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Noah has been shielding at home for nine weeks.
Noah usually visits Little Bridge House with his mum, Louise, dad, Stuart, and sister, Heidi.

Although things have been challenging, mum, Louise, describes how the family are enjoying spending precious time together and working on making some wonderful memories.

"Our family have been shielding at home now for the past nine weeks. This has now become a new way of life for us, with my husband working from home, upstairs in our children's playroom and myself home-schooling Heidi and Noah.  

Having an extremely vulnerable child during lockdown doesn't come without its challenges though. Noah was awaiting emergency tests and had an operation that should have been taking place imminently. The operation has of course now been postponed, and professionals are trying to find the safest way possible to carry out the tests. Meanwhile, Noah is sadly learning how to 'put up with' the body spasms that take over his body, that are most prevalent during the night, without us knowing what the cause is and with no treatment. This is as well as having to manage one of his complex conditions, in a less than ideal way, waking him up each night in order to keep him alive.   

We have had about 5 shielding letters now from various departments. Each one really hits home just how vulnerable Noah is.

He doesn't just have one condition that puts him in that category, there are sadly a few. I do worry when our lives will return to any form of normality.  

Almost all of his usual appointments are now taking place virtually, his community nurse visits only for vital procedures in full PPE, and wherever possible these procedures take place within our home. She is our hero, more so than ever at the moment. Continuing to work and support families every day. Always picking up and dropping essential items, always at the end of the phone and always putting others first.  

Noah usually receives support from several services in the community, physiotherapy, occupational therapy and speech and language therapy for example. All of which have stopped. Therefore, we are going solo, trying to cram in all his programmes and keep him well.  

Noah struggles to understand why he can't go to hospital for his appointments. It is a huge part of his everyday life and it is a little heart-breaking to hear him keep asking to go to Bristol. A place that he sees as a place that makes him better, is currently a place we are trying to avoid at all costs.  

In our early days of shielding, getting groceries and essential items was the hardest thing. My husband, Stuart, was our nominated person to do the food shop, taking extra precautions to try and limit the risks. I'm talking putting anti-bac on keys, glasses, washing clothes and straight in the shower the second he stepped in the door! Thankfully we now have a vulnerable government slot for home delivery and a food parcel each week full of essential items. This has been a godsend, as means we have no need for any unnecessary exposure. 

I have a disabled mother, who relies on us for cooked meals and other cares. My sister has taken on much of this responsibility due to us shielding, but one of us is still dropping meals once a week. It has been hard, as she lives on her own and misses the company.  

Noah relies on corn starch to help keep his blood sugars stable overnight. Without it, his blood glucose levels drop to life threatening lows. You can therefore imagine my horror when I couldn't get hold of any on our online shop. The fear was unimaginable. We have been very grateful for friends and family who have since managed to hunt us down some.

Social media has been a godsend for reaching out for help during these times and we wouldn't have managed without deliveries from family and friends.  

Not going out for walks can be really hard. The weather has been lovely! We are very thankful to have had our small garden made wheelchair accessible last year so that we can enjoy some fresh air and exercise, but it isn't quite the same as going out. We are allowed to go for a rare walk from time to time, but again with lots of extra precautions in place. Noah doesn't use his wheelchair when we go, due to risks of germs on his wheels. But he enjoys being in the backpack carrier, high up and unable to touch anything! When we do go out, we are always worried. We always pick very isolated routes from home to try and avoid seeing anyone and have wipes and gel to hand. It has certainly made us appreciate stepping outside our front door a million times more.  

Little Bridge House is one of the things we miss the most about normality. We have had our two recent stays cancelled due to COVID-19 and haven't had a stay since just before Christmas. This place is usually our haven, from the hustle and bustle of everyday life.  

Despite being at home, we still very much have the same things to juggle and, in many ways, it is harder to do so. Noah's cares, procedures, the virtual appointments that still can last for up to two hours a piece! Our medical worries are now heightened due to the current situation and managing complex conditions at home without as much support. Not forgetting, home-schooling of course being a new one added to the list, and Stuart still balancing working full time. We therefore miss our little breaks away at LBH, where we can relax and focus solely on family time and making memories. 

We were thrilled to have received a couple of visits recently, with a cupcake and Easter egg delivery and another time a food parcel. Just saying hello, even from a distance brought a smile to all of our faces. 

Our contact is keeping in touch via phone and email regularly and the Sibling Team have checked in with Heidi, which is lovely and helps us not to feel isolated. We look forward to the day when Noah can hug all his favourite people again at LBH, and we can relax in the jacuzzi together.   

Lockdown isn't all bad though! I'm loving having both of my children home and having this extra time with them. Just knowing that Stuart is upstairs, even though he is working is a nice feeling too. And we enjoy being able to have an extra bit of time with him on the days when he takes a lunch break.  

Time is so precious for us all, but even more so when you have a child with life threatening or limiting conditions.

We try to make the most of every single moment and make memories that we will treasure always.

Lockdown hasn't changed that! We've had garden picnics, birthday high teas, a garden campout, sleepovers together in the lounge, splashy paddling pool fun and then warmed up with hot chocolates! We've got crafty, we've danced, baked, laughed and played...the list goes on! We will be taking away a lot of happy memories from lockdown despite the difficult circumstances.  

Yes, there are struggles, yes there are things a million times more difficult for our family now, but there is always something good to find in each day and each situation. We miss our family and friends, but we still have each other. And in this crazy world we are in right now, that is something that we continue to be ever thankful for. Being together is our favourite place to be."