Niamh has become very sleepy now, yesterday she was awake for less than one hour. Today she was awake quite a bit more, but slips between sleep and awake. She is lost most movement in her body, she still moves her arms sometimes, but the rest of her is very floppy. We still managed to get in the spa yesterday and today though.
Niamh is comforted very much by holding hands. So much so, that you need to give her good warning if you want to let go.
She did have what seemed to be some small but regular siezures around lunchtime. Luckily they stopped and haven't come back this afternoon. We have topped up her oral morphine which may be helping.
On the whole she is peaceful and relaxed, but it so hard for us to see her leaving us a little each day.
Just to make life challenging, we had to pick Emilie up from school early today with a tummy bug. She's been vomiting all afternoon.. fingers crossed she feels better in the morning.
heartbreaking what a beautiful little girl im very touched by all your bravery what an amazing family
ReplyDeletehave read your story with tears in my eyes what a beautiful little brave girl and what an amazing family thoughts are with you x
ReplyDeleteJe pense bien à vous et vous souhaite de pouvoir continuer ainsi à apporter tout votre soutien et votre amour à Niamh et Emilie. Bien affectueusement.Claudie
ReplyDeleteNous venons de prendre connaissance des dernières nouvelles concernant Niamh. Nous vos souhaitons beaucoup de courage. Tous les jours nous pensons à vous.
ReplyDeleteGroses bises à Niamh.
Mireille & Jean-Claude
Hi Lovely Family,
ReplyDeleteYou will know who I am when I tell you how sorry I was that my little playmate was too poorly to play and that her gorgeous little sister is so "sleepy". Just needed to let you know that I am thinking of you all and sending loving and positive thoughts to you all too, including "Grandmere"!
Hope to see you soon. With much love from
Julie XXXXXXXXXXXXXXXXXX
always thinking of you all, saying a prayer and sending you my love, Michelle
ReplyDeleteOur thoughts and prayers are with you all at this time. Niamh's bravery and your strength as a family has touched us deeply. Christine, Ed, Erin & Miax
ReplyDeleteJust back from a few days in France. It was good to come and visit you at Acorns recently. We thought about you whilst we were away and continue to do so at this difficult time.
ReplyDeleteBest wishes to you all.
Nick and Vicki
Thinking of you all and praying for your beautiful family. Much love and best wishes.
ReplyDeleteEdel and Colin Murphy xo
It is heartbreaking to hear what you are all going through. Your strength and courage at this time is really an inspiration to us. We are thinking of you constantly and praying for beautiful little Niamh. Kate, Jon and Florence x
ReplyDeleteWhat can we say. Nothing will make it better for you; yet we all think about you so much and will her on. You are still doing an amazing job, she and Emlie are lucky to have you as mum and dad.
ReplyDeleteLucy, James and Daisy xxx
Our thoughts are with you all xxxxxxx
ReplyDeleteI am deeply touched by the love you obviously share as a family and your beautiful children, Emilie and Niamh.
ReplyDeleteLove and blessings to you all, I have lit a candle today for Niamh and you all,
Ann xxxxxxx
You continue to be in our thoughts, our love to you all as always, Gary, Emily, Benjamin and Isla xxx
ReplyDelete