week 2 at home has been very hard for Jackson, it looks like his sensory processing is getting worse : His night time episodes are worse then ever but during the day he is starting to respond to his familiar places which is good but when he goes downhill he […]
Blog
Today was Jackson’s last session with his current childminder. Thank you so much for all the help and support you have gave us these last few years it has been appreciated. We are sorry he couldn’t spend his last session with you 🙁 He has saved up your cuddles for […]
Last session with Childminder
Went for a click and collect at @marksandspencer for Jax’s new disabled friendly clothing when the lady recognised Jackson, who’s anxiety was through the roof!! so she gave me a bunch of flowers and Erin some sweets because she follows Jax and thinks we deserve it. I nearly bubbled
Thank you Marks and Spencer !
Another hard day for jax unfortunately he has regressed and spends more of his day upset and unsettled then he does laughing and smiling. It’s a bumpy journey but he will get there. This is how flat he has been most of the day (except for a car ride […]
Another Flat Day
I’mm not going to lie – it has been tough. Jackson is struggling LOTS on a night time, he has needed to be masked a few times 😥😥. even though we expected it, to see Jax suffer like this is awful. During the day he is coming on so much, […]
Week 1 after Jackson has been discharged
It has taken me a few days to gather my thoughts so just a warning I might go on a bit. After 588 days (nearly half his life) in hospital Jackson has been DISHARGED. He has been through absolute hell and back but has done it all with a smile. […]
After 588 days in Hospital – Jackson has been discharged
We’ve got Jackson home for another ‘trial’ in his own bed. Unfortunately stopover number 2 (on Tuesday night) went horrible wrong. Jackson woke up severely distressed and then had some breath holding episodes requiring intervention 😥. He settled after a few hours and went back to sleep. the hardest thing […]
Jackson at home trial
We could not be prouder of Jackson he is a star. He struggled (as expected) with his overnighter. He fainted twice and was totally overwhelmed (this is why we wanted to slowly transition him). Some lovely cuddles off granny Scotland definitely helped. Unfortunately for us, when we arrived back at […]
Jackson’s over nighter
21st July 2018 Jax is very flat and tachy.. it’s either infection or because they have altered his PN they have reduced it by 1 hour (104mls). Fingers crossed it’s the PN as that’s easily fixed 22nd July 2018 Unfortunately Jackson has deteriorated over the last few hours. he is […]
21-23rd July Jax Update
We are very proud to say that the little wee man is doing fantastic. he has been having bursts of energy all day. we have even had smiles. its scary times like yesterday that reminds us how fragile and rare our baby is. today he developed the rash that you […]