Self Medicating/ Care at home

Everywhere we go

I take a first aid kit with me Elliot's Factor 8 in a cooler bag a cold bruise soother in with the factor 8, cotton pads witch Hazel and Arnica cream, I tend to Elliots bruises and bangs as much as possible and when my mum ha him she really goes the extra mile, I like to cover a cotton pad in witch hazel and when he is asleep I put it on his bruises and leave it there to soak in to his skin, arnica cream is like magic, I had never heard of it but my mum told me about a lady she worked with who used to work in a chemist mentioning Arnica a long way back and that it was great for bruises, I thought it was a bit of hibijibi mombojumbo but it is really great.

Yesterday was Busy

Factor 8 Round 3

I noticed Saturday afternoon a small blue mark under Elliot's testicles when changing his nappy and wondered was it the start of a bleed/bruise, Elliot was not it any discomfort so I just thought I would keep an eye on it. Sunday morning and it was darker and bigger and more swollen, maybe he had sat down to fast? I don't know I kept an eye on it all day and thought I'd give it a little more time as I didn't want to rush him to hospital if it was unnecessary ( he only had a bleed and a dose of factor a couple of weeks ago.
Monday morning it looked pretty swollen and with it being a sensitive and delicate area I took him to the hospital to get the specialists to look at it, they took one look and said they would give him some treatment (factor 8). Elliot is so mobile now, with crawling and pulling himself up, he is like a little wild creature full of beans into everything and everywhere! The bruise has come out more and looks like it might be changing colour.

Monday Evening

Uncle Jon and Laura babysat Elliot for the first time and did an amazing job, hopefully Elliot didn't make it to hard for them because I would love to go out again, and it's nice bonding for them. I went to the Belle Vue Speedway it was great to watch Belle Vue Vs Birmingham Brummies I went with my parents, and we are planning on seeing another one soon. Belle Vue won 51 - 39! My dad said there is a speedway you can have a go on with no experience, I wouldn't mind having a go. We saw quite a lot of kids at Belle Vue watching the race, and there was two boys in particular that made me think of Elliot, one was sat being very good with his dad, and the other was swinging around in the woodland making mischief, and I said to my mum I hope Elliot is calm like the one sat their but I have a funny feeling he is gonna be like the one playing with sticks in the wood ripping his pants ( Elliot is already showing signs that he is very adventurous)

Nanna & Granddad at Belle Vue Speedway 

Questions from strangers

Elliot has gained a great collection of whopping bruises all of them easy to conceal, apart from his latest which is smack bang in the middle of his forehead and looks really bad (it was hardly anything when it happened, but looks quite unsightly), this gives strangers in the supermarket, at swimming, at baby group a nice conversation starter like;
"AWWww has he fallen over?"
"Have you had that looked at?"
"What's happened there then?"
"I bet you felt awful when that happened?"
 and so on and so on!
I don't quite know what to say, I have just been saying he is a bit wild and adventurous, you mention Haemophilia and it opens up whole new question
"What's that?"
"Will he get better?"
It's nice that people care and want to talk, but all I'm trying to do is buy some bloody bread, I think I might where a t-shirt that says 'My kid has Haemophilia look it up'! I feel I have to tell some people especially yesterday as we had a heat wave and I had to put Elli in light clothes so he had his arms, legs and head on display and like I said he has a few good bruises, and I don't want people thinking he is abused. I can't work it out he has a big fall and no bruise and a small knock and a gigantic whopper comes out?

Disability Living Allowance

DLA

Trying to fill in the DLA form, it helps that my mum filled in quite a lot of it which I am gonna use as a rough copy and rewrite it in my own words, hopefully I will get something from the government, as Elliot's condition is very unpredictable and if we have a bad day like a bleed or a bump it can upset a whole week of plans.
https://www.gov.uk/disability-living-allowance-children/overview

Bleed No 2

2 weeks ago Elliot had his second bleed, I discovered this when I was picking him up and he was crying in pain and letting his right arm flop, it was a strange one because when he was left to his own devises crawling and playing he was using both his arms and seemed okay, he was off his food a bit and more moany but I thought maybe he was teething, just to be safe me and  Matt took Elliot to the Haemo unit first thing Monday morning to get him checked. Went in to the Specialists office and they asked us a few questions and wiggled Elliot's arms about and Elli did not cry or flinch almost like nothing was wrong. So we went home and I felt a bit OTT for taking him all that way and there being nothing wrong. The nurse said there would be a swelling and heat if it was a bleed.
Next morning I was changing Elli and he was very upset, I had a good look at his right arm and rib and there was a definite swelling and a funny blotchy bruise, so I phoned the Nurse and took him straight back in, when the Nurses saw Elliot without his cloths on she confirmed that he had a soft tissue bleed and he will need his second dose of Factor 8, and a lot of care and low activity for a week, so I had to cancel all plans and try to not let Elliot explore as vigorously as he likes to do.
It turned green and two hours after the injection Elliot was a different baby almost like a relief had come over him.

Soft tissue bleed changing colour (healing)

This Promoted me to seek some kind of financial help that we may be entitled to especially after reading the Haemo facebook page and all the mums were discussing DLA and that they are claiming it for all the extra care the give and the many other aspects about having a child with a severe blood condition. So watch this space.

More Milestones

Just before Elliot was due to turn 8 months we had a bumper week, Elliot sat up on his own started dancing ( bouncing on his bottom to any and every funky beat going), two of his very first peggies (teeth) burst through his bottom gum, he started pointing, also he started crawling which means his knees are taking a bit of a beating, and whilst he had a weekend at my parents he pulled himself up for the first time! Very proud of our little creature, but a whole new set of worries has opened up too.

Haemo Trip

A couple of nights ago I got a phone call from Sue who is part of the Haemophilia society North west, she asked if we would like to join in with a special Haemophilia trip to Chester Zoo, of course I snapped up the chance, it's on the 1st June very excited to meet other people who are in our situation, it was also great to chat to Sue because her son who is now in his twenties has severe Haemophilia and she found out when he was a day old he had mutated it just like Elliot! (very rare, did not think I would talk to someone who has had the same experience as me) I got to ask about her son and how he is with his Haemo, gonna take each day as it comes but I think it will be interesting.

 Nice Haemo story

http://www.edinburghnews.scotsman.com/news/health/buddy-award-for-boy-who-helps-haemophiliac-friend-1-3404827

Elliot Growing up so fast!

Mega Speedway Challenge 2014 Update

Mega Speedway Challenge 2014 Update

Elliot's Granddad has been mega busy ticking off 12 of the 40 Speedway tracks from the Speedway challenge;


Plymouth

Poole

Somerset



Isle of Wight

Eastbourne

 

                                  
                                                                       Skegness

                                 
                                                                         Sheffield

Belle Vue

 

BCA

                                                                       White City

                                                                        Ellesmere

Badges

Granddad is also Collecting all the badges from the tracks to make a special gift for Elliot which is proving a little difficult because a lot of the speedways don't exist anymore or only existed for a short time for instance one of the badges only dates 1948 to 1952 The Fleetwood Flyers (very rare)! Currently he has 35 of the badges (he is now an expert)

More Speedways

Next weekend the plan is to tick off another 7 around Birmingham and Coventry and on the 7th June he has a trip upto Scotland with his friend Kev (hope the weather is good for them).

Up Close

This Monday the 12th we have been inspired by the challenge to actually go and watch a speedway race at Belle Vue in Manchester, we are watching Belle Vue Aces VS Kings Lynn Stars quite excited to watch one I have never seen any kind of race other then on the TV, Elliot is being babysat by his Uncle Jon and Lovely Laura so I wish them luck.