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.
- 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.
- You are so strong – the video shows the mildest side of your flipping and squirming session
- 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.