Stuck between a shed and a hard place

November 4 2016

We’re over the trauma of wobbly teeth but don’t think that means we have been blessed with an incident free week. If only! Felix is now having regular after school playdates at his friend’s house. We made the decision to only allow him to go on high days – to save my anxiety. He managed to surpass himself this week though. For reasons known only to the boy he decided to squeeze himself in the space between their shed and a brick wall; a space that was smaller than his head. Rather than reverse at the request of his friend’s mother he decided to continue to force his way through. Let me tell you the immovable object won – an unstoppable force the boy was not.

Now the upside of this was that the tale provided some amusement for the staff at school the following day as I explained how he came about his bruising, cuts and grazes. The downside was that at the time it was far from funny – especially because I didn’t find out about his adventures until a good hour or two after he had done it when I went to collect him. Not wanting to make his friend’s parents feel guilty I made light of the “oh well we’ll probably have to give him some treatment before bedtime” in response to the “I’m really sorry he hurt himself but he seems fine now”.

I’m still working out the line to tread with other parents. How much to say, what to tell them. I don’t want to freak anyone out or have them too scared to invite him but I’m thinking I might be better to share a little bit more – at least while he will insist on putting himself places where it doesn’t fit!

Posted by: Honor Read Honor's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0025 August 2016

Another childhood milestone with a haemophilia twist

October 24 2016

In last few weeks we’ve reached another childhood milestone – the loss of Felix’s first baby teeth. This was a bit of a shock all round for me and a little bit of a shock for the boy. Firstly, I had it in my head that children start to lose teeth somewhere around 6-7yrs – clearly I was wrong about this. Not thinking this was something that was on the horizon meant that we hadn’t really prepared Felix for the fact his teeth would be falling out. Needless to say he was a little concerned at first!

That dealt with, we then had a second shock – the bleeding that came with the wobbly teeth. So, of course, Felix doesn’t do things by halves which meant we had two, not one wobbly tooth to deal with. Both teeth took their time in leaving. Other Mums and our centre had allayed fears about losing teeth when we asked every question we could think of when he was a baby. However, our reality seemed a little different. His wobbly teeth were cutting into his gums which then bled, and bled, and bled. Not a lot but for hours at a time. We dosed him up on tranexamic acid on top of his regular prophylaxis but they still bled.

In the end we took matters into our own hands when I decided to assist Felix in brushing his tooth and “accidentally” knocked the first one out while cleaning. The second followed two days later shooting high into the air as he bit down and then the bleeding stopped. Almost immediately. Can’t wait for the next one to fall out!

Posted by: Honor Read Honor's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0025 August 2016

Port panic but glad the school responds

June 30 2016

So this week was uneventful but we still managed to have a panicked phone call from school “we are concerned about his port, we’ve never seen it look like this.” This was not news I wanted to hear having only treated him a few hours ago before school this morning. I decided that as school were saying he was well and not complaining of pain, and there had been nothing that concerned me about his port this morning I wouldn’t go through the fuss of coming into school to have a look at it and instead wait until I picked him up.

Turns out this was good choice. When I asked Felix if I could see "Mr Bump" (our name for his port) he happily showed me. It looked fine, a little bruised, but not sore or inflamed. The bruise was not unexpected. This morning he had bled more than usual after the gripper needle was removed and he is not so good at applying pressure while he holds the dressing on, preferring instead to watch in awe at the blood. Despite the fuss I am really grateful Felix has such a concerned, caring, and responsive school. I’d much prefer to be allowed to make the judgment call than find out retrospectively that the school were concerned but didn’t ask for advice.

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UK-ROI/MG10/16-0012 May 2016

Parental paranoia: the perils of playdates

June 17 2016

We made it through the playdate and were feeling chuffed. The feeling didn’t last long. An hour or so after getting home Felix started complaining his leg hurt and explained he had “bent it in a funny way” while running around his friend’s house. We checked his leg, no heat in his knee or ankle, no redness no swelling. His muscles were soft. No evidence of a bleed yet so no need to treat. By bedtime he is still complaining but now has added a limp. Again we check but there is no evidence of a joint or muscle bleed.

Now this is where it gets tricky for us haemo parents. Normally the stakes are pretty low if you decide to wait out what you believe is your child’s theatrical stunt but not so when your child has a bleeding disorder. It could be nothing. It could be a hip bleed which are notoriously difficult to spot early. I decide to do a quick physio check on the boy before bedtime; full movement without pain equals no treatment anything less and we’ll play it safe and dose tonight. All the fuss and bother along with the talk of treatment before bedtime suddenly changed the child’s mind “it has stopped hurting now Mummy”.

You’d think this would put my mind at ease but not so much – does he think this is what I want to hear? Is he just saying this to avoid a needle before bed? Turns out we made the right decision. No treatment and in the morning Felix was full of beans and bouncing around.

Posted by: Honor Read Honor's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0012 May 2016

As the boys get older it seems to get easier

May 20 2016

I was sitting thinking how different our lives are in certain ways as the boys are getting older. Still very busy and always something going on but just different. When they was all younger we could be up the hospital/haemophilia centre weekly or monthly for appointments or something but now we only seem to be going for our six monthly appointments. It seems as the boys get older they are helping to manage their haemophilia as much as I am and it seems easier. I know there could still be some bumpy times ahead of us and I always keep an open mind about it, but life is really good.

Posted by: Tracy Read Tracy's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0007 April 2016

Go with the rhythm of haemophilia

May 9 2016

Felix is now completely settled into school. He loves it. We do too I have to add. We haven’t gone down the route of seeking out additional funding for him via an Education Health Care Plan (the new statements) because we just don’t need to. There isn’t anything he needs that the school can’t offer. They consult us over injuries when they occur (which thankfully is almost never) and respond enthusiastically when we forward through resources for staff to help them understand haemophilia better or improve their practical skills like how to spot a joint bleed. I feel really lucky to be able to say this as Felix has both haemophilia and autism to contend with. He is currently managing both with aplomb.

We have tried to channel his confidence into new activities after school including dance and gymnastics but so far he is having none of it. He was offered rugby club too, but I just think, why encourage something that will cause problems later on? We don’t want to hold him back but have, from the very beginning, tried to encourage him to go with the rhythm of haemophilia by talking about “high days” and “low days”. High days are for lots of physical activities and risk taking; low days are for down time playing with the tablet or Wii, or being creative with paints, pens, and glue. No days are dull but so far all days have been bleed free.

Posted by: Honor Read Honor's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0007 April 2016

I’ve always wanted to take them to Cyprus

May 4 2016

I have booked our family holiday for this year; we will be going to Cyprus for 2 weeks in August. We have stayed in the hotel before but the boys have never been and I have always wanted to take them to Cyprus. So looking forward it, there are lots of things to go and see. As it’s for 2 weeks it will be relaxing and still have plenty of adventures.

Posted by: Tracy Read Tracy's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0007 April 2016

Everyone comes out the other side

April 29 2016

We are settled into a routine that allows treatment Mondays and Thursdays before I leave for work which leaves Felix plenty of time to do his own thing before school. We are lucky he is an early riser (a common feature of autism) so we have no need to use an alarm clock on factor mornings. Felix is up and “patched” – our lingo for cream and dressings – well before 7am which means I can treat him by 8am to be out the door for work. The routine is working so well at the moment my other half as become superfluous as Felix takes it all in his stride.

It hasn’t always been this way. Look back at my early blogs and you’ll see we’ve had to battle through darker times. Every child finds treatment difficult at times. We’ve struggled with needlephobia for months following one bad experience and have yet to crack veins. This is the “next step” for Felix and we discuss it at every clinic visit. We tried for months unsuccessfully and eventually decided to shelve it for a while. His veins are brilliant now but he isn’t ready for the psychological journey. That’s the hidden side to haemophilia that friends and family don’t always understand – it has an emotional and psychological impact that often exceeds the physical. So you’re not in a great routine or wish haemophilia would just ‘do one’ and understand that other families have been there too and everyone comes out the other side.

Posted by: Honor Read Honor's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0007 April 2016

10th birthday trampolining is great fun!

April 27 2016

We all went out for Dan’s 10th birthday, we went to a trampoline place, and they seem to be the latest craze at the moment. There were lots of different activities to do there. Everyone had a good time and then all went for a meal after.

I know it’s not always advisable for children with haemophilia to do trampolining but this is something the boys have often done all through their lives. It wasn’t something that they had never done before and that could cause more risk, plus there are lots of other activities there as well. We felt it was safe enough for our boys to do. You get to know what they can and can’t do

Posted by: Tracy Read Tracy's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0007 April 2016

I never claimed to be Spock

April 22 2016

Aggghhhh! Felix wants to have a play date at his friend’s house. I knew this day would come. In fact, I knew it would come soon. We’ve already been hosting said friend at our home on several occasions since Felix started in Reception last September but the mere thought of it in reserve still has the ability to reduce me to an anxiety riddled mess. Clearly I am able to rationalise leaving him will not automatically result in a trauma related bleed, I send him to school every day without fuss. School for some reason, however, seems less dangerous. I know this isn’t logical, but hey, I never claimed to be Spock.

I think I’d be less anxious if his best mate hadn’t moved to the other side of the city. Most primary school children have friends that live within a few miles of them or even a short walk away not a 30min drive. If something did happen we’d be some distance away. The other issue is explaining haemophilia to other parents. How much detail do you give? It seems totally appropriate to go into infinitesimal detail about it to school, he spends 30hrs a week there, but that just seems like overkill for a 2hr play date once a month. In the end we settle on a brief “He has a bleeding disorder. It’s best if he visits on a treatment day – Monday or Thursday better for you?” and then waffle on a bit about “Please call me if he has a bang” and garble something about using a bag of peas for a cold compress when dropping him off.

2hrs later nothing has happened and he is back at home grinning from ear to ear. I feel like I’ve lost years off my life from worry but know now we’ve broken the barrier the next time will be way less stressful.

Posted by: Honor Read Honor's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0007 April 2016

College course to study carpentry

April 18 2016

Ben will be sitting his GCSEs this year, so we have been talking about what he wants to do. Ben likes carpentry so we are looking for him to go to college for a year and then get an apprenticeship with a company. We went and had a look at some colleges for him and spoke to the teachers about the courses. We have found a college we like and have applied for a course. So we are just waiting for them to come back to us for an interview. We all feel happy with what we have decided.

Posted by: Tracy Read Tracy's profile Parent Blog Parent Blog

UK-ROI/MG10/16-0007 April 2016

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