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I have to laugh to keep from crying.  Lizzie’s doctor told me she had something to show me this afternoon and directed my gaze to the computer screen she was sitting in front of.  Not sure why but I figured she was going to show me a picture of her kids or an interesting xray or something, as my eyes adjusted to the print on the screen I made out the words “influenza” and “positive” and “Fowler, Susan E.”.  What the what?!

There’s been quite a hustle and bustle going on this week up here in the PICU with home health preparations and planning being made.  So many people working together to get our girl home.  Apparently Lizzie wasn’t getting enough bedside attention and thought she’d catch the flu just to show us.  So far she’s not been hit really hard with it, we’re hoping her flu shot has helped minimize the effects.  She ran a fever off and on, has vomited a time or two, has started coughing quite a bit, and has slept a lot.  The cough has me worried, I am asking for prayers  that it doesn’t get any worse.  I tried asking them last week to leave her in isolation until we were out of here, nobody listens to me. I bleach everything I can use bleach on (everyone laughs at me) and we haven’t even let the boys come see her the past few weeks.  Aaaarrrggg! Poor Lizzie.

I started but did not finish a blog entry on Monday, this is where the comical part comes in. “OH MY GOSH! Today has been such a good day and it’s only noon! I’m going to write this quick before someone pulls a “Lizzie” and things go south. Lizzie woke up upside down with her hiney on the pillow at 0815 this morning, she grinned and let me rub her back.  The nurse practitioner came in and examined her and we both cried as Lizzie so sweetly looked at me and softly said “momma”.  She then reached for me and we rocked and cuddled for the next hour or so”.  I guess I wasn’t quick enough.  Or maybe I should have just kept my mouth shut.

Lizzie has remained her spunky, sweet, rotten self in between some serious sleeping.  She still scratches people for fun, hmmphs, and freely gives the stink eye. Lizzie has also taken to pulling unsuspecting people’s hair as they bend down to adjust a pump or her vent settings.  Then brilliant me thinks to myself, “hmm, Lizzie has never had hair, she probably just doesn’t realize she’s hurting those of us who love and take care of her on a daily basis, I should just give her hair a little tug so she knows”.  So I may or may not have tried out my ingenious idea, and she may or may not have laughed like it was the greatest thing ever done to her and pulled my hair again on purpose so I may or may not do it again, multiple times.  She has such a warped sense of humor.  Sorry fellow care takers, you’ve been warned.  She strikes like a cobra.

Lizzie had a cardiac echo today and all looks well!  The pressures in her heart and lungs have stabilized compared to where they were, and there aren’t any present concerns with her heart function. She has even been able to tolerate time off the bi-pap, it’s such a gift to see her full face. Lizzie has also done well with her g-tube and has managed to acquire quite the girlish figure in spite of all of this. She was 14 pounds and China even diagnosed her as malnourished when we first got her.  Lizzie is now a whopping 22lbs!  She doesn’t even look like the same child! Unfortunately Lizzie and I appear to be on the same weight gain program :|. That’s not good.   But what is good is looking back on how far she has come.  I remind myself of this as the seemingly never ending barrage of setbacks get thrown at my girl.  And I pray the Lord continues to protect her as He has done time and time again.

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  1. sandy



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