Day 263

Quite often I will run into someone who asks how the girls are going and then they are shocked to hear Ellie is still in hospital.

‘What, she is still in hospital?’   ‘So she has never been home?’ ‘How long until she comes home?’

This doesn’t annoy me as I am fairly confident if the situation was switched I would find it difficult to find the time and dedication to keep connected to such a long struggle. It does however highlight the amazing support we have of so many people who daily keep up with our journey even if we have no idea what is happening in their lives this year. It is quite tiring being so focused on just ourselves but  the constant rallying of those around us really helps.

Ellie had her first sleepover with Granma last night (Hannah, that is another thing she did before you). This allowed us to have our family afternoon yesterday and then for me to take Nate to a pool party while Deb looked after the other kids.

Ellie’s paediatrician visited today and he noted how impressed he was that she is handling her Rhino virus without any extra breathing support. Go Ellie! I have now come in to spend the night with her and although it is harder work having a snotty baby, the private room is sooo much nicer than the shared ones.

Ellie, I hope you forgive me for sharing a video of your little tantrum today, but it highlights a few amazing things.

  1. You were meant to have a trachy and not be able to make noise, today you screamed the room down while trying to tell Daddy you were tired, uncomfortable and over it.
  2. You are so strong – the video shows the mildest side of your flipping and squirming session
  3. You are determined – now you are getting some strength up it is easier to see the stubborn side that helped you so much when you were really sick.

*Matt


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7 thoughts on “Day 263

  1. I loved this video! I don’t love to see Miss Ellie having a tantrum but love to see how well she is doing.
    Keep up the great work Ellie!! And mum and dad.

    (PS Ethan throws a very similar tantrum. If only they realized sleep is the best thing ever!)

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  2. Thank you Matt for a lovely story today and to see Ellie rolling and carrying on was beautiful she has come so far with the wonderful care and love she is getting from the doctors, nurses and all the family support, friends etc. Judy

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  3. Love the moment in second video when her grizzly voice turns to a delighted baby “gurgle” when she distracts herself by swatting the mobile “wow, did I do that?”
    Matt, you’re not supposed to know what is going on in the lives of your “cheer squad”- we are all blown away by your whole family’s ability not just to have merely coped with the past year, but to have done so incredibly well in the face of so much stress. It’s been a real privilege to witness so many miracles unfold and, in the literal sense of the word, awesome – thanks for always sharing with us all x

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  4. To Deb and Matt, Thank you again for allowing me to be part of your journey. I have never met you Deb, and Matt I have only met you briefly, but as Laura’s auntie I have travelled your journey from the moment you found out you were having the twins. That news in itself was hugely negative, but you both made it through with a positive attitude, and the faith that God would deliver to you only what you had the strength to handle. So far you have endured some of the hardest challenges, but I can assure you, you were never alone, not for one minute. Deb and Matt, you have both learnt so much about yourselves, about the people and friends that care, about how you don’t know how you will have the strength or energy to face another day. Then you look into the faces of your four beautiful angels, and you smile at each other, and carry on sharing your dreams. God never promised us an easy journey, and believe me I know. Everyday is a struggle for me, and I hope, pray and send love to my only child, lost in a world of drugs.
    So, I say to you both. Your updates everyday are truly appreciated. There sunshine on a cloudy day.

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