Rosie's big day

A glorious weekend of sunshine was the perfect accompaniment to Rosie's Christening – which took place on Sunday. Thankfully the sun didn't arrive the previous weekend as I'm sure if it had, team 'Running for Rosie' wouldn't have had quite the same success!

Sunday's Christening was such a great day and a perfect way to say thanks for all we have been blessed with since the arrival of Rosie – sure, we've had some extremely difficult times but we've also seen many more positives, as this blog hopefully manages to portray. 

On a personal level, Sunday gave me the opportunity to reflect on just how much Rosie has enriched my life as a Dad. As my only daughter we do share a bond like no other I've ever experienced – she still manages to make me well-up with her smile alone! There are also the emotional hurdles I've had to face (and will continue to face), sometimes I've managed admirably, sometimes not so...but all the same they're unique experiences that constantly teach me about myself, whilst making me that little bit stronger and more appreciative for what's really important in life.  

The Christening was conducted by Rev. Mike Walsh at Heald Green United Reformed Church. It was simply perfect and appealed to every one of our guests, some of whom do, and some of whom don't 'believe'. Rather than a more traditional address, we sat and listened (with tear filled eyes) as Mike read out a letter that he'd written especially to Rosie. I have included this in the pictures below so you can appreciate how heartfelt and personal it is.

Rosie's very fortunate after being showered with lots of very generous gifts – which Karen enjoyed opening (I would have too had I got a look in!). We'd like to thank each and every one of you who helped make her big day so perfect for the whole family. 

A special thank you to Rosie's Godparents, Keith, Tricia and Shiobhan (Shiobhan also made the amazing cake!). Also big thanks to everyone at Heald Green URC for making us feel so welcome and for keeping the children entertained with plenty of fun and activities.

Running for Rosie 10k

Just a quick post, as I wanted to share some photo's from today.

WOW! What an amazing time we've all had, team 'Running for Rosie' joined some 40,000 runners in the biggest ever Manchester 10K today. Those months of training put in by my wonderful Mum and Sister finally came to fruition – they'd hoped to achieve a time of 1hr 10 minutes... well they totally smashed it with an official time of 1hr 4 mins 15secs! A quite remarkable achievement, we even hear that Mum (65) finished 70th out of all women and men in her age group – not bad at all for a first time runner!

The support we received from the crowd all the way from start to finish was just brilliant and I'm still smiling thinking about it. I had a great 'Tom-ism' moment too when the first few times people shouted, 'go on Thomas' I was thinking, who are they and how do they know my name? It's only there in big letters on the race number – I hadn't even realised!

We would all like to give a special thank you to everyone who has helped support our cause through encouragement and of course generous donations to the Running for Rosie fundraising page, at the time of writing this, we, or rather you all, have raised a huge £2323.86 (excluding gift aid) which is fantastic. The page will stay open for a month or two before we split the money between the two charities. Thanks to you all for your continued support in helping raise positive awareness for Down's syndrome. I'll leave the post now with a few shots from the day!

Mum not quite getting the hang of the idea!

The Bending Bud

Well as I write, the BBC televised, 'Running For Rosie 10K' (okay, the Bupa Great Manchester Run) is only four days away! The epic training efforts of Mum and Erika will finally be rewarded on Sunday. They are really quite nervous about it, but I know they'll be absolutely fine and I'm really excited to share their euphoria when its done. I've been fearing a, 'bloke breakdown moment' when we all cross the line, such is my pride in what they are doing. Anyone who knows Erika will appreciate that running is probably the last thing she would ever suggest to do for charity, and, whilst my mum keeps fit through walking everywhere she is, at 65, taking up running for the first time since her school days. I've imagined the moment we all cross the line together over and over in my head and I'm more excited about this run than any previous runs I've done.

Rosie has played her part in all this too – quite apart from being the main inspiration for taking up the challenge in the first place, she has also been working on some limbering up exercises for us. This last couple of weeks she has been sitting up, then slowly (with her legs out in front) leaning forwards, so far forward that she is quite literally folded in two! It's remarkable just how bendy our Budlington is – a future gymnast in the making perhaps?

The pictures below show the stretching exercise I'm referring to and I'm sure you'll forgive the three of us for not even attempting it, or we'd definitely be calling the run off due to injury!

Rosie is off on her travels to London tomorrow to celebrate her cousin Olivia's first birthday but will be back on Sunday to cheer us on! So, as the house will be boys only for the next three days, I'm thinking indoor footy and pizza's may well be back on the agenda – get in!

There is still time to donate on the Running For Rosie page, however, as I've said all along, this run is as much about raising positive awareness for Down's syndrome as it is about fundraising for our chosen charities. I look forward to sharing a few pics from the run in the next post and shall sign off wishing my beautiful niece Olivia a very Happy first Birthday! x

Tiny dancer

I'm so pleased to be writing that things are finally getting back to some sort of normality, yes, Karen's back out with her friends tonight....again!

No sooner had I posted, 'In your own time eh love' before I had both my girls home from hospital. What a huge relief all-round – I can now stop boring friends on Facebook with constant 'Sats are too low' updates, and, from a logistical point of view its just great to settle down to the thing I sometimes catch myself moaning about – simple old 'day-to-day life'.

Each episode I've faced (and continue to face) since finding out Rosie has Down's syndrome helps me appreciate, more and more, the things that life gives so generously to me. I don't think I've ever been hugely materialistic, but equally, I would be lying if I didn't admit that I have, in the past, thought my shortfalls in life might be based upon material things like, cars, job title, etc. "should I have achieved this by now?" should I have that?"...in short, it's becoming more and more evident just how rich I really am with my family. Yes, yes, I can hear you all saying, "pass the bucket" but I'm being brutally honest (and I'm a tad ashamed) when I admit it's probably taken the arrival of Rosie and events taking me out of my 'comfort zone' to finally help me realise just how lucky I really am.

Anyway I digress! The change in Rosie since she's been out of hospital has been quite remarkable, most people pass comment on how her breathing sounds easier/better than ever, which in turn has given her another lease of life...in the form of dancing! You may think I'm jumping the gun as she can't crawl, let alone walk yet, but believe me, this little bud has rhythm! I've posted a video below to try and show you – I've left the sound off as the background noise is too irritating but she was dancing to Paul Simon's 'You can call me Al'.

I've also included a (albeit poor quality) video of the moment we surprised Harry and Joe with the arrival of Rosie and Mummy. As you'll see from Rosie's reaction she wasn't as pleased to be away from the doting nurses! 

Finally I must not forget to thank all the staff of the 'Starlight Childrens Ward' at Wythenshawe Hospital for their tireless efforts in helping our Budlington get back on track.

In your own time eh love!

Well I was really rather hoping to be writing my next post talking about how glad we are to be back to normal – unfortunately Rosie is still in hospital. It would appear after managing two days off the oxygen she has taken a step backward and gone back on it – before she is discharged she will need to complete a full night with no oxygen whilst keeping her saturation levels in the mid to high 90's. At the moment this still seems miles off but as with last time she was in we couldn't see the end then suddenly she perked up and we were home before we knew it. I have been struggling this week to get my head around the fact that Rosie was only in Alder Hey for eight days after undergoing seven hours of open heart surgery to fix her complete AVSD, even then, post surgery, she suffered a pneumothorax (collapsed lung) and yet she was only in for eight days. Why then has she spent 28 days and counting (total time so far of last three stays) in hospital with what by comparison to above, seems like a glorified cold!?

It's very easy to slip into the mindset of, 'give us a break, why us' and I'm honest enough to admit I have been guilty of that in my brief moments of weakness or, 'wobbles' as I like to call them, but in the main I, and we, as a family are determined to try and take the positives from each hurdle we are faced with. This is something (another thing rather) that I have found easier to accomplish since Rosie's birth. I am fully aware that there are millions of families far worse off, going through far more traumatic experiences than us and whilst I by no means take any comfort in that it does help me keep things in perspective when I have mini 'wobbles.'

Karen has been nothing short of amazing having done all but one of the nights in hospital so far and I can't express enough how proud I am of her titanic efforts to remain positive, she has seen very little of her boys (I include myself here!) and that in itself cannot be easy for her (I exclude myself again at this point as she has probably enjoyed the break from my daily annoying habits!). On a positive note Rosie is better in herself and in truth we aren't really worried as she seems happier now than we've ever seen her, she's been shouting at people, being nosey looking and laughing at everyone on the ward and generally amusing Karen, her visitors and the nurses, however, she just needs to get off this last smidgen of oxygen and we should be bringing back a stronger, more determined Budlington, ready to tackle the next developmental challenge whatever that may be.

I'm finishing this post by sharing a song that has helped give me that little lift when I've most needed it and its fast becoming a bit of a Bachofner family anthem!

Ben Howard – Keep your head up

Home from Home

Well it seems my mention of anxiety regarding Rosie's health in the previous post wasn't without substance. Unfortunately Rosie was admitted to the Starlight Ward at Wythenshawe Hospital on Monday. This is now her third visit since December and everything is too familiar, the nurses even remembered her by name! We thought she'd had her fair share when the last stay mean't spending her first Christmas in hospital, but it appears she still needs that little bit more help before shifting this bronchiolitis.

At present Rosie is requiring a lot of oxygen to keep her saturation levels where they should be naturally – in the high 90s. Thankfully the one thing she hasn't had to go through again is the trauma of having an intravenous line inserted – I don't think Karen or I could see her go through anymore needle prodding – they always find it difficult to find her veins so end up trying 4-5 times before eventually inserting it in her head, which as you can imagine is not pleasant for her. She is having antibiotics orally this time which she actually likes.

We have noticed (seeing her in the familiar cot) just how much has changed with her development since December – no longer is she happy to just lay there still, but is very active which is making it all the more frustrating for her. Rosie is now also on solids which in turn makes feeding quite interesting as she tries to wipe the nasal specs away!

Harry and Joe are being as good as ever with the situation but truth be told I'm finding this stint the hardest – to see them have to go through the unrest and change to their routine, sometimes having to sacrifice the things they love, to work around hospital visits, is difficult. They make very little fuss and it's easy to look at them and think, 'it's fine they are young, resilient and it won't have an affect.' All they see of Dad at the moment is my stressing to get them to school in the morning and rushing to get them in bed at night. As for seeing Mum and Rosie it's a case of as and when and actually only saw them tonight for the first time since Monday. They keep asking me if they can have a 'Boys night', (indoor football match, pizza's and a DVD) because last time I was on annual leave and they were on school holidays so getting to bed at a reasonable hour wasn't an issue, but I have to say no as its too late by the time I've visited the hospital and got them back home. I know, I know – yes, really they will be fine, yes we are lucky to have family on hand who are doing so much to help us keep disruption to a minimum, BUT equally, yes, they are only Nine and Six (just) and I do hope they really are okay. Wow I'm really waffling now I best stop!

I'll finish by wishing our Budlington a speedy recovery, Karen some long overdue sleep (amazing how she copes) and by thanking each and every one of our family and friends for their constant offers of help and support. Here are a few pics of her in her home from home...

Happy Clapper

Rosie has been a bit under the weather over the last two weeks, coughing a lot and struggling with a cold. It still tends to make us a bit anxious especially after the last two times (where we chose not to worry) ended up with long stints in hospital. I'm quite sure that anxiety will fade – its not like we panic as such but more a worry that sits in the back of the mind. I'm happy to say that she's alot better again and recovered just in time for our much needed Easter break with the London branch of the family (including a day trip to Essex visiting friends).

It's been a bit hectic since the last time I posted on here for one reason or another and the same can be said for Rosie as she seems to be achieving new things almost everyday. I'd say the most significant one to report is that she's now starting the early signs of clapping, the best kind for a parent really, where she has the correct motions with no sound!

Rosie also demonstrated a real show of improved grabbing strength this week when playing with her cousin Olivia who is two months younger. As you'll see in the video below Olivia picks up a crinkly square thingy which is also a favourite toy of Rosie's, her face lights up when she see's it and she swoops in and clings on for dear life before hiding it!

MY crinkly toy thing...no MINE from SwissBaldItalic on Vimeo.