(This page is still very much a work in progress)
I’d like to try and be of some use to people out there who find themselves suddenly thrown into this world of ours.
When we realised about Samuel’s condition and what it would mean, we found it quite difficult initially to get helpful information that was actually useful. Gradually over time through recommendations from people online, things we’ve learned from the community nurses at the hospital and from our own research we’ve cobbled together a rough list of what I can only call, useful stuff.
We are still quite new to all this so in no way is this list complete, so if you know of anything that would be useful to include, please let me know as soon as possible.
Things to think about or look into if you haven’t already:
Benefits
As a family we get Child Benefit, Child Tax Credits , Samuel gets Disability Living Allowance (DLA) and I receive Carers Allowance. All of these mean a lot of forms to fill in, but after a while you will find that piles of forms become the norm and I’ve actually found I’ve become quite an expert now!
For completing the DLA form, Cerebra have produced an absolutely fantastic guide. The guide takes you through each stage of applying for DLA, starting from whether you should apply at all, through the Claim Pack box-by-box, with lots of useful hints and tips on preparing for a medical visit, obtaining supporting evidence, keeping a DLA diary and much more.
You can request a printed copy of the DLA guide by calling 0800 328 1159 or emailing info@cerebra.org.uk or you can download and print it yourself.
Personally I would recommend that when you complete the DLA form for the first time you make a photocopy. I know doing so will be very time consuming but when you come to renew, it will make your life much easier!
Do have a look at Cerebra’s website for other useful financial information.
Wills and Trusts
Have you thought about what will happen if you both pop your clogs? What will happen to your child? Bearing in mind neither of the Grandparents are confident to care for Samuel, it suddenly dawned on us that we’d be leaving behind a very complicated situation if the worst happened and we both passed away without having a plan in place.
As wills in this situation aren’t straightforward they solicitors fees will enevitably be more. However Cerebra again can help. They have a Wills and Trusts Voucher scheme to help parents prepare for their child’s long-term future. A voucher is worth £350 towards the cost of having a solicitor prepare a will and discretionary trust to make provision for your child’s future.
Cerebra’s Wills and Trust Voucher scheme is predictably very popular so you may find that when you apply there is no funding left for that year. If that happens speak to your solicitor as they may be able to advise you on where else you can look for financial support for this, such as your local children’s hospice.
Disabled Blue Badge
It was suggested to us to apply for a disabled parking badge to make life easier on ourselves when we are out and about. I phoned up the County Council for advice to see if we would be eligible and was told on the phone that it was unlikely as Samuel didn’t have oxygen but to apply anyway, just in case. So we did and were approved and received our badge permit shortly afterwards. It’s a simple online process and they contact your doctors surgery for a letter to presumably confirm your child’s condition and needs. We have found it to be really useful as when Samuel has a seizure he is very difficult to get in and out of the car so we need the doors to be fully open. It also means that we are near the entrance and exits should we need to leave quickly.
Gastrostomy feeding
Samuel was NG tube fed for around seven months. We had the usual prob
lems of accidently pulling the tube out when we changed him, he’d get his fingers around the tube, stretch and pull it out, his skin would react with the adhesive tape and so on. So it was a great relief when he had the gastrostomy button put in.
I kept on being told prior to the operation that gastrostomies were amazing and we wouldn’t regret it. When Samuel came around from the operation and was miserable, crying and I was so worried about moving him and cuddling him for fear of knocking the button I struggled to agree. But I learned how to feed him and do his medicines and care for the button very quickly and have quite frankly never looked back.
We tend to always do pump feeds as I find that is much better to be able to regulate the speed and when we did to bolus feeds it was always frustrating because if Samuel got agitated or started to cry, the feed would come back up the syringe if he wasn’t held low enough and some feeds seemed to take forever! The pump is really simple to use and we have a specially designed bag that we can put the pump and feed in and have used it everywhere!
If you find it awkward when you are trying to feed your child through their gastrostomy 
button but every time you have to un-popper their vest. Well I’ve stumbled across a website that sells just the thing that might be able to help. Visit www.tummytunnels.com for more information.
Ketogenic Diet
Samuel will hopefully be starting the Ketogenic diet in the not too distant future and we’ve been told about Matthew’s Friends who can offer a lot of support and information.
MORE INFORMATION TO COME
If you have any useful links which you think I or my readers would be interested in please do get in touch using the form below:
