Tuesday, June 23, 2015

Celebrating Big Sis

See that beauty? She's about to graduate from Kindergarten, and I could not possibly be more proud of her.  Georgia, if you ever get to read this blog - you are my sunshine, the light of  my world - I love you so much.  Please don't ever change for the world - you are awesome the way you are.

Jake is completely in love with his big sis.  He follows her around and asks for "sissy" when she is not there...and so often I see him trying to do the things she does.  I'm so glad they have each other.

In regards to my last post, the nose swab came back positive for human metapneumovirus, but by that time Jake had beaten it.  He's so tough and strong - his half a heart does not hold him back!  Shortly after that Georgia came down with all the same symptoms, but of course didn't need hospitalization, and it seems like for the moment we are in the clear in our house.  I probably shouldn't tempt fate there -- knock on wood.

Another Heart Mom shared a verse today that I needed to hear -- sometimes this life is completely overwhelming. Sometimes I just forget to wait on the Lord, and spend days, or weeks plowing straight through - until it becomes too much.  And eventually it always becomes too much.

Psalm 27:14King James Version (KJV)

14 Wait on the Lord: be of good courage, and he shall strengthen thine heart: wait, I say, on the Lord.

The thing is - when I pack my diaper bag to leave the house, I need to pack a G Tube replacement kit, a feeding pump, feed bag filled with special formula and syringes for flushing....For some reason I was struck by that this week.  It's not "normal" but it is my norm.  My diaper bag is HUGE :) Today I feel fine about it, but some days it just strikes me as incredibly unfair -- for Jake.  On the outside he's Mr. Perfect but there is so much maintenance that goes on behind the scenes.  I find myself praying daily for guidance, strength and acceptance -- especially when the feeding pump keeps kinking up and it takes 2 hours to get 300 ml into Jake, or when the feeding tube won't connect correctly and I find Jake standing in a puddle of stomach contents crying because his socks are wet when I've only left the room for 2 minutes.  Does that make me ungrateful, feeling this way sometimes? I hope not.  Because I know how blessed I am.  I wouldn't trade my reality for anyone else's.  I am blessed and my cup is so full.

The last two weigh in's Jake has lost weight, of course...he's weighing in again on Friday but I'm not holding my breath for a gain.  Two weeks ago we were faced with the reality that Jake needs to gain - we have to let go of this pressure we have to get him to eat and drink, and just feed him ourselves and let him gain.  So that's what we have been doing.  Jake is on a set schedule, so at 10 am, 2 pm, 6 pm and 11 pm regardless of where we are or what we are doing, the feeding pump goes on his back.  I've been setting up feeds on the side of the TCH, in parking lots, random driveways, etc.  I keep thinking that his legs look a little fuller - please let it be reality not wishful thinking.

I need to send a huge shout out to Little Bay Island's Home League group -- When I wrote my post about the costs of maintaining Jake's feeding tube they all chipped in and sent Jake a check.  It's so thoughtful, and self-less and amazing.  The amount goes right into Jake's account, and will be used when we need to buy supplies once again.  Thank you.  Seriously.  From the bottom of my heart.  

One huge development in the recent weeks...Jake now brushes his teeth.  Any parent of a child who is tube fed will understand -- Jake has never let me brush his teeth, or been willing to brush them himself, and because of the possiblity of developing an oral aversion we were advised not too push him.  But with coaxing, and encouragement from Big Sis, he now does it himself with a touch up from me afterwards.  I'm so proud.

Thought I'd share a couple of pics from today with you - it was cold outside so we painted this afternoon.  I just love that expression of concentration on Jake's face.  The little doll.

After breakfast Jake vomited his feed.  Unfortunately that's not an unusual occurrence and he went straight into the tub after.  Here is is just after I took him out and asked him to tell me what a monkey says....The cuteness is too much.

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