Wednesday 25 July 2012

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!

Thursday 19 July 2012

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

Sunday 8 July 2012

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!

Monday 2 July 2012

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!