Packing for the hospice
This is the most important thing to remember when we go away. Anything else we can mostly replace or get by without, but this we can't go without. Ethan takes 4 main medicines twice a day, then we take other medicines in case. We take rescue medicines as well. We also take spare ends for his PEG incase they snap.
Ethan is doubly incontinent so we need to take pads with us and wipes for the changes. We can't buy these in the shops so these are very important to take as well.
Obviously Ethan needs clothes for every day. I pack enough for and outfit a day and then some spares. We are lucky that the hospice wash all of Ethan's clothes so we come back with a full clean bag which really helps when we go home.
Ethan takes a couple of sets of pyjamas too. He gets very warm at the hospice as it's kept warm at all times. So i tend to pack short sleeve tops for him to sleep in.
We also take clothes to keep Ethan warm while he is out. He enjoys being outside so he definetly needs all of this.
4. Splints and shoes
Ethan wears his AFO's (Ankle foot orthotics) daily so he needs those to help keep his legs stretched and his feet in the right place.
I recently bought Ethan a second pair of shoes as his feet never really grow. So now he has a pair for school and a pair for at home. The school ones are easier to get on so we do alternate using them too.
5. Therapy bag
Ethan uses leg gaitors most days to stretch his legs. He also takes his lift pants for walking around in on the hoist. He also has hand splints in his bag too but we don't use these much at the moment and are working out a better solution with his physiotherapist at the moment.
6. Going out bag
It's easier to have a bag with all of Ethan's bits to take out. Spare clothes, pads and emergency meds.
7. Giraffe and Sheepy
Ethan sleeps with his giraffe and sheep every night. Hes had his sheep for years from his nanny and we found the giraffe in the garden centre a few years ago.
8. Swim stuff
At the hospice they have an amazing jacuzzi pool. It is Ethan's favourite thing to do while we're here. He loves being in the water as it makes him feel weightless. He is able to kick his legs and splash around. The pool has lights in the ceiling which adds to the relaxed feel of it.
Ethan is dairy free so we bring him lots of snacks and yoghurts to keep him going. Ethan eats all the food here that's dairy free but its unfair for them to specially get in everything he needs while he is here so its easier that we bring it ourselves.
10. Massage cream
Ethan has a leg massage every morning. This really helps to keep the muscles in his legs from getting tight. Without this massage we really notice a difference in his legs so it's important to keep this up.