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Is it Thursday?

The calendar says that it is Thursday.  Thursday, but I couldn't tell you the date if you tried to beat it out of me.  Ivey's already beaten you to the punch, literally.

Our girl came home on Tuesday afternoon.  Orders were written and we waited for Matt to drive to the hospital to follow us home considering that the temp was just of 32 F.  Of all the weeks for snow to be in the forecast.  Since arriving home it has been the mental swing back into a schedule that we have not experienced since the days of Ivey's trach and the physical snap of organizing, pulling up meds, administering meds and fighting fatigue.  Oh, and also trying to be a present mom to two boys I have missed desperately are part of the mix.  The realty check reminds me that Matt and I are a great team.

Ivey's swelling is down significantly; however, I can't say the same for her pain.  And to think, there are many more days ahead of us.

Where we have been through many procedures with Ivey, this time Home is different.  This is the first big procedure without support from home health nursing during the night time witching hours. The nurses would sit with her at night managing her health needs while we slept.  Ivey lost her nursing hours over a year ago.  This time there is no end to the day or night, they are merged endlessly together.  Her regimen of medications runs every four hours with some scheduled in the in-between hours, this does not include her normal daily medications and feeding.  Not to mention, she is not sleeping except in spurts and her pain is around the clock ebbing and then increasing.  I am optimistic that this will improve as the days pass.  Part of me wants back in the hospital, no matter how homesick we get, the other half of me knows we will push through this and come out better on the other end.

She is actually sleeping now, hence the update.  It is sweet to watch.  Mostly, it is a relief because she is at peace for a moment.

Ivey is enjoying staying in one spot.  Moving around agitates her, and rightfully so.  She is loving to snuggle and once comfortable will leave ice packs on her face - not something she would tolerate under normal circumstances.  She is also wanting to sit and hold my hand, which is not something she has ever really done.  Hugs, kisses and hand holding are not Ivey's means to affection, all of which most of us take for granted under normal circumstances because that's just what most kids do.  Typically when Ivey does hold your hand, which is a large majority of time,  you are expected to play a game or sign with her.  In the past week she will just hold my fingers.  That's all.  Hand holding is very endearing.

This week is a reminder of Ivey's need for touch and its significance in her life.  Touch for Ivey is everything.  Literally - everything.  Security, stability, reassurance, anchoring, attachment to this world, my voice to her and her voice to me.  It is everything you can imagine and then some.   She held Matt's finger the other day and he would not move a muscle until she finally let go because in the past it has been such a rare occurrence for her to want to hold on to us.

Well, our girl is up.  Spurts of sleep.

You are all so appreciated for thinking of Ivey and our boys over the past days - years really.  Thank you for every text or phone call and card.  Time is so limited that I can't get back to everyone, but please know it very appreciated.  Please text and/or call.  I'm locked in for a while with our girl.  I may not be able to get back to you for days, but knowing you are there gives the spark to push through.  It's almost impossible to explain, but thank you - .

G.

Already very noticeable movement of her upper jaw and the mid-face.  Bruises are still fading.  Her upper lip area and cheeks are full because of the hardware in place underneath the skin and a little swelling.  Can you believe she will leave the headband on?  It holds the distractors back that are exposed through the skin on either side of her little face.




Comments

Rob and Tracy said…
Wow. Look at her little face starting to change. With much love for you all from us.

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