November was another month of highs and lows for us, the main high being Toby’s birthday!
Where has the past year gone? Difficult to believe that our little boy has been with us for a year already and what a year it has been. Over 100 ambulances, over 20 hospital admissions and enough rescue medication to knock out an elephant but none of that matters when there’s a dinosaur cake with sparklers on it! (Thanks Nanna!)
One thing we’ve really noticed over the last month is Toby’s crawling and standing. He’s been a little behind other children, mostly (we hope) due to all the time in hospital contained in a cot when all he wants to do is move around, however over the last few weeks he’s got up on his feet and his commando crawling would make any squaddie proud.
Toby’s clearly a ladies man already, on the last day of the month we met up with all the other families from our NCT ante-natal group and to show off to Lola he popped up on all fours and crawled properly for the first time!
Sadly over the last month Toby’s seizures have taken a turn for the worse, he had three seizures lasting well over an hour, two of which were during the night. The panic and mad dashes to the hospital in the dark hours are particularly distressing.
We’ve also seen a return of his ‘partial’ seizures where his hands, arms and legs shake. These seizures don’t really affect Toby too much, often just causing a brief pause in whatever he is doing, but to us they are a sign things are building up to a major one and are a real trigger for our anxiety. When he’s having over a hundred a day it does none of us any good.
We believe this change to seizure activity is down to a change in drugs, Toby is now on the last known drug that might help his seizures, so far it doesn’t seem to be working.
We did have an appointment with a neurologist (God in our world now) however it wasn’t our ‘normal’ doctor and we didn’t feel that we made any progress.
Out and about
As with previous months, we’ve been pretty much confined to barracks in November as we’ve either been in hospital with Toby or are too afraid to go out and meet people due to the fear of infection and dealing with a seizure away from home. Every time he gets ill we end up in the Resuscitation room at A&E frightened about where it will end.
Sadly it’s our energy levels that dictate how Toby spends his time, the physical knot of anxiety in my stomach at the thought of what might happen at any time is often crippling and we find ourselves cancelling plans to see friends and family as we’re just too scared to leave the sanctuary of the house and find it difficult to have people here. When we’re at home we have rescue medication in every room, oxygen tanks upstairs and down and a constant dialogue of what our ’emergency plan’ is.
Hopefully over time we will learn to cope with this fear and spread our wings a little. It was tough going to the NCT meet up but the knowledge that we were as close to MK Hospital and more importantly it would be South Central Ambulance Service who we now know on a personal level (I never thought I’d end up Facebook friends with Paramedics because I see them that often!) reassured us so we were brave and managed an hour and a half away from home.
We’ve written before about our gratitude to so many people for things they have done and have planned and November was no different, the kindness keeps on overwhelming us.
From friends & family delivering food parcels when we’re in or just out from hospital to gifts from friends and neighbours we are very lucky.
Our families, who are struggling to come to terms with this as much as we are, are a constant source of strength and support to us practically and emotionally. We are all learning to adjust to our new lives.
We try not to post too often on Facebook as we don’t want to bore people with our plight however when we do the comments of encouragement, love and support really do keep us going through the tough times, thank you.
Over the last month a few pieces of the jigsaw have started to slot together and we had a great meeting with our Social Worker and PORTAGE. Portage provide education through play and come to our home to work with Toby on any areas where his development is behind. Having never accessed any of our social services before I didn’t know what to expect all I can say is, when you ask the right question and get the right service it’s amazing.
It’s knowing that right question to ask that’s the hard part!
The system isn’t perfect but it is incredible we live in a country where these services are offered and can be accessed, we feel very lucky.
Even the ambulance service have gone a step further than they needed to. I created a form with all Toby’s current medical info on it as it’s useful to give to ambulance crews, A&E doctors and ward nurses, to make life a little easier the ambulance service have now ‘sponsored’ my form with their logos and details to make it more official. It may seem a trivial thing but this really is over their normal ‘day job’ and does make life easier. We’re lucky to such a fantastic service supporting us.
Hospice is a scary word and our initial meeting there was with trepidation however the care team and doctors who ‘assessed’ us couldn’t have been more understanding, caring and knowledgeable about us as a family so we were very pleased to be invited to stay.
All the children’s room are located of one large central corridor and are essentially super nice hospital rooms with hoists, oxygen and a whole host of other equipment but they are comfortable, well decorated and have massive windows looking over a beautiful garden.
There is an enormous play room with sensory walls, ‘magic carpet’ (interactive computer animation) and art area not to mention more toys than any child could dream of.
Then there are the staff. Most of the care team have worked there for 10+ years and are registered nurses, many are specialist intensive care nurses, some are doing Masters degrees in nursing, they really care. They also have extensive experience of dealing with families struggling to manage their child’s illness, they are there for all of us and the way they treated us was like being given a big hug from people who really understand.
Helen & Douglas House also employ all their own doctors, they work part time in the hospice and part time elsewhere so there are GP’s, oncologists, consultants from Great Ormond St etc on call 24/7. It’s incredible!
We even felt so secure that we left Toby and went for some drinks and a big night out, never fear, we were back at Helen House and in bed by 9pm!
What Helen House gives us is the ability to switch off. They would come and get us if there is an emergency but we don’t have to be the ones constantly vigilant to seizures. I can’t describe the feeling of actually letting yourself go to sleep properly, we normally can’t do this and only ever nap through the night as we have to be alert to Toby and anything that happens.
We now know what respite really means.
In it to win it
I know a lot of people have supported Toby’s Trust already and we’re really grateful. If you would like to donate to a fantastic cause whilst also being in with a chance of winning then I’d love it if some of you reading this would sign up for the Helen & Douglas House weekly lottery.
They’ve raised over £6m through this funding stream alone, this sounds like a huge amount of money (and it is) but that doesn’t cover their running costs for one year. So, gamble away and know you’re doing it for a great cause.