Sunday, February 20, 2011

Day 184

Thursday February 17, 2011

Eileen and I cuddled with Nina all night.

Nina slept. Some tossing and turning.

Teddy woke up in a great mood. Said I was the best cuddler in the world.

On the way to school, asked me if things were bad. I reassured him that they were the same and that I was so proud of how loving he was being to Nina.

He held my hand all the way to his classroom.

Friends came to visit.

It hurts to see the ghostly looks on their faces when they see Nina.

I hate seeing how behind the pain in people's eyes death looms....they look at Nina and see death. I hate that!!!!!!!!

Nina enjoyed her bowl of Lucky Charms. Had dad hold the bowl but insisted on feeding herself.

She can't walk any amount with assistance.

She can barely hold onto to us when we stand her up to clean her up after she goes potty.

We have her bowel movements under control. Doctors worried about constipation because a major side effect of narcotics.

She can still swallow her pudding with the pills.

Swallowing becoming increasingly harder.

Gags on food.

Gags on water and liquid in particular.

Extremely frustrated when we can't understand her.

Can barely speak.

Sometimes only 1 in every 10 words is intelligible. Takes multiple tries for us to understand her. She looks panicked, pissed, scared!!!

Keeps saying she feels like she is falling out of a car :(

Constantly struggling with temperature regulation.

Asked to go swimming again.

Wanted to wear her orange swim suit. Said she liked them all but insisted I pick one :) I told her I loved the blue polk-a-dot one.

Wanted Panda for lunch! Who would have guessed.

Teddy had a wonderful play date with his buddy Will.

His teacher said he is doing extremely well.

Teddy is a rock!

Talked to my friend Susan about bringing her boys to see Nina before she got worse.

I want every one who loves Nina to be able to see her and love on her.

Made Eileen hold Molly. Systematic desensitization of animals! Eileen's husband very happy!

Nina went swimming with dada again. This time not as long because she was cold.

We laughed when we could.

We cried when we needed to.

We tried and tried to make Nina happy!

The Becchios came by with the boys.

The boys were so sweet to Nina but were sad and scared. I tried to use Molly and dressing her up to bring in some levity.

Nina struggled to be nice.

Got happier with chips and the cheesecake cup from Panda Mario brought her when he picked up Molly.

Nina mocked Mario in front of every one. Reminded us all that he is going to be Pearl from Spongebob for her birthday and has to wear a skirt :)

Nina wanted to cuddle with Daddy for bedtime.

Both kids fell asleep easily.

We tried to rest :(


  1. Thank you for sharing Rosy... I LOVE how in the video when Todd goes to Nina to see her swim she looks up at him...her whole face changed and literally beamed. For a split second she changed from her poor body fighting to communicate and stay engaged to complete delight is her dadda! She is beautifully wonderful and holds so much courage and strength.

    Thank you for sharing!
    Love to you all...

  2. Rosy, your honey girl is just precious. I agree with Amy, the smile on her face when Todd came in was priceless. She clearly loves you guys so much! If only all families could have as much love as yours.
    Praying hard for you all at this awful time that God will continue to sustain you and give you strength to endure and that you will gain great comfort from our God - the one who loves Nina even more than any of us could ever imagine.
    Lots of Love,
    Lisa xx

  3. Just beautiful. I agree. Her smile is touching.