Haemophilia Challenge 2014 Completed

Elliot & Granddad in Becks Chippy 

A big congratulations to all the Manc Riders who raised money and vital awareness for Haemophilia, we are especially proud of Granddad for visiting all 40 Speedway sites a big achievement considering some of them don't even exist anymore! Well Done Bez for organising this and to Kev for keeping Grandad company and to Ray for doing it super quick! I am sure Elliot will be proud when he gets bigger and understands what you all did, well done xxxx   

Last 1 Stoke!

Scunthorpe

Leicester

Peterborough

Kings Lynn

Mildenhall

 Ipswich

Essex Lakeside

Rye house

Coventry

Birmingham

Wolverhampton

 Kent (Sittingbourne)

Fleetwood

Good Times are a factor

Elliot's 1st Birthday!

2nd September we had an awesome day Elliot turned 1 and had no idea what the day would entail, so as all his favourite people started arriving at our house I think he began to realise that it was a special day, it was great to have both sides of our family under the same roof again, the last time that happened was Matt's surprise 30th birthday.
The fun unravelled with Elliot's Great Aunt, Gran, Grandpa, Great Grandad, Great cousins, Nana and Grandad, aunt and uncle, Great Grandma and Great Granddad. So many gifts and the best birthday cake a boy could ask for which I stayed up baking till midnight the night before.

 Elliot's 1st Holiday!

We packed up and drove down to St Ives on the 6th September for two weeks in the sun lots of good food and playing in the sand with Nana and Granddad. Meeting us there was an added bonus, Elliot had never seen the sea or sand before and he loved it.  He wasn't a big fan when he ate some of it though. The sun did his bruises the world of good and he even started taking a few steps.

Factor 8 round 5 and 6

Despite all the care Elliot received from 4 grown ups, Elliot had a bleed. I noticed on the 15th September when we went to The Firehouse Restaurant and Elliot was uncomfortable and very sad throughout the meal, so I put him straight to bed. The next day I was picking Elliot up and he didn't want to bend his legs and cried if I put him down, so I changed his bum and noticed a large hot swelling on his right bum cheek it looked super sore, so I got a second opinion from my mum and we all decided to take him to A&E at Truro Hospital.

A long wait ensued and even though the medical professionals were told about Elliot's condition and given all the info we had to wait 3 hours.  This was so stressful because we arrived at 5:30pm and didn't leave till after 9pm! It felt like the nurses were scared to treat him because the condition is so rare they kept putting it off, I got asked if the jab was to be delivered in to the muscle, NOOOoo it's a blood product and must go in his vein. Despite they wait he had his jab and we went back to the apartment for a good kip.

My Birthday 17th September

We had a lovely early morning I was spoilt and Elliot looked a lot more comfortable after his jab all the bumps on his head had healed over night (Factor 8 is magic), we had an appointment with the hospital for 10:30am to check his bleed and also give him more Factor if needed. Well I checked his bum before we left and the swelling looked a little bit bigger, so he needed another dose. We were met with confusion at the Haematology desk as they did not know we had an appointment, despite this, the head of Haemo saw us straight away even though he did not treat children, he was great but was disappointed that the hospital had not been informed about our holiday from Manchester Hospital and that we had to wait so long the night before as we should of been treated straight away.  He said that Elliot needed more Factor and instead of a dose of 250 he was to be given 500.

We took Elliot upstairs to the Paediatrics department, and even though the nurses were all lovely again they made us wait until past 2pm before they would attempt anything.  We were asked if he would like numbing cream and we said yes he hasn't had it before but if it takes the sting out of it then great, in the end they didn't even use the sites they added the cream too!.  We were also told once they had the cannula in they would take blood to check his inhibitor levels and give him the Factor in the same one........Well that did not happen either,  they took the blood after stabbing him in the elbow wrist and feet and then they left us for another hour before trying to get another vein to deliver the factor 8. This was really frustrating Elliot was so upset, I even shed a tear in the end. We left the hospital after 3pm and tried to recover what was left of my birthday, good to know that Elliot had so much factor in his system.

It made me realise how amazing the Manchester Children's Haemo unit is, the Nurses are so great, they want to see you and get it done and dusted within 15mins tops because they understand that bleeds need to be sorted ASAP and that it causes less stress for Elliot.

I am thankful to Truro but I do feel like they need a bit more knowledge and training.

Elliot stopped trying to walk for about a week after that bleed but he is up and about now and nothing stops him, the holiday was great apart from that blip.  

Haemo Friends

We met up with a lovely couple called Andy and Cathy through my dad paying respects for Andy's relatives who died in the war and are buried in Belgium, my dad spoke to Andy over social media and when he went on his motorbike trip laid a cross down for him. Andy has Severe Haemo A just like Elliot and is in his 60's his daughter is a carrier and his Grandson Rocco has Severe Haemo A they live at the Lizard peninsula. We met up for a meal and had a lovely time asked lots of questions and made some new friends!

DLA Granted and Notice Served

Had a few corking bruises, but nothing serious, only one trip to the hospital last Tuesday to check a bad bruise on Elliot's knee, no treatment needed, but it was good to get it looked at as with Haemo you never know (to quote Elliot's Gran "always air on the side of caution")

Tantrums are coming, Elliot is also discovering the awesome power of throwing himself backwards when he is not getting what he wants, I just tell him no, let him cry it out on his own and when he stops (which is quite quickly) I give him all my attention and try to explain to him what's not acceptable. Again we have been pretty busy, Elliot has been learning lots he is so close to walking and talking and he is learning where all his body parts are.He Loves music and dancing and having a good strum on a guitar or hitting a drum which was very apparent on Sunday when we went to see my mum with the band 'The Continentals' at Northgate festival. 

Notice Served and DLA + CA = No money stress

I handed in my notice at the craft barn, 4th August was when it all finished. So now I just devote my time to caring for Elliot, This has all worked out quite well because Elliot was granted Disability Living Allowance and I was granted Careers Allowance so I can still afford to have my car for taking Elliot out and about (great for the many hospital trips).

Grandad Haemo Challenge Nearly complete! Just two more to go

Cardiff Millennium stadium, Swindon Robbins and Newport Wasps.

Busy Busy Busy

Chester Zoo and Haemo too

We took Elliot to Chester Zoo on the 1st of June to join in with the Haemophilia Society North West.  Elliot loved it, not only was it a a gorgeous day sun was shining and the Animals were brilliant but we also met some lovely people and families all with different blood conditions. At lunch we managed to sit down with the Haemo peeps, it was cool to see a little boy called Declan and his lovely mummy Sammy.  Dec is 5 years old and has a port he was uber cool and full of beans playing on the park whilst I was listening to Sammy regarding all the things that she has had to deal with, one of the things that she stressed upon was when she took Dec to a hospital for emergency treatment she found it difficult to get the point across that the bleeding finger is the problem not the massive bruise on his head. I think because Haemo is quite rare a lot of the regular nurses who deal with a wide and varied amount of issues in A&E don't know to much about Haemo. We will definitely join in with Haemophilia Society outings again, I've heard the AGM is a good one as they have Haemo experts doing talks and ready to have their brained picked.

Chester Zoo 1st June

Granddad's Been Busy Too

Bradford and Halifax May 21st 

On the 7th June Elliot's Granddad went with his best mate Kev to tick off a few more Speedways on the Haemophilia Challenge and they journeyed all the way up to Scotland on their motorbikes in the pouring rain here are the pictures of the Speedways they did:

A New friend they met on the way Patrick what a cutey x

Factor 8 round 4

(Thurs 12th June) About a week after the Zoo I didn't like the look of Elliot's right arm it was bruised and swollen and feeling warmer then the average bruise so another trip to Manchester Haemo Unit (becoming second nature), whilst we were waiting Elliot made friends with a cute kid called Michael.  Nurse Alison was a bit dubious but decided to give Elli some treatment just to be safe, it cleared right up and helped with all his other bumps. Having said that a week after his arm healed his left arm is doing the same thing but I'm just taking day by day and hoping it will go of it's own accord which it seems to be and it doesn't look like it's causing Elliot any discomfort which is the main thing.

Today Elliot had his 9 month Developmental check and passed with flying colours, he's so clever  love you Elliot xxx

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.