Posted (Tina) in All Posts on March-12-2009

Ella had a busy, typical day with OT and PT. You can see from the pictures all the fun she was having while performing her exercises.

It has been 2 weeks since we came home from the hospital from her SVC procedure. And even though the nights are sleepless, she still looks better to us. I think her little body is very happy about having her SVC open. Imagine a large city with only side streets and no highways for traffic flow…and now, the freeway opened up! This is just huge for her.

And the morning routine…our lovely scale. She has definitely put on the pounds since we increased her food last Friday night. She has gone from 9.3 kilos (20.5 pounds) to 9.54 kilos (21.03 pounds) in just under a week. Normally, that type of weight gain is a red flag for us. And it might still be too early to tell, but her numbers looked great when she was asleep last night. This leads me to believe that she is not retaining fluid but gaining true weight. The next several days will tell the true story.

Ella’s Captopril experiment last night was still in force. She woke up 5 times, versus the 4 times the past two nights. Heck, this is still an improvement. I wish we could give Motrin to her because the one time we tried it, she only woke 3 times. And that was without removing the late dose of Captopril. Well, one can dream.

And I will end on this note…I keep coming across these amazing poems on other CDH blogs that make me cry. They just tug at my heart strings. I think all parents, especially those with children that have any type of special needs, can really relate to this rhyme.

The Chosen Ones

I had a dream the other night. It came to me so clear.
I stood before the throne of God, afraid to come too near.
God said to me, “I hear your prayers. There are answers you can’t find.
I brought you here to talk to me and help to ease your mind.
“I said,”Well, yes, God, I am upset…About my special one.
This punishment is awfully harsh…Whatever have I done?”
God looked at me and shook his head, He said, “My Dear, you’ve got it wrong.
I sent this special child to you because you are so strong.
I searched and searched to try and find someone with a love so rare.
Parents so unselfish they could give her that special care.
I try to save my special gifts, like those you’re speaking of,
for a special kind of parents I call the ‘Chosen Ones.’
Of all the ones to choose from, I know I’ve got it done…
Parents who deserve my best, an honor you have won.”