Apologies for the late update, we’ve been away celebrating Kim’s 40th whilst Toby had fun in Helen House.
We dropped him off on Friday and it was lovely to see how happy he was there and how genuinely pleased for us all the staff were, they see it as a great thing that parents can get away and be normal (as normal as we’ll ever be!) for the weekend.
We had a fab time with good friends, good food and lots of good wine and bubbles, Kim felt very loved by all our friends and family but also by some surprises.
The local LION’s have always been supportive of us and on Saturday they too were celebrating their 40th anniversary of the formation of their club with a great evening of food and entertainment. They were raising fund for three local good causes, Jenson’s Fund, William Crook’s Brighter Future Fund, and, you’ve guessed it, Toby. Not only did they plan and deliver a fab evening they took the time to get Kim a card and a bottle of champagne, how lovely is that?
Likewise Nicola and her team at Jane Smith Financial Planning got a card with a thoughtful message inside and local friends and neighbours brought round cards and presents.
They say every cloud has a silver lining, the amount of people we now and are incredibly generous and supportive to us due to Toby’s condition is amazing, we do feel very, very lucky to have you all in our lives.
New Buggy
This morning Toby and I picked up his new buggy kindly provided by wheelchair services, it’s a lot more suitable for Toby as it supports his posture and lies flat easily to support him during a seizure, sadly we’ve already had to test that feature as Toby had too much fun in the soft play at school which caused a full seizure.
As you can see, the new buggy is far more ‘special needs’ which will make it obvious to people that Toby is different, only the other week Toby’s Nanna and Grandpa were all in town and a lady said to them “A big boy like him shouldn’t be in the buggy, let him out to run around in the sunshine”, to be fair, in the old buggy it’s not too obvious about Toby’s disability but I know it hurt my Mum to have to reply “I’d love to but he’s disabled and can’t walk.” I guess this is the world we’re in and the lady was mortified, maybe it’s a lesson for us all not to judge.
It’s sad that Toby’s condition impacts on so many aspects of life like this, my parents had a group of friends over for lunch one Sunday and we took Toby around to say hello, all was good for the first ten minutes or so then bang, he’s convulsing on the floor and needing oxygen as he turned blue much to the horror of everyone. Fortunately, the seizure only lasted a minute or so but it was a brutal demonstration of what we deal with all the time. Everyone was so supportive and understanding while we sat on the floor with an unconscious Toby and fed him through his tube.
Happiness and smiles
Seizures, developmental delay, not walking, talking or eating are all something we deal with daily however the one thing that keeps us going are the smiles.
I don’t know how he does it but Toby is such a smiley little chap, from the moment he wakes up he smiles and laughs and it makes the day so much more bearable.
And that’s before you throw Toby in a ball pit or better still, the bath!
Poo!
I know I’m a typical parent obsessing over Toby’s bowel movements but this is a big thing for us, since we started giving a Blended Diet of real food (with tentative support of our dietician) Toby’s movements have firmed up, we’re not giving drugs to help him ‘go’ (but he does get a few prunes a day) and he’s a lot happier, so much so that he’s aware of his own bodily functions.
In class last week he crawled over to the door and pulled all the symbols off the board until he was left waving one, Natalie his teacher realised that the sign was for the toilet so asked “Would you like to go to the toilet?” He nodded so she took him straight to the loo where he ‘performed’. I can’t describe what a leap forward this is for us and Toby, his teacher even wanted to send email to the whole of the school to celebrate his achievement.
Visitors
Last week we had a visit from our gorgeous friends the Peacock family, we had such a lovely time. To give you a bit of variety Helen has kindly written a piece about what a visit to the O’Grady household now looks like…..so over to Helen.
The Peacock 5 landed at the O’Grady’s on Wednesday afternoon just after Toby had gotten back from school. We descended on a scene of total calmness with lovely cooking smells from the kitchen and the gorgeous Kimmy sitting on the sofa with the beautiful Toby having a quiet tea (through his feeding tube) of home cooked chicken dinner.
After tea Toby was desperate to be outside and Kim (and Toby’s followers, the Peacock 5) walked him to the garage to go and see one of his favourite toys, the lawnmower!!! After he had had his fix he took his gang back outside to play in the sun. We hadn’t been with the O’Gradys for an hour when all the excitement took its toll and Toby had a bad seizure. Team O’Grady saw to all his needs and within a few minutes he was lying postictal on the sofa. Postictal means the period following a seizure. I had not realised quite how much a seizure can take out of a human body. Kim and Tim told us that a two-minute seizure is like running a marathon and that adults who experience seizures report headaches and a feeling of tiredness for up to a week after each seizure. This shocked me. What poor Toby’s body endures daily is phenomenal. He seemed very tired after his recovery sleep and patiently sat in his buggy watching his friends play at the top field.
Kim took Toby back home and when we returned he was happily relaxing watching his favourite Pepper Pig episodes. This is vital down time for his little brain and it’s a lovely opportunity to have a relax and a cuddle. He loves the dinosaur episode and his beautiful little giggle when I roared in his ear melted my heart. I was so impressed with Toby’s understanding of speech and instructions. An example of this was when we were watching Pepper Pig. He tried to get off the sofa and Kim said, ‘No Toby. You are not allowed to bang the TV or I will turn it off’. After about ten minutes Kim left the room. She must have been out the room for one second when Toby made to get off the sofa to go to the TV. Strict Aunty Helen had to make an appearance and I repeated Kimmy’s threat to turn it off!
I helped Kimmy put Toby to bed and had the pleasure of reading ‘My Mum’ to him. He was only really interested in the one page, the one with a lion on it as he likes the reader to roar loudly. As soon as we had finished the book he threw himself down into his lovely bed, clearly delighted to be there.
We had a lovely evening with ‘The Ims’. Fantastic food and company and at a reasonable hour we said our farewells and went to our hotel (the Premier Inn at Billing).
Toby was at school the next day so we whiled away the hours waiting for him to get back wondering round beautiful Olney and having extreme fun with the wonderful Kimmy.
We all welcomed Toby home from school and had some lovely play time in the playroom, reading books, playing with noisy toys, watching Pepper Pig and playing with a scrunchy newspaper. Unfortunately, this resulted in another big seizure requiring oxygen. It is such a shame how normal childhood experiences can result in such outcomes for Toby. I was very shocked by the impact of this seizure on Toby’s little body. He seemed to have lost all his strength. He kept having to rest his head down on the sofa when he was playing and struggled crawling or walking (with support) at all. It was heart-breaking to see. He is such an amazing little boy. Even though he was clearly shattered he still managed that beautiful smile when he looks at you and grins and his giggle is just wonderful. He seemed even more happy to be in bed when I had the pleasure of putting him in there!
We had another lovely evening with Kim and Tim with an amazing curry (cooked mainly by Charlie as Tim even managed to find the energy, patience and time to give him a full cookery lesson) and a great reminisce (to include watching a ten year old(!) wedding DVD.
We thoroughly enjoyed our trip to Olney to see our amazing friends. Their strength, love, perseverance, respect and kindness will always fill me with awe. Toby’s beautiful personality is an absolute accolade to my two wonderful friends who would leave no stone unturned to make life as fulfilling and rewarding as possible for him.
Life has a habit of throwing challenges at all of us, often they’re not pleasant but when we heard from a family we went to NCT antenatal classes with have had the devastating news that Nicole has breast cancer it really shook us. We often think of them and wish we could help more, it’s a real lesson in life that you don’t know what is around the corner so make the most of every day, no matter how crappy it may seem.
Thank you as ever for reading, commenting and supporting us, it means so much to all of us.