Acorns Children’s Hospice is our safety net
Ezra has a life threatening condition and visits Acorns for the Three Counties for short breaks. Hear why coming to their local children’s hospice means so much to the family, from his mum Emily.
When people meet Ezra the first thing they notice is his big smile. He makes everybody smile because he’s got such a huge personality. He makes me laugh every single day. The second thing they will notice is that he always wears a backpack. A backpack which beeps.
A few days after Ezra was born and we got him home, we noticed he wasn’t waking up at night to feed like his older brother did. I had to set an alarm to make sure I fed him every four hours. One night I went to feed him and found he was very floppy so we rushed him to A&E.
After a few worrying days in intensive care, Ezra was diagnosed with Congenital Hyperinsulinism. This means his body produces extremely high amounts of insulin, the hormone which controls your blood sugar levels.
The scary thing about his condition is that he can go downhill very rapidly. Without warning his blood sugar level can drop to a critical level and he will fall unconscious, unable to be woken up. Multiple times we have had to call an ambulance. It’s a petrifying experience.
Ezra has to wear a backpack every hour of the day. In his backpack he has lots of things to keep him well. His medication and his feeds, which is a special food he is given via a tube every two hours to keep his sugar levels up. And most important is his glucose monitor which beeps. The monitor takes his blood sugar levels every five minutes and will beep if it drops too low, this is when we know to give him medication.
Our lives are very busy and full on because we have to constantly check Ezra’s levels, and give him his feeds and medications. This is why coming to Acorns means so much.
When Ezra comes to Acorns Children’s Hospice for a short break, he has so much fun. They indulge his every whim. They will give him all the attention and he has the time of his life. He really looks forward to his Acorns visits. It gives me a break too because I know he is in the safest of hands.
It means I get a full night’s sleep with no alarms and no thinking about medicine, but it also gives me quality time with Stanley, Ezra’s older brother.
It’s really important that Stanley gets some focus and Acorns have been amazing and so supportive of his needs as well. He has met other siblings who are in a similar situation, so he knows he isn’t alone. He also has a Sibling Support Worker who is there to talk to when he needs it.
Throughout lockdown, she has kept in touch via video calls where she will ask how he is doing and chat about his interests. Just having someone who isn’t his mum that he can talk to in an open, honest way is very beneficial to him. He’s really enjoyed those video calls.
She has also sent him some fun activities in the post and helped him come out of his shell a bit when he was struggling with homeschooling. Stanley loves Acorns as much as Ezra.
Ezra is become a bit more unstable again at the moment, but I know I’ve got Acorns and that they know exactly how to care for him.
We have an overnight stay coming up which is our first since the pandemic began. He’s so excited and I’m really looking forward to a bit of a rest and some time for me and Stanley. Acorns is our little safety net. I feel so lucky to have them.
Emily
Ezra’s mum
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