TiffandIvy — 5 Minutes for Special Needs

TiffandIvy



                               

Malachy was impressed with the sharks at the Aquarium and

told us that he could talk to the stingrays.

The way they followed him around

I could believe it.

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Also posting at Three Ring Circus.





                               

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Special Exposure Wednesday.

PICC maintenance days are not our favourite.

Especially after IVIG, a blood test and a neck ultrasound.

She hates the poking and prodding

and I hate watching her go through it

because sometimes there just seems like there is nothing I can do to help her.

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Special Exposure Wednesday

Apologies for our absence.

We were in the hospital.

We made it out for Christmas just in time.

I’m still getting over the shock of it all;

Ivy lost her brand new port, not five months old and now has another PICC.

She was septic and although I am thankful that her heart and her eyes are not damaged,

I am really sad that her kidneys are.

Christmas was good though.

We were just all so happy to be back together, nothing else really mattered.

I really hope your holiday celebrations were lovely

and I hope that the New Year is extraordinary.

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Special Exposure Wednesday.

This is how we spent our day yesterday.

Filming for  a documentary segment about immune deficiency and the importance of blood donation.

It was a big day and Ivy was exhausted by the end of it.

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Special Exposure Wednesday

Ivy and Noah celebrate turning five.

Oh what an amazing five years it has been.

I have been a little bit wistful this year.

Remembering how they started life on the outside.

Remembering the night they were born.

Marveling at everything, at them.

It will be strange, I think

when they go off to school in eight weeks time.

It will no longer be our little threesome.

For the first time in a long time it will just be me.

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Special Exposure Wednesday.

Ivy and Noah overcame prematurity – born at 30 weeks.

They overcame hypertonia (Noah) hypotonia (Ivy), feeding issues,

allergies, issues with their lungs and developmental delays.

In a week they will be 5 (and we’ve started celebrating already)

It has been an amazing journey of the heart and the spirit.

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Special Exposure Wednesday.

There is nothing better than a pre school disco, a sausage sandwich and the company of your twin brother

to make your day

and even though you’re exhausted within the hour, you still class is as ‘the best night EVER!’

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Special Exposure Wednesday

To a doctor, she is an immune deficient, auto immune diseased, adrenally suppressed female, with MMP (multiple medical problems).

She has cushingoid features, has severely decreased growth and Ectodermal Dysplasia.

To me she’s just Ivy,

beautiful, vibrant, sassy and strong.

I like my description better.

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Special Exposure Wednesday.

Apologies for last week.

This was us:

Earning us three days in the hospital

but this was taken yesterday:

I’d say she’s doing much better.

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Special Exposure Wednesday.

Looking forward to Summer, Ivy sports her new swimmers, made with love by

an amazing internet friend.

It covers the port fully.

It makes her feel safe and that makes her feel happy.

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