My life with Haemophilia

My dad popped round today to very kindly change a couple of failed window units, whilst we sat about chatting he told me of a video he had seen on the Haemo facebook page about two little boys dealing with their condition and overcoming the bruises and bleeds, it brought a tear to my eye but it was also great to see other people facing the same stuff and still playing football and other crazy stuff.

https://www.youtube.com/watch?v=xXf5lHyB1us

Disease Vs Disorder

This also led me to have a look on YouTube for Haemo related videos and their are a few one that was good but bugged me because it called Haemo a disease which does not sit well with me because it is actually a disorder I think the two words say two completely different things. Any way I came across another great little video by the kid above and think it's a nice one to show Elliot when he gets bigger

Mummy shares and Bag Essentials

Help another Haemo Mummy

I got a call from my Haemo nurse Alison yesterday, I was surprised, it was nice to chat to her about Elliot with out having any concerns for once! I was also touched when Alison asked me if I would talk to another mummy who has just had her son diagnosed with Severe Haemophilia A just like my little man, I thought wow, yeah it would be great to help another mummy with the same worries and concerns I had 17 months ago, so I got the new mummy's number and had to think a little about how to break the ice with a text.

I phoned up mummy, Kate, and had a great conversation for a good half an hour about Elliot and how the condition has affected us, I told her everything I could think of that I would of like to of known. The main thing is to not think about Haemo until her little baby Zak starts to crawl as he is only a week old and can not get up to much mischief yet (ah the fun is all yet to come). Kate was lovely and I feel great that I could have the opportunity to share our life experiences and hopefully calm the initial worries you get when you hear the diagnosis, (it was just like talking to myself, Kate had all the same questions I had).
 I hope you have a look through my blog Kate as I have tried to document all our Haemo adventures not only does it help me to write it all down but also other Haemo families might find understanding and comfort by reading it as I struggled to find anything at my time of research.

Bag Essentials

Mini First Aid

Everywhere I go I take this little kit with me, I keep it in Elliot's change bag just as important as his factor 8. The instant Ice packs are awesome for bangs and bumps when there is nothing else to hand, to be fair I have had to whip it out more for other peoples children. Get a kit like this from amazon. (Better to have it and not need it)

Great for instant cold relief on bumps

These strips are mint because they stick to the skin so when your little boy hurts his Head/Knee and does not want to sit and have a cold pack held on his skin you can just stick this on the affected area and he can go running around forgetting they have a cold strip stuck to them, this was my mums genius idea. If they are ever on offer in the shops I stock up, also you can reuse them a few times just keep the back you peel off and stick it back on when done hey presto. I used one today at playgroup when I saw Elliot teary eyed with a red mark on his head so I stuck one on his head for 10 Min's as he wondered around playing again no problems.

New Year Teething Problems

Bleed Time

17th October 2014

Another bleed this time in Elliot's hand, I think he must have banged it by putting it out to catch himself when falling over, it swelled up quite a bit around the wrist and thumb I had given it a couple of days to see if it would subside but it looked like it was getting bigger and sore so took him to the unit and he was treated straight away with some Factor 8 (big Sigh of relief) Cleared up no problems.

Can't pin point the Date

 Elliot had a bad soft tissue bleed in his right side, we had a hard time with this because we were refused Factor treatment from the hospital as it was not a joint bleed it was not seen to be a major problem, and still trying to not put factor 8 in his system if they can help it so he does not build up any inhibitors.

  Elliot was crying in pain so we took him A&E at about 9:30pm and despite the serious nature of Elliot's Haemo and the Hospital letter stating that he should be seen immediately upon arrival, we were not seen till 11pm! (annoyed because the doctor even though she was very nice just sent us back home, so I self treated him with cold strips stuck to the affected site and a dose of calpol to help with his discomfort, the next day was very hard I tried getting hold of the unit to ask for some advice and no one was available ( I felt so alone) Elliot did not bend down all day didn't really eat anything (not like him) he just wanted to stand in the middle of the living room and watch a film because he was to uncomfortable to play or cuddle, the day after was a different story the hospital was right to not be hasty as his bleed did ease up the 2nd day and he was a lot happier and all the nurses at the unit got back to me but whilst on the phone I could not help myself I just started crying down the phone to Nurse Alison who reassured me (all a bit overwhelming).

Christmas 

Elliot had a great Christmas my first time cooking a xmas dinner for us and my parents and I'm proud to say it was a success and no bruises bumps or bleeds for two months!

Lot's of presents to open and food to eat followed by lovely company and the best unexpected present from my Dad a digital radio for the kitchen (didn't realise how much atmosphere this adds to breakfast, Elliot dancing in the kitchen to Ed Sheeran).
 Evening we went to a big family gathering at my Aunties and Elliot danced his socks off in the kitchen with all the ladies till 11pm, also he would not let go of a mini pork pie all night (did I mention Elliot loves to dance and finds a beat in everything? He has been dancing since he could sit up, kids got rhythm! and I just realised that RHYTHM has not one vowel ...weird)

Teething problems

Bleeding from tooth at Nan and Grandads

Soooo the usual head bumps bruised knees and elbows as per and everything has been pretty quiet and plain sailing up until the past week where Elliot has had teething problems, I remember asking the unit when Elliot was about a month old do Haemo kids have bleeds when teething or losing the milk teeth to be told 'Nooo.. no problems to worry about there'... only yes there is for this Haemo kid!

I have found with Elliot's current teeth bottom and top incisors of which there is four of, have been pretty bleed free, Woke up to a bit of blood on his bed linen and a purple nodule on his big tooth whilst it was pushing through however;

This weekend and last night was very very bleedy, this is his right hand side top and bottom molars that look like they are giving him jip and the appearance of a mini vampire (blood dripping from his mouth) and this morning massacred bed sheets to boot. I asked the Haemo mums on facebook for a bit of advice some had never experienced any trouble with theirs and a couple suggested Tranexamic acid? huh never heard of it? Well I googled and yeah this sounds pretty good, a medicine that helps keep blood clots in place and reduce bleeding, I proceeded to phone our unit to ask for advice and they said they could prescribe Elliot Tran Acid to help his bleeding (I did not ask them for it as I did not want to seem presumptuous, they told me about it.. yay!) so my partner Matt went on a little road trip to the hospital with Elliot and collected the prescription, I gave little man a dose at dinner and will give him three doses a day for the next 4 days, poor little dude .. road to recovery now... 

Bloody sheets from this morning

Any Haemo families out there wondering what may happen to a Haemo kid I hope me sharing helps you xx

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