Haemophilia & Elliot: 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.