Prison

My mum visited today and brought the travel cot with her, holy dudey with Elliot being more active and swinging his large cranium around, it provides me with an awesome peace of mind prison, and he rather likes it too!

For just £30 you can get it from here;
http://www.mothercare.com/Mothercare-Jewel-Travel-Cot/743522,default,pd.html

If you look closely you can see Elliot ! :)

I keep singing this to Elliot and it never fails to get a smile
https://www.youtube.com/watch?v=9CwnpYKT_yo

Also if you have a baby play them this trailer and check out their reaction Elliot is obsessed with it;
https://www.youtube.com/watch?v=aMl2tTVwsZA

Fun and Bruises

Yesterday Elliot had a fun filled day with his friend Archie, he was showing off all over the show rolling around and flirting with my friend Gem. Today we have a nice set of bruises for sweet souvenirs;

Elli isn't bothered in the slightest, he has one on either elbow a corker on the back of his head and a small one on his right rib.

 

Gonna buy two sets of the baby knee pads in a min so he can wear them on his elbows too.

 

Milestones

Well to say that I am proud of Elliot is a bit of an understatement he is 7 months today, and he has hit every baby milestone right on target if not before;

I was rewarded with a smile around 6 weeks
Rolling over and saying Da da was at 5 months

He now rolls and slides around our living room floor with ease and his vocabulary consists of;
Da da da
Hiya
Mum - used mainly when he is sad or wants picking up
Na na na
A ball
We think he has said Grand dad but not wholely confirmed

Keep learning Elli mummy and daddy love you loads xxxx

Haemo Friends

The past 7 months have been pretty great as far as Elliot's Haemophillia goes, I try not to worry about the what ifs, and up until I started writing this blog and the problem with his hip It's not something I have really thought about.

I did get quite emotional last week revisiting my feelings about Haemo and putting them out there for the world to see, and I have struggled to find the right support and connections for our family unit, I am not the biggest facebook fan but thought what the hay I will see if there is groups on there and I found a page for the Haemophilia society which is better than their actual website (no offence) and then the people on there suggested I join the North West specific Haemo group so I did which is awesome because they are all in my area and even better then that I found a group specially for Haemo Mummies like myself who are all lovely and very supportive so all in all I am NOT ALONE and it feels great.

I did get the chance to read other peoples blogs too, which is great to see how other people deal with their situations. I did post my blog on my Facebook page just to raise awareness of Haemophilia and I think the reaction was pretty cool, I don't want anyone feeling sorry for us because there are harder things to deal with and Haemo is now very manageable. I did think maybe Elliot wont want people to know because if I didn't tell you you wouldn't know anything was different about him, but then I thought about the bigger picture which is awareness and that will only happen if I share our story and people share it again and again (I hope Elliot wont mind when he gets bigger).
Just a few blogs I have enjoyed reading;
http://bleederbaby.blogspot.co.uk/
http://www.theprmummy.com/
http://atouchofscarlett.blogspot.co.uk/

I tried to find a car sticker that would alert other people and if (touch wood) we had a car accident and needed medical professionals to know Haemo was a factor. I can't really find any good ones in the UK and I don't think the oversea ones are very good so I have designed my own;

Real Nappies

I used to work selling nursery products when I was 17 so I am well prepped in the knowledge of baby products, I always new what pram I would have and I always new I would use proper terry nappies.

I love real nappies they have so many pros to using them;

• They are better for the environment
• they save you hundreds of pounds
• They are suppose to help with potty training because baby knows he his wet
• it worked in the past
• You can use them for if you have more babies

I do on occasion have the odd disposable for Elli if he gets nappy rash or for emergencies when out and about.

Made in England

One of the things I had to contend with was finding nappies that were made in England, Matty has made it his (and mine) mission to try and purchase anything we need from England to help our manufacturers and economy, this all started with a tin opener about 5 years ago. I also wanted to find nappies that did not cost a bomb. After much trawling on the net I found a birth to potty kit made in England for just .... £50 (I am good).
The link to where are got Elliots nappies - http://www.realterrynappies.co.uk/birth-to-potty-kits-17-c.asp

 

The true star of my real nappies is nappy nipper clips, instead of traditional scary sharp pins, these are brilliant inventions that look like a flux capacitor they just cling to the fabric, and with Haemophilia in the background it's like they where made for us.

 

 

Elliots First Blog Post

//ddcxfctfdx bn kjjb bnnnnnnnn,pub#hwxr,'l`OLlllllllllllllllllllllllllllllllllfffffffffffff]
x0o'#.l.FWZ,.'







ihnnnnnnnnnn
v cd =;fdxzu
/]/ pl.UYHhhhhhhhhhhhhhhhhhhhhg;c f

 

 

Elliot seems to have a real love of our laptop, so much so we decided to let him have a go at posting and the above text is the result!

Factor 8

Elliot's hip

Today was the day, the day Elliot had his first dose of factor 8, For the past week, I had noticed Elliot not wanting to lift his left leg, especially when doing his nappy, and it got me thinking maybe he had a problem with his hip. I asked Matty what he thought and he thought Elliot was OK, it was to be fair not that noticeable and it was only when doing his nappy, we thought maybe he was going through an awkward stage and didn't want us doing his nappy.
 Me and Elliot visited my mum on Monday, we had a lovely day we went to the farm to see Willow(her horse) and the cute baby animals, followed by a picnic by the river weaver, my mum did Elliot's nappy and noticed the same thing, Elliot stiffening his left leg and moaning, so I organised a trip to the hospital.

Hospital

We (me and Elliot) got to Manchester Children's Hospital at 10:30am today and saw Haemo expert Alison and a very aptly named nurse Nurse Bloodworth! Alison checked Elliot over and said I had done the right thing as it looked like Elliot either had a small bleed in his hip or bruising, probably due to him being more active and rolling around. Alison then said "we will give Elliot a dose of Factor 8 today". Wow his first ever one, I wish I had brought someone with me, I watched her prepare the Syringe, which was good to see, I have read the instructions myself but there is nothing like seeing it done. Then they had the problem of finding a vein, after one attempt in his arm they found a good one in his wrist and slowly pushed it in, Elliot was the most angry and upset I have ever seen him. It hurt my heart, but was also good to know he had it in his system. He slept for a good hour after and then rolled around on a blanket in the garden with our rabbits like nothing had happened.

Factor 8

Factor 8 for anyone not in the know is an injection that makes Elliot's blood more normal and helps it to clot and heal, we were given one box of the Factor 8 the day we found out about his Haemo, and it is for an emergency, it has to be kept in the fridge, everywhere Elliot goes we take the Factor 8 with us.

A New Hope

I will be trained on how to give Elliot factor 8 when he is on the medication every other day which will be when he is about 2 and then when he turns 11 he will then give it himself. I am hoping for a new way to take the factor so either it lasts for more then a day or a tablet, I know there are trials and studies currently going on for it being a weekly injection.
Below is an article about some of the new treatment that is all happening this year;
http://www.pharmatimes.com/Article/14-03-12/Bayer_invests_500_million_euros_for_haemophilia_A_production.aspx

Speedway Challenge 2014

My Dad (Elliot's Granddad) Manc Rider

My dad is a bit of an adrenalin seeker and has always had an exciting hobby he has a great group of friends that all enjoy riding out on their motorbikes, they even have an Internet forum for their special brand of banter (and for organising events). They call themselves The 'Manc Riders' and have even been all over Europe on a big road trip through France Germany and soon Belgium.

Speedway Challenge for Haemophilia 

Granddad & Elliot x

Now Elliot is here and Haemophilia has touched us all, Manc riders are doing The Speedway Challenge in aid of The Haemophilia Society. The Speedway Challenge is where as individuals they pay to enter and are given a number and a list of all the various speedways they have to visit and have a picture taken at each one, the speedways are all over the country and my dad is number 7. I will update this post with every pic he accomplishes. Good Luck to all the Manc Riders I think they have raised £245 and invaluable awareness of the rare blood disorder!

Speedway Update

Ray Walton & Bez of the Manc Riders are raising some major Haemophilia awareness and I was touched by Ray's blog post about Elliot;
http://trinityzxr750l1.blogspot.co.uk/2014/03/mancriders-speedway-challenge-2014.html?showComment=1395424638922
The Haemophilia Society are doing a story on the Manc Riders Speedway Challenge and may possibly get some press coverage who knows we are going global !

Helmet

My mum purchased a Helmet to protect Elliots precious head it is rather cool and it can grow with him, very useful for the next few months where he is going to get to grips with sitting and crawling, my floor is laminate so you never know.
The Helmet is a 'ok-Baby No Shock' and Elliot does not seemed bothered by it, it gives me piece of mind if he is rolling around in the living room whilst i am making a cup of tea.

Elliot is not on his medication for Haemophilia yet as we want to hold off giving it to him as long as possible so he doesn't grow immune to it,  any protection from needing to use Factor 8 (his medicine) is welcomed with open arms.

Picture of me and Elliot with his new head gear! (thanks mum x)

 

 

 

The helmet costs about £60 but my mum got it from ebay for £30 check out amazon too.

 

Other items I find useful are - Foam floor protector should not cost more then £10 - http://www.softfloorkids.co.uk/?gclid=CKnRg8XZhb0CFWvkwgod26cAWA

 

 

 

and the next item i am going to buy is Knee pads around £5 - http://www.ebay.co.uk/itm/like/271260593408?lpid=83&clk_rvr_id=599486633400&item=271260593408&lgeo=1&vectorid=229508

 

The normal things (that are not so)

I decided to contact the Haemophilia society today to see if me and Elliot could meet some people that are in a similar situation to us, to put my mind t ease and maybe get Elliot a potential friend who understands, well I emailed them so I will let you know if anything happens.

The past 6 months have been brilliant and hard, I mean I worry about all the normal baby things should I start feeding him, is it to hot too cold, does he enjoy his existence? (dramatic) but true, then I have the Haemo worries on top;

Jabs and stabs

No mummy will look forward to taking her baby to get injections, so when we went to the first one- BCG in the arm, I called my mum to come with us for support (she was super), I was quietly pooping it and Elliot was very happy up until the point!
The problem for me was the nurse asked me before the jab " has Elliot been well and is there anything we should know regarding his health?" I replied " he has been great, just want to make sure that you are aware of his Severe Haemophilia?" well the nurse did not know and I don't think she really new what it meant as she asked me to briefly explain, I told her what the experts told me- put at least 15mins of pressure on the area and check to see if it had stopped bleeding, she did the deed and then with Elliot screaming in my mums arms she said " you can not put pressure on this" WHAT ? slight panic,well thank the universe there was no bleeding and pressure was not needed as it was just under the skin at an angle.

Round 2

The next set of jabs (one in each leg and rota virus drops in the mouth-yummy) was a lot more organised and the nurse was great she already had read all the details about Elliot and his Haemophilia and had even phoned the special unit in Manchester to get advice, So she was prepared (great nurse) anywho she did one jab and we put pressure on for 15mins it still had tiny little blobs coming out, so we put pressure on for another 5 mins and still bleeding we put a cotton ball on it and did the other leg put 15mins of pressure and cotton ball and off we went, got home and later that evening I ripped off the medical tape (did not enjoy this) and I was elated to see his legs where healed and fine and no bruises YAY!!!

Round 3

Now we knew how this would play out so we had a half hour appointment booked and did both legs a few seconds between so it would be better for Elliot otherwise you spend 15mins on one leg and he starts to calm down then wham you did the other, this was better and took less time (we are pros at this now).

 

About Me, Elliot and Haemophilia

My name is Toni I am 26 years old and on September 2nd 2013 at 12 mins to midnight, my life changed forever!

I gave birth to Elliot Henry Smith..... 9lb of gorgeous baby boy, I remember everything about the 26 hours of labour- from going in Sunday morning to be induced (he did not want to come out) to the very end (or should I say the beginning?) with Helen the most awesome midwife ever lifting Squirt up and saying "look at what you've got" and placing him on my chest.
Matty kept saying " He's brilliant toe" wiping a tear away, and my mum was blinding us with the camera flash.

This blog is about Haemophillia and my lovely little monster Elliot, Elliot is now 6 months 3 weeks and growing bigger every day (Godzilla of the baby world), he has started Roooaaarr-ing literally.

Love & Worry

You can suck in all the old new crazy annoying sometimes helpful advice, and buy all the baby equipment paint the nursery clean the house, but nothing prepared me for the immense feeling of love and more.. worry, I worry about everything anyway, let alone about the small dependent bundle especially when we have not done any of this before.

Little Bleeder

As you can probably tell, everything was going perfectly for the first two days of Elliot's life, but things changed on the Thursday when the midwife came with her assistant to check on us and do a heel prick (to check that baby does not have any disorders) when the midwife left, we noticed that Elliot had bled quite a bit through the plaster (from the heel prick site) I did a bit of pressure and new plaster and again it carried on bleeding, Matty phoned the midwife and we went to the children's ward where we proceeded to have Elliot poked and stabbed and tested, this was all very upsetting.

We were told that Elliot had an infection, jaundice and we still awaited results about the bleeding, after two days on the children's ward, a special consultant came in our room and exclaimed that he had found the cause of the bleeding which was a bleeding disorder called Haemophilia.

Never heard of it

I don't have Haemophilia and it is not in any of my family history so it was a bit of a shock I learnt that it is usually passed from mothers to sons and is a big hereditary thing, but after me getting tested they found that Elliot is even more special then we thought as he has spontaneously mutated and is Severe Haemophillia Type A.

Sounds scary, I always said I would not wrap my baby up in cotton wool but upon hearing the news first thoughts are I need to not let him get injured protect protect protect, blood is gonna come gushing out, and I might bruise him when I pick him up or change his nappy AAaarrgghhh ........

Touch wood and fingers crossed all the info and help we received made me treat him like I would of anyway, and all has been pretty good so far, Elliot has been rolling over for the past month and I have a feeling things are just about to get interesting....