Jane and Jude's growing and changing a mixed bag

2013-05-13 11:37:49 by Sarah Sanford, Patient Family, as posted on the inside.akronchildrens.org blog.

Jude Jude

It seems like forever since I have taken pen to paper, or fingers to keyboard, as the case may be. It's not because I didn't think about blogging, it's not because I haven't wanted to blog, it's not because I haven't had anything to blog about. Quite on the contrary.

It's because, the 2 main subjects of this blog, Jane and Jude, have been sucking every hour out of every day and every minute of every hour with all things, good, tough, new, old, fun, challenging, happy, frightening and ultimately fulfilling.

To begin with, both kids are in school or school + day programming full time. What a switch!

Jane is wrapping up her kindergarten year, assuming she passes (no, I am not being a pessimist. For our little chatterbox, the jury is still out, but we have faith in her.)

And Jude now attends Akron Public Schools in the morning and Summit DD in the afternoons, except for therapy and doctor appointment days.

It's been a transition. Jude regressed significantly with old behaviors popping back up - bringing with them lots of bruises for me since his comfort, in a real pinch, is banging his head into my collarbone while I give deep joint compression.

That only lasted a few weeks and it was still turtleneck season so I kept covered.

His APS classroom is phenomenal. His teacher is an expert in cortical visual impairment and a sensory guru so the combo makes Miss Melanie the perfect pre-school teacher for him.

Plus, she is outrageously nice, approachable and is not yet convinced that I am a lunatic (yet-;).

He receives OT, PT, speech, and orientation and mobility therapies while at school. The latest chatter was about the idea to "cane train" him to navigate crowds. We signed the amendment to the IEP, giving permission to add the training if need be. I silently vowed to bedazzle that cane so Jude can navigate in style.

At Summit DD, Jude is still at "home" there. He is back with his original Calico teacher, Lucy, and they remain a match made in heaven.

Jane Jane

Summit DD and Akron Children's Hospital remain the backbone of Jude's team. He still receives OT, PT, feeding clinic and all medical services at Akron Children's too.

He was actually discharged from Akron Children's speech therapy with Maria, and Angela, his original OT, moved on - both incredibly sad days. We are happy he met his speech goals and we are happy for Angela's new venture. But Jude and I cried the whole way home, each time.

Our new OT, Megan, is great and Jude is finally warming up to her. Jane C, the world's most fantastic PT, is still by Jude's side as his faithful companion, thank God.

Jude's health has been up and down. His dysphagia (swallowing disorder) has kicked up, causing a few cases of aspiration pneumonia (AP) this spring. AP is old hat to us, but this time we had to take backward steps in feeding - honey consistency thickener, no real solids to speak of, and a nebulizer for in-home PRN (as needed) use to help with his Marlboro Man cough.

His cranial fluid and swelling has played springtime tricks on us too - more to come on that later, I am sure. His tremors have increased and his visual tracking has suffered, so he'll be fitted for a weighted glove or sleeve. I just may bedazzle that, too, think a young Michael Jackson.

His visual exercises have been upgraded, and his new glasses are on order. Phew, I think that's the latest with him.

Some of our biggest challenges have been finding transportation for Jude to all of this stuff, as calendars are filling up rapidly. Aunts, sisters, cousins and friends have come to the rescue.

But there are still times when tough choices have to be made - like do we abandon Jane at school every Friday and hope to race back before aftercare ends so I can get Jude out to Victory Gallop for Hippotherapy?

I couldn't find transportation - he can't exactly hop on the Metro or hail a cab with his carseat and riding helmet in hand - for Jude to Victory Gallop, and now he hasn't seen his horse, Rufus, in weeks. It's a crying shame.

But it's better to miss a horse than to have your sister end up in CSB custody because she was abandoned in favor of Hippotherapy at Victory Gallop, no matter how fantastic it is.

Jane is healthy as an ox, fresh out of the box, other than miserable allergies. She looks like she got the short end of the stick in a prize fight most mornings with swollen eyes. Thank goodness for Dr. Kishore's office.

The Heart Center no longer needs to follow Jane - fantastic news. Dr. Wasserbauer
did mention that she could stand to gain a pound or 2. Jane is tall and lanky - tall for her age and thin for her height.

I suspect it is because she takes after me. Or it could be because their birthfather is 6ft 5in.

Both Jane and Jude are growing and changing and succeeding and facing challenges - sometimes gracefully, sometimes not. They show bravery, and sometimes not. They show patience, and sometimes not. They show kindness, and sometimes not.

But they always show love.

Which is why even when the Sanford life is good, tough, new, old, fun, challenging, happy, frightening, our life is ultimately fulfilling.

For that we are,

Grateful Prayerful & Hopeful.

Hey, Jude! is a blog by Sarah Sanford. The author shares her experiences as the mother of two adopted children, Jane and Jude. Jude has multiple special needs, including cerebral palsy and sensory processing disorder. She spends a lot of time at Akron Children's Hospital with Jude. Read more of Sarah's posts.

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