Day 158

I am beginning to find in very frustrating being away from the hospital and not have full knowledge of everything that is going on with Ellie. I have not been there since my brief visit on Tuesday when I realised I was coming down with a virus and went home. On that note Matt, Hannah and myself did enjoy a nice anniversary lunch today and Matt and I spent more than 30 uninterrupted seconds together in what has been a very long week for all of us and I am feeling a little better. I am confident I will be back at the hospital on Tuesday. Matt will do his usual Monday routine tomorrow.

On an Ellie front, no changes again. I did find out today that a few days ago her NAVA level did increase and it is still just shy of where is was when I was in there on Tuesday. I think no other changes is starting to become frustrating. I know she is resting and slowly getting bigger, but it would be nice to hear that she is making some sort of other progress or that the doctors have a plan for her. Hopefully these questions will be answered when I am back on board this week and able to have a meeting with the doctors.

Nan and Papa spent time with Ellie today (which allowed Matt and I to spend some time together). Ellie had hugs and had a story read to her. After they left Ellie was in her chair for awhile to help relieve her reflux and had more stories read to her by the nurse. I’m told 3 nurses got together last night and gave Ellie a much needed bath.

Hopefully this coming week with be ripe with plans and progress and answers.



Hello Nan



Sleepy time









I’m so good at pooing now, I get baths afterwards (in Granma’s sink)


4 thoughts on “Day 158

  1. I know I shared this last week. I’m hoping it might ease your frustration with no change. A blessing from us:

    I should tell you
    at the outset
    this blessing will require you
    to do some work.
    First you must simply
    let this blessing fall
    from your hand,
    as if it were a small thing
    you could easily let slip
    through your fingers,
    as if it were not
    most precious to you,
    as if your life did not
    depend on it.
    Next you must trust
    that this blessing knows
    where it is going,
    that it understands
    the ways of the dark,
    that it is wise
    to seasons
    and to times.
    and I know this blessing
    has already asked much
    of you—
    it is to be hoped that
    you will rest
    and learn
    that something is at work
    when all seems still,
    seems dormant,
    seems gone.
    I promise you
    this blessing has not
    abandoned you.
    I promise you
    this blessing
    is on its way back
    to you.
    I promise you—
    when you are least
    expecting it,
    when you have given up
    your last hope—
    this blessing will rise
    green and whole.

    Liked by 1 person

  2. Plans, progress and answers are the very least you all deserve. Maybe they are all there, just a bit difficult to see at the moment – I feel the “can’t see the forest for the trees” analogy coming on again – sorry, you’re probably sick of me using it by now.
    Ellie, get that chainsaw out and revved up! xo


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