Happy Birthday, Janie!

Thank you, everyone, for the awesome messages, videos and photos💕 It was just great to be at home with both the girls and Tim, Harry and Alice. I had a trip to the supermarket (what an adventure!) and bought the chocolatiest cake they had, and we ate the whole thing😬🤠😁 Tim tried to give me a sleep in this morning by getting the girls up and dressed but Disa came running into the bedroom and said: “Heyo Mamma, you waking up?”😂 Ada is doing better every day, and although she is still neutropenic and has to continue phosphate supplements (which is quite a trick to achieve with the feeding tube), her blood test results are otherwise tracking well so we get to stay home for a bit longer😀 The phosphate supplements are making her quite gassy, she has been positively rocket-powered today😂

A new age, a new normal, a new look😲😂🌻

A really hard day

Hi everyone, I hope you are all busy enjoying the weekend with family and loved ones. Hug them and treasure them, even the difficult ones. Tonight’s update might not be written that well, because today has been one of the hardest and our tendency towards being introverted is very tempting right now.

Ada is on four different antibiotics now, because cultures of her blood from yesterday showed a bacteria which could be either a chest bug or a type of meningitis. She is having blood taken every few hours and we are waiting for results which may be available Sunday or Monday. The meds have given her a very upset tummy and she has been cranky and downright unhappy for long periods of the day. Because we don’t know for sure what bacteria it is yet, we had to stop Disa from coming to visit today, and because I am only seeing her about once a week now it was very painful. I also needed Tim to stay at the hospital for hands-on support, which meant not attending his best friend’s wedding, a real frustration and disappointment to us both because the couple are so special to us and we tried so hard to have at least one of us there. It seems inevitable that this awful disease is going to affect every part of our life, sometimes in spite of everything we do to mitigate it. We each had our separate moments of sadness today, and a little cry together after a video call with Disa. Ada became worried for us and ordered us each to cuddle her current favourite teddy bear in turns💕 I’m grateful for our little baby’s big heart, and for all of you helping us stand and reminding us of our strength and the good things in life❤