Day 4 - McHappy Day

Enjoyed a beautiful sleep last night and some morning rays with a coffee at Ronald McDonald House. It's McHappy Day today so make sure you grab a Big Mac and support a wonderful organisation.
Received a gorgeous bunch of flowers last night from the Desparate Housewives crew which has brightened the room up - thanks ladies ❤️💕
 
And Alex looks in good form too so we're kicking goals today 💃💪🎉
We will attempt his first shower in a bit on the commode. He will need to be re-cannulated today for ongoing IV fluids and regular blood testing. He is yet to have food orally but the continuous PEG pump feeds are giving him a good kick start

Comments

  1. KimNovember 18, 2022 at 5:25 PM

    So pleased that everyone’s rested & re-energised for the next steps forward. And that little dash of TLC for Mum is wonderful ❤️

    ReplyDelete
  2. Linda WadsworthNovember 18, 2022 at 11:30 PM

    Alex is looking so much better. Glad you were able to get a good nights sleep. Hope all goes well today.

    ReplyDelete

Post a Comment

Popular posts from this blog

Day 8 - Smiles, walking and discharge planning

Image
Another early start to the day. Despite ceasing overnight continuous PEG feeds at 4am Alex wasn't interested in breakfast at all. So we've decided to cease overnight feeds all together in the hope it may stimulate his appetite 🤞 After transferring back to bed I received my first smiles since surgery which was just lovely! Hello Alex... Nice to see you again 👋 He was then hooked up for a 1 hour PEG feed via the pump which currently occurs after every meal if he hasn't eaten followed by 3 hourly water feeds.  Neurosurgery are happy with our plan for discharge Friday. The wound is healing well although I literally have to be on constant guard as Alex takes every opportunity to get his hands in his helmet to scratch at those stitches! The Rehab team reviewed us. They were slightly concerned by our decision to discharge Friday but I assured them we have a good team in Newcastle and I felt Alex would improve best at home. He had a small focal seizure while they were...
Read more

Background

Image
So most people who know us also know about Alex. They know that he is incredibly sweet and loves a good hug. They also know that he loves to jump on the trampoline, play in water, listen to music and has significant additional needs. Those needs are as a result of a rare and tiny chromosomal duplication called Dup15q which was diagnosed around 7 months of age. So for the past 11 years we have been heavily involved with therapies, medical teams, support workers etc. Alex took many years to learn to walk and remains non-verbal; although he has very expressive eyebrows! For information regarding Dup15q please click here Alex remained seizure free until April 2021. Initially it was just the odd drop here and there. Alex would be eating and his head would suddenly drop forwards often hitting his plate. But he would continue with whatever he had been doing at the time like nothing had happened. I had read about atonic drop seizures in Dup15q and knew it was always on the cards for Alex. I ho...
Read more

19 December - 3 weeks post discharge

Image
So quite a bit has happened in the last 2 weeks but I'll try and do a brief summary... Alex's recovery continued: - walking improved with the assistance of Physio Julie and Kangaroo ankle-foot orthosis  - Appetite improved and he was eating well again - Seizures were almost non-existent except for the occasion 'mini head-drop' often around the time medication was due Matt's father came to visit from the UK which was lovely as Alex has a special bond with his grandad And then on Sunday night Alex became very unwell with Covid. For the first day he had a temperature, shivers and was pretty unhappy. On day two the temperature had gone but the vomiting commenced.  We called an ambulance on Tuesday as we were really concerned about him. They offered to take him in to hospital but as his observations were fairly normal we decided to persist at home for the next few days. We used a pump to administer a slow rate of feed or hydration via ...
Read more