Epilepsy and seizures are proving to be one of the scariest and most frustrating aspects of little G's short life so far. Today has been a particularly bad day for whatever reason. He has spent most the day looking at the back of my phone, whilst I film his seizures to be reviewed by the epilepsy team.
When leaving the NICU George's seizures presented as full body tremors and lip tremors but during his 6 short months we are seeing them change. Some we are becoming hardened to but others frighten the life out of us.
Natalie and I are now networking with Epilepsy specialists and other families that are sadly experiencing similar with their children. Although it's comforting for us to hear from other families, it's sad to know that other children and families are struggling with similar. Even more upsetting is that some are worse off.
The siezures are scary and distressing to witness but they also provide a reality check to the position that we find ourselves in. During our consultation with the surgeon who will operate on George to fit his peg, allowing him to be fed direct into his stomach. He explained that one of the benefits of the surgery reported by other families was that post surgery, people see the child and not the illness. This is because there is no longer a requirement for the NG tube fed through the nose.
George presents as a reasonably healthy baby to the untrained eye apart from the NG tube in his nose and tape on his cheek. We have found on many occasions that his tube stimulates conversation. I don't recall a single stranger stating what a lovely baby boy he looks, instead Natalie and I are confronted with "aww, what's wrong with him?"
I personally try to shut down the conversation by explaining that he is a very poorly baby and is under the care of the hopehouse hospice. This usually works pretty quickly due to the mention of the hospice but it shouldn't be like this. He's our amazing baby boy and we shouldn't have to justify why he's fed through an NG tube.
George has enriched mine and Natalie lives so much. He's difficult to look after and it's heartbreaking pumping him full of drugs to ensure he's comfortable but that's our life as a family and we are extremely grateful for each other.
As George grows and his conditions become more apparent, I can't help but mourne the child that we dreamt of. It seems selfish but we spent 9 months dreaming of our future, planing our dreams and aspirations that may now not be achievable.
When George was born I found it difficult to accept people's congratulations. Congratulations for what? I would think. My wife was extremely poorly in one hospital whilst my newborn son was in critical condition in another.
Fortunately I am sat in the comfort of our forever home that Natalie and I have dreamed of, Natalie is tucked up nicely in bed and George is lay in his nest on the sofa awaiting his final drugs of the night.
I feel so lucky to have a loving wife and the most amazing child anyone could ever wish for, but equally sad that things aren't quite as we hoped.
George continues to amaze us every day and we continue to work hard with him but it's so difficult when he's pained or upset especially when there's nothing we can do to help him. He's such an amazing baby boy, he inspires me everyday. The amount of pain and suffering he has put up with in his short life would break a lesser mortal, but still he continues to defy all odds and reach milestones many predicted that he wouldn't. As parents Natalie and I could not be prouder of our little miracle.
Many of you will be aware that the hopehouse hospice have been monumental in supporting George, Natalie and I. We have also been extremely fortunate to have been supported by almost 250 sponsors receiving over £9k towards George's fund for the pool which has provided a beautiful set up to provide him with hydrotherapy at home. Every time we enter the pool with George I think how lucky we are to have been helped by so many. I like to think that George has touched everyone of the sponsors lives in some way and I'm sure he has, otherwise they wouldn't have donated.
As a result, George is now receiving regular hydrotherapy at home but there has been an even bigger benefit from our gofundme campaign. A benefit that may not have been achieved if we had bottled going live with the campaign which was a consideration as we were really uncomfortable with it initially. The bigger benefit is the raised profile of the hopehouse hospice. We feel so proud that off the back of our gofundme campaign several sponsors that have donated to George are undertaking sponsored events to raise money for charity and their chosen charity is now hopehouse and between them they will be raising thousands of pounds for hopehouse.
We have met several families requiring the services of hopehouse hospice, all experiencing the most horrific times of our lives but all putting a positive spin on it and ensuring that our children are as happy and comfortable as possible whilst they are with us.
It's so comforting to think that off the back of our personal campaign to help provide for our special boy, we are helping to ensure that hopehouse can continue to provide their vital services to families like ours. All united with the most heartbreaking scenario of the likelihood of losing a child. It is definitely not a club that anyone would want to join but for us unfortunate members, the hopehouse hospice really do help make things that little bit easier.
Hopehouse will forever be part of our lives and we will continue to support them as our charity of choice. Having never expected to need charity it is during our time of crisis that we have now seen the importance of such organisations. We never want anyone to experience what we have as a family, but we need to ensure that any family in a situation similar to ours receive the much needed support that we have received from hopehouse.
Comments