Pride, super cuteness, laughter and cringe

No sooner am I writing to say there has been little to mention about Rosie's progress when she does so many new things in one week I don't know where to start!

The Bud has provided us with moments of pride, super cuteness, laughter and even cringe! I'm guessing Rosie won't be short of confidence when she's older if her antics at a recent family meal out are anything to go by. We sat and enjoyed our meals chatting to each other whilst Rosie babbled to her hands, however as the restaurant became busier Rosie increased the volume in her voice too but always that one notch higher than everyone else, by the end she had us in stitches shouting out at the top of her voice, making herself heard to anyone who would listen, which happened to be most of the restaurant – through no choice of their own. I've never (knowingly) been one to draw attention to myself so when most of the room were looking over, the moment of cringe swooped in (well, for me at least!)

Rosie's playtime favourite this week has been Row Row Row the Boat. It's one we've done with her for a while now but just this week she's started to put her arms out in a bid for more 'goes' on the boat, her face is a picture when we get to the crocodile moment as she anticipates the scream.

Rosie has finally cut her first tooth too. It's been promising to show its face for months and now it's finally made an appearance she won't let me look at it long enough to get a picture, you'll just have to take my word for it. I'm hoping the others will follow suit and grow through quicker now so she can begin learning to chew on foods but it still looks to be a while off.

There has also been an advancement on the cuddle mentioned in the previous post. We outstretch our arms and say 'cuddles' and she throws her head into your chest sometimes with arms around you too, sometimes it's just the head – either way it's absolutely adorable.

A rare event happened to us this weekend where our family temporarily dwindled back down to three. My sister took Harry and Joe away to her caravan which gave Karen and I Friday evening through to Sunday lunchtime with just Rosie to look after. We took this opportunity to travel and visit our dear friends Ric and Claire near Birmingham who are expecting their first baby in November. It was not only great to see them and catch up but also for Rosie to meet her future friend (albeit in bump form). I've included a video of this moment below which was captured by the bumps Daddy Ric, it's just wonderful – of course I would say that as it stars my beautiful baby girl, but I'd even go as far as to say it captures some of her cutest ever moments. Just shortly before we left again on Sunday morning Claire said, ''Rosie hasn't cried at all this weekend, are all babies this easy and chilled out?" It was lovely to hear that and I cast my mind back to when we first found out about Rosie having DS and my fears of how she might behave. I assumed she would cry all the time – I have no idea why I thought this but I did, another idiotic moment of ignorance I guess.

I should also mention quickly that The Futures Rosie is finally on Facebook, you can visit by clicking here and if you want the updates to appear in your newsfeed just click the main 'Like' button.

I'm signing off this post with a fitting lyric I heard this week from Elbow's Buffalo Ghosts:

"A Journey makes me taller, A journey brings me you".

Claws, Cuddles and New shoes!

I've been well and truly put to shame recently by Rosie – as my exercising efforts dwindle away to almost nothing the Bud has been working harder than ever on losing that 'holiday belly' by performing a cross between a pull up and sit up. She has developed the strength and ability to grip hold of my fingers and pull herself forward into an upright seated position. I think the motivation to do this comes from her seemingly endless desire to grab my cheeks and claw at my neck! (I even have the scars to prove it). She is playing of course so I really don't mind, in fact I'm probably guilty of encouraging it a little because it makes her smile and giggle so much and thats something I could listen to all day. She'll then round the whole thing off with a big cuddle and all is forgiven.

Rosie is waving a lot more now as well as copying our signing for 'hello', which is not only super-cute to watch but also shows continued advancement in her social skills.

The physiotherapist also paid us a visit this afternoon and delivered Rosie her first pair of shoes – I say shoe's but they look more like a pair of pink DM's! She is being encouraged to wear these in order to support and strengthen her ankles which are hypermobile. Hypermobility is the term used to describe joints which stretch further than normal and I'm led to believe it's very common in babies with Down's syndrome.

In other news this week I was extremely proud to discover that The Futures Rosie blog is featured in Hayley Goleniowska's first entry as SEN Editor for Brit Mums. It's not only a huge honour to be recognised by someone I have a lot of respect for but it's also helped take my message to a wider audience which is great. You can read the entry by clicking here and I'd also recommend a visit to Hayley's blog Downs Side Up to see why she and her daughter Natty are such an inspiration to many.

I've included a couple of pictures below from our recent holiday in Scotland where Rosie was doted upon by everyone from Great Aunts & Uncles through to my nieces Hollie and Martha who have been like live-in Nannies for two weeks! I must give them both a big 'thank you' as they never tired of feeding her, changing nappies, entertaining, bedtime bottle feeding and giving her copious amounts of love. We now know where to head whenever we fancy a break!

Things I've taught my Daddy

It's been a very hectic few weeks, even months and I cannot remember the last time I enjoyed a moment of peace like I am right now. The kids, alongside their Mum, uncle, aunty, grandparents and cousins have all gone for a walk and I'm sat here by the river soaking up the tranquility. It's as if I've just taken all my stresses and worries of everyday life and chucked them in and watched the river carry them off downstream. A perfect moment and a great opportunity to write a few words.

There hasn't actually been a great deal for me to write about Rosie's progress this past week other than the fact she's babbling more than ever which is just wonderful to listen to – so entertaining, I wish I could bottle it up and save it for rainy days, I've captured a bit of it on video which will have to do! I've also been busy concentrating on a couple of ideas I've had in a bid to help eliminate common mis-conceptions often associated with DS, a little series of photos/posters I'm calling, 'Things I've taught my Daddy'.

It's always been important to me since I started The Future's Rosie that I don't come across as 'preaching from a moral high ground'. The reason I wanted to write in the first place (apart from getting things off my chest) was to help inform others what life is really like raising a child with Down's syndrome (DS). The drive to inform didn't come from other people's mis-conceptions but rather from my own ill informed pre-conceived ideas and total lack of knowledge. I was shockingly ignorant to many things relating to DS. It all seems so obvious now.

I don't expect the world to just change their perceptions overnight simply because I now have a child with DS, BUT I can hopefully play my part (no matter how small), through The Future's Rosie etc to help shift the way one or two people think and who knows, maybe someone reading this blog might one day find themselves facing a similar situation and feel better equipped to deal with it. I'm sure, upon reflection, when we were first told Rosie had DS had I been more aware and focussed on what it is rather than what it isn't – what I'd gain rather than what I thought I'd lost then my initial shock and fear would have been far less great.

So in a bid to do a bit more away from the blog to raise positive awareness I've put together a couple of visuals which I hope can gently inform people without patronising them. There are many thoughts associated with Down's syndrome that are in fact 'myths'. I've included the images/posters below and would be delighted should you wish to grab them and download for sharing around social media sites or blogs etc.

Thank you to everyone for your continued support. x

It's a rollover!

Wow that last post is a tough act to follow. I'm certainly feeling the pressure writing this one!

I have been asked before if I deliberately just put happy pictures of Rosie on here, but the truth is she is always smiling, such a happy baby – it's not hard to catch a smile with her – that's how we can tell when she's unwell…she no longer smiles. Unfortunately that happened a few days ago and the anxiety crept back in as she began coughing again, keeping us up the majority of the night. I'm happy to report that it appears to have been just a short spell of common cold and thankfully not a return to her bronchiolitis. She is definitely back on top form now.

We have enjoyed a great weekend with our friends and took a stroll to Styal Mill (bit of a family favourite) where we had a picnic – outside and everything! Rosie enjoyed playing in the long grass and examining buttercups, well picking them off and tossing them away.

The sunshine has not only given us the chance of enjoying the outdoors again but also helped Rosie discover new things, like shadows, trying to catch and pick them up. She is doing a lot with her hands now and finds them of great interest – she has even began talking and shouting at them which I'm guessing is some kind of step in the right direction to something or other?! Either way it's very cute and funny!

The big achievement this week for Rosie has been her rolling over and pushing up onto her hands, again a sure sign the physio tips are working and well worth persevering with. We encourage her by rolling ourselves first, then she copies, finding the whole thing really entertaining – at one point she even rolled over to her front and shuffled back a short distance. This is great as it shows early signs of discovering the ability to move from one place to another by herself.

I also had an interesting chat with Joe (6) this weekend. It's all too easy to forget how young he is and assume he 'gets' stuff, but when he comes out with questions such as, "Did I have Down's syndrome when I was a baby Dad?" and "Will Rosie have Down's syndrome when she's older?" it really hits home where he is at with understanding it all. I will be making a conscious effort to find resources that help inform young siblings about DS because to be truthful my knowledge is still very limited and I don't feel I can explain things that well, certainly not to a six year old – anyone reading this with good ideas please fire them over so I am better prepared when he wants to talk about it and ask questions in the future!

Rosie and Me

By Harry, Aged 9

Today I'm going to write a blogpost (Harry, Rosie's biggest brother). I'm writing about my relationship with Rosie. I can't lie ,I get the most smiles! If she's happy I ALWAYS  get cute smiles or even laughs to entertain me and others! Weirdly even though I sing terribly, when I sing the two Tom Petty tunes, Won't back down and Free falling, that calm her down she settles down. Rosie having Downs Syndrome doesn't bother me that much, only when she's in hospital. I actually find it cool that she's different to everyone else in our family.

I know this sounds weird because she's only our baby Bud but out of our house and maybe even our whole family, I think she's the the bravest having to go through her operation at Alder Hey. Finally, I've been feeding Rosie lately and it's not easy, I'm telling you. One moment she's clean and the next she's got weetabix all over her bib, cloths and face! Feeding her her milk is easier but the last time I fed her she kept on trumping( on me!)

Our Bud will always be cute!!!!!!!!!!!

Hazza writing a rough copy of the blog

Typing it up for the blog

The Rainmaker

I must apologise on behalf of the Bud for all the rain we've been seeing of late. It may have something to do with her recent enjoyment of a rainmaker toy! She has learned to pick it up using both hands and the new found strength in her arms allows her to shake it around a bit too. Every time she hears the little plastic balls rattle down the tube she looks as amazed and surprised as the first time she heard them. 

It's great to see Rosie's hard work and efforts from the shoulder strengthening exercises benefit her in other areas that are of more interest for her – being able to lift heavier objects is taking her play experiences to the next level as she can now interact more with her toys.

Whilst our Budlington is quite slow developing her muscle strength, when I watch her play there is a real determination in those eyes and I just love seeing her achieve new things. I'm confident her persistence and resolve will eventually see her overcome the slower muscle development and achieve personal goals quicker and quicker as she grows.

Rosie's general shouting noises are transforming each day into more of a babbling sound which I'm guessing is a positive sign towards trying to say actual words. She still says, "Dada" a lot but if I'm being honest I'm not 100% convinced it means Daddy just yet.

I've also been keen recently to try and capture how well Rosie's heart surgery scar has healed so I can add a positive 'post surgery' image to the 'Rosie's Surgery' section. Whilst I didn't quite get the picture I wanted for that page, my efforts didn't go without reward, as I've gained some great shots of Rosie's funny faces and smiles to add to the ever growing collection of cute photos!

Stone Rosies

I've titled this post, 'Stone Rosies' for no other reason than being a huge fan of the Stone Roses and on Friday I fulfilled a lifelong dream to see them play live – I simply couldn't resist the chance to shoehorn in a reference somehow! ...Is that a tumbleweed I see?

Anyway back to the blog...

Saturday finally saw the curtain come down on this years Running for Rosie 10K fundraiser challenge and I'm overwhelmed to announce that we (you all) raised the incredible sum of £4113.61 – to be split evenly between the Down's Syndrome Association and RMHC Alder Hey. It's such a huge amount that will make a genuine difference to peoples lives. I can't thank you all enough, not just those that donated financially but also to those that helped raise its profile simply by talking about it to friends/family and sharing it about via social networking etc.

It's funny really to think that all them months ago before our Budlington was even born, I had genuine feelings of anxiety raised by an email (written with all good intention) which suggested in some cases having a baby with DS may result in some friends suddenly not visiting anymore. The generosity and heartfelt words of support shown throughout Running for Rosie has well and truely put that fear to bed. I think the generosity (visualised by the amount raised) proves just how much Rosie has already touched peoples lives in a positive way – this really offers me so much comfort when I catch myself thinking about what her future may hold.

The Bud's been working hard on her exercises recently and managed a full three minutes in the crawling position the other day before the strength in her arms gave way. A week ago she was only managing maybe 30 seconds (at the most) so the extra help and encouragement is definitely paying off. We're under no illusion, we know it will be a while yet before she is crawling, but she's certainly heading in the right direction.

We did discover this weekend that she doesn't appear to like chocolate, although the picture below doesn't suggest this as she's full of smiles! She was happier to have the chocolate all over her face than in her mouth – This is almost beyond me, I just can't fathom how any child of mine could possibly not like chocolate!