - just a little bit. Grateful for the "Little Bit" part mostly - but can do with less frequency. As much as it should get easier, it doesn't by much. Our challenges are minor compared to some, but at times so overwhelming. Then toss in the IEP's, para professionals, delays, IQ testing, stigmas, judgments, and wonder why sometimes it's hard to get out of bed. Until you get a giggle, smile or "you're my best friend!" Wait until they say she probably won't read, then reads you her first book 4 months later. It's worth it!

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