Jimbo on babysitting duty

I left Jim to his own devices for the weekend and went off to London for a girly weekend with Kate and Dee. He managed to have lots of fun without me:-( Tried out Dawn and Craigs Taga bike which looked like lots of fun and took Em out for coffee. She came through the weekend unscathed other than slightly sunburnt legs - naughty daddy forgot to put cream on them. Feeding is coming along she will now hold the spoon or fork herself and eat off it as long as its loaded for her. Maybe we will have it conquered by the time number two arrives!

New Forest

Had a fab weekend with the girls while the boys camped in the new forest. Thankfully the best weekends weather so far in the last month or so. We visited them daily with supplies but definately chose the more sensible option. Ollie loved his first ever camping experience and maybe next time we may join them, but then again maybe not.

Feeding Joy

This month has so far been all about food. My quest to get Emily feeding herself with a spoon and Emilys determination not to make life that easy! We are starting to get somewhere after a good couple of weeks of spoon throwing, making more mess than i thought possible and grumpiness. We also bought a new easy clean highchair to calm my nerves. Emily will pretend to feed with a spoon but wo betide if i try and help or load a spoon of food for her. After persevering, she is just starting to at least try and get some food on the spoon herself and seems to take a fork being loaded a bit better than a spoon. Anyway we will keep the blog updated with progress.

Having a swinging time!

Emily's Granny M wanted some more video clips so here they are:

Visit to the Jacksons

Em and I went to Purley to see Auntie Gem, Uncle Tye and the cousins we had a fab time had a lovely day at Godstone Farm.

More screening and cant believe my baby is growing up

Ems first birthday brought the joys of a thyroid function test and visit to the opthalmologist (eye man) no problems indicated at either, so another sigh of relief. Em graduated to the toddler room at nursery which i found hard, she was the only non mobile kiddy there and new nursery staff to get used to. Within two weeks in typical Em style she started crawling and has two brand new sparkling teeth is louder than ever and learning lots of new tricks including ball throwing and shelf emptying.

1st Birthday

We travelled up north for the twins christening and celebrated Ems birthday with granny and grandpa Maltby. Em was totally spoilt as ever got lots of lovely pressies and had a fab weekend.

Spain June 09

We have just got back from a fabulous holiday in Spain for aunty Hansys wedding, Emily loved being the centre of attention and looked very cute and was a very well behaved bridesmaid. She adored the pool and got to spend lots of time with her cousins Oliver and Lilly. She perfected some rather loud vocal tricks including a hiawatha cry which was very popular at 3am.

Isn't she cute

Emily is now 11 months old - which we can't believe and her first birthday is zooming towards us, recent achievements include learning to sit up from her tummy using a rather acrobat splits manoevre - which means she now only ever wants to sit up. She is a little lazy so we don't know when crawling will happen but knowing her it will when we least expect it! She also drank all of her morning milk from a cup today for the first time - v exciting!

New addition to family

We are making a mad leap into the uncharted territory of two little ones. New addition is expected to make an appearance in early November, is not kicking as yet but i am beginning to expand. We had a nuchal scan and blood test at 11 weeks which suggested the baby had a low risk of a chromosomal abnormality and have decided not to have any invasive testing. Emily has no idea what is coming, and we are rather worried we won't have such a perfect little angel as we had last time and won't know what has hit us!

Ray of sunshine

Emily has been reflective of the recent good weather and been even more of a little ray of sunshine than normal. She is begining to be able explore the world around her more - find novel and obscure ways to reach objects and toys. The pictures are of her at home and at the John McNeill Centre in one of the great opportunities groups they run with Portage (home play therapists).

My first time on a swing

On Monday Daddy took me to the doctors to fix my yukky eyes. We met Dawn and my friend Henry in town and went to the swings. I loved the swings almost as much as my Daddy!!!

Mothers Day

My first Mothers Day was without Mummy and spent with Daddy and my Granny and Grandad (Maltby) - more than adequate replacements for Mummy! We went for a walk and spent the day enjoying the sunshine - having lunch outside. Granny and Grandad kept me amused, so I performed for them - smiles and clapping (my newly aquired skill).

First trip to Spain

I made a brave dash across to Spain unaccompanied with the little one at the beginning of March, we had a fab time for two days until illness struck and two visits to the doctor, two days of extra holiday due to inability to fly and one course of antibiotics later we got back, me exhausted Emily looking right as rain and ready to go....

Wilfull and grumpy

The last few weeks have shown a different side of our sunny little munchkin, a refusal to drink anything making our lives a torment. A familiar pursed lip expression showing a determination that unfortunately she has probably inherited from me. We are now experts at how much formula you can get into weetabix and just about any foodstuff. Things seem to be looking up now and we are back to at least some bottle so hoping it was just some teething grumpiness and not the start of joyous behavioural nightmare...

Meeting the twins

Emily met the new additions to the Maltby family this weekend: "the Twins" Lilly and Evy. They are adorable and both the twins and their parents are doing very well. [Picture 1 (left to right): Lilly, Emily and Evy].

Hearing all clear - yippee!

Audiology review this morning was all clear, Em tested normal in the distraction test, lady making silly noises to distract her from toys, and also had no congestion in either ear apparently unusual for a kiddy with DS. So all smiles for Mummy today. She gets reviewed again in 12 months.

All smiles

Feb seems to be the month of smiles so far, Emily here with the girls. Glad January ended after a week of catastrophies ending with flat tyres on the A3 and nasty nursery closing for the day unannounced and Lia saving the day by looking after Emily.

What is Down Syndrome and how does this affect Emily?

First of all Down Syndrome is not an illness or a disease, people do not suffer with Down Syndrome. It is a common (~1:600 babies) genetic variation whereby the individual has an extra chromosome 21, this extra chromosome is in every cell of their body. The extra chromosome is like having too much of a good thing, it confuses certain areas of development that are coded for in chromosome 21. Every person with Down Syndrome will be affected differently by their extra chromosome, it means they are more likely than other people to have certain features and medical conditions but like all people no one individual will have the same combination of these. Children with Down Syndrome will be more like their siblings and family than like another person with Down Syndrome!

So how does this affect Emily?

She has a small congenital heart defect which is fairly common in the general population - up to 25% of people may have it and not know. She may have to have an operation if it does not resolve on its own as it may cause problems in middle age but at the moment it doesn't seem to be affecting her. She will have more scans when she is about one which will tell us more.

People with Down Syndrome often have bad eyesight and some hearing loss but so far Emily has tested normally at all of her checks so we are keeping our fingers crossed.

She has slightly curved little fingers and has low muscle tone which means she has to work harder than the average child to do things like sitting up and rolling over because she has to work harder to maintain a muscle contraction.

The bridge of her nose is a bit flatter than most peoples which may mean she has small airways and she may catch lots of colds but so far it doesn't seem to be a problem and she has been v healthy.

Everything else we will just have to wait and see, like any other child she will learn to walk and run and ride a bike etc. but it may or may not take a little or possibly a lot longer than most. People with Down Syndrome tend to have a profile of strengths and weaknesses rather than global delayed development her strengths are likely to be reading, visual awareness and people skills and her weaknesses maths and auditory memory. It is likely that her IQ will be below normal and people with Down Syndrome often struggle to develop clear speech so the speech therapist is likely to be our best friend that is if I don't become one ....

January 09 food and play!

Emily with her two cousins

Emily with her beautiful Auntie Hannah, Lilly and Oliver at xmas.

Our little monkey can sit up

Very proud parents as not only has Emily learnt to sit up over christmas but she has also discovered food, having anticipated and warned nursery of all the impending problems of solids it seems the only thing that Emily is concerned with is how quickly you can get it in!

The Dad's perspective on a new baby with Down Syndrome

The most underrated a key person in the family - did I leave out modest too?


I coped early on by denial and throwing myself into waiting hand and foot on my wife and child completely. It took a while to come to terms with a situation I wasn't expecting. As well as navigating all the other novalties this time presents: boobies projecting fine jets of milk across the bathroom, breast pumps, nappy admin, and mother-in-laws!!!


I quickly realised that I had an infinite need and desire to protect and nurture this weeing and poohing machine that we'd just produced. Nobody could take away from us our little daughter who we wanted the best for. Emily will never fully comprehend how different she will be from what we expected her to be and it's for us (as parents) to come to terms with. Realising that fundamentally Emily is a little girl like any other - who just has a reduced capacity to achieve what society deem to be success - has been the most important step for me. I now forget (happily) she has DS and concentrate on extracting as many giggles from her as possible.

(put much more eloquently here: http://www.timesonline.co.uk/tol/life_and_style/article633433.ece)

I joke now that I was more disappointed that Emily was a girl than the fact she had DS, and took consolation from the fact that at least she wasn't Ginger! (no offence to all you GWAs intended - if that's still possible?).

She is has rapidly become an avid rugby supporter. Showing some insightful analysis during England's Autumn Internationals: falling asleep and crying! She can frequently be seen sporting her Sale Shark bibs (thanks to Squaddy - a Leicester supporter!) but has sadly now outgrown her England baby grow.

Down to earth with a bump

When we arrived at hospital our first blissful hour and a half with Emily came to a rather sudden end after her examination by the paediatrician. The midwife had mentioned a concern about the orientation of her eyes but the paediatrican seemed far more concerned about her heart. After some beating around the bush eventually a registrar explained to us that Emily was very likely to have Down Syndrome and one of the complications of this could include severe heart defects. So from blissful joy to a one

hour echocardiagram and ECG with a six hour old baby lots of tears and lots of hugs and all the while Emily was with us and we thankfully both knew that we had fallen for her hook line and sinker.

The following two days were pretty dire waiting for confirmation of the inevitable and also being faced with a seemingly endless list of problems Emily could have and a host of medical professionals that seemed to want to do nothing other than find one. I couldn't wait to get home (that is the biggest understatement ever) and Jim was my rock and sat with me most of the two long nights i was in while we listen to Embles gurgle and squeak watch her latch onto feed beautifully and then watched her eyes close as she drifted off to sleep.