We've had a "little" baby

Hope for the Houston's

2009-10-13T20:31:00.002+01:00

Many of you will know some good friends of ours, Candi and Skeet. They lost their little girl, Avery, two years ago today. Please remember them in your prayers at this hard time.

They have had a number of unsuccessful IVF treatments and are now at the stage where they can't afford any more. Candi's sister has set up a website to give them one last go by raising the money they need. It's been up for a while and I've been meaning to link it here so please go to the Hope for the Houston's site to take a look and donate if you feel able. You can do it by a number of different payment methods including Paypal so it couldn't be easier. Every little bit counts so please give whatever you can.

Theo's second birthday

2009-10-10T21:53:00.006+01:00

First of all, sorry it's been such a while since I last posted. It's been a hectic few months but I know that's no excuse!

Today, Clare and I remembered our son Theo. As has become tradition, we went to Southwold and said some prayers for him at the end of the pier. We also released two balloons. The sunset was beautiful again and we really had a strong sense of God's presence with us.

The whole day is probably best described in pictures...

A huge thank you to everyone who was sent us cards, emails, texts and so on. It makes such a difference knowing that people are thinking of us!

Opening Night!

2009-07-08T17:33:00.007+01:00

Clare's production of Thoroughly Modern Millie opened last night.

The theatre was packed and the audience was not disappointed with two hours of fun, laughter, dancing and singing! The cast was very strong but Clare shone as the leading lady. Of course, I'm very bias so here's what the East Anglian Daily Times said...

"A strong cast of principals was led by Clare Dungey who was a thoroughly marvellous Millie, especially at full throttle in the showstopper number Gimme Gimme."

The full article can be found here.

You can also check out pictures of the show here.

No real news!

2009-06-19T17:42:00.003+01:00

...but I thought I'd post anyway to let people know we're both still alive! Clare and I have been getting into this Facebook thing so we may never re-emerge into the real world!

So no real news from us...Clare is rehearsing hard for her show which is in a few weeks time! Hopefully I might be able to post some pictures soon.

My only real excitement over the last month or so is going to a Third Day concert in London. They're an Christian band from America and pretty rockin'. Definitely check them out if you have a chance.

Well, I'll try to be back soon with something interesting to say!

Weekend in London

2009-05-04T19:00:00.009+01:00

Clare and I have just got back from a lovely weekend in London celebrating Clare's birthday. It was a star-studded holiday because after seeing Oliver, we waited at the stage door and met up with Jodie Prenger, winner of the TV talent competition "I'd do anything"!

Then we just happened to bump into Mr Bean himself... Rowan Atkinson!

On the Saturday, we decided to go to the Victoria and Albert museum, pictured below.

This was the view when you looked up from eating your sandwiches in the cafeteria. There was even a concert pianist playing in the background which, considering the price of the food, was the least they could do!

Of course, we checked out the performing arts exhibition and couldn't resist trying on a few costumes...

I personally can't see the difference with this one though!

We also checked out the National History museum, saw some dinosaurs and had a minor altercation with a pushy Italian couple! Don't worry though...no-one was hurt, although they did leave the exhibition (and I suspect the museum) rather quickly!

Determined to prove that we were still rebels at the age of 30, we drank in the middle of Leicester Square.... shame it was only Pink Lemonade!

And finally, Clare decided it was all too much for her and had a quick snooze before going home!

Well, that's some of our holiday snaps! Hope you enjoyed them!

The Big Three-O

2009-04-30T20:01:00.003+01:00

Youthful though she may look, Clare turned 30 on Tuesday! She was initially daunted by the prospect of entering her 4th decade but a series of surprise parties thrown by her school pupils and staff brightened her day considerably.

To celebrate, we're off to the big smoke (London) for the Bank Holiday weekend. Knowing that Clare is a musical lover, I have booked tickets for Wicked and Oliver which should be very good by all accounts. I will try and remember to take some photos and post them when we return!

Rescue at Warwick Castle

2009-04-24T18:31:00.006+01:00

Well, I'm long overdue a blog entry so here's a little tale from our recent holiday. We went to Warwickshire for a week staying at a beautiful Mill Cottage in Braunston. We spent the time unwinding after Clare's stressful school inspection and using our National Trust Membership to visit lots of lovely old houses in the area.

We spent one of the days out visiting Warwick Castle, which is one of Britain's most complete castles. It was built in 1068 by William the Conquerer and has loads to do there including knights fighting and a scary dungeon.

Whilst we were there, we noticed a fire engine and ambulance had arrived in the Courtyard. We later found out that a man had suffered a heart attack climbing the very steep spiral staircase in one of the turrets (Don't panic though....I understand he's ok now!). The Firefighters couldn't quite work out how to get him down safely from the turret so eventually an RAF rescue helicoptor airlifted him off the top of the turret.

Despite a huge amount of wind and dust blown down by the helicoptor's rotor blades, I managed to capture the rescue on video. It's two minutes long but about halfway through you can see someone being winched up. Towards the end, I pan around so you can get a good view of the castle as well.

What excitment and they didn't charge us any extra!

Theo's Song

2009-03-29T21:57:00.002+01:00

The song I've written in memory of Theo has been finished for a while now but I've only recently got round to uploading it. It's called "The Gift" and can be found here. It's instrumental so there's no lyrics but hopefully the sentiment is clear.

On the same web page is another tune I wrote called "Big Brother" which is slightly more hectic than The Gift but more in line with the kind of music I generally listen to. Please don't feel you have to persevere with this one if it disagrees with your eardrums!

I would appreciate any comments people have both stylistically and in terms of production quality. I'm after constructive stuff so please let me know what you really think!

If you have any problems with playback, let me know.

Life is like a box of chocolates!

2009-03-02T19:15:00.005Z

I am notoriously difficult to buy presents for. Any CD, DVD, or guitar someone might have thought to buy me will undoubtedly have already crossed my mind and been immediately purchased. This makes Christmas a stressful time for my loved ones!

My top wannabe career (after lead rock guitarist!) has for a long time been "Master Chocolatier". This choice was inspired by the Lindt chocolate advert. I love Lindt chocolate and have long desired to be the fat man with the white hat who scoops up melted chocolate on the end of a giant whisk!

This led Clare to an inspired choice for my Christmas present. A 6 month subscription to the Hotel Chocolat tasting club!! The proof of the pudding is shown below!

Every month I get delivered a box of 36 chocolates that have been hand-made and selected for people in this exclusive club. The box comes complete with its own menu, so you know exactly what each chocolate is and... this is the best bit... you rate each of the chocolates out of 10 and send your answers back. The first step to developing a chocolate palette and becoming a master chocolatier!

A few select people make suggestions for new chocolates that the tasting club could produce and, if these are good enough, they not only make them but also put your name next to the master chocolatier in the chocolate menu.

So this is my next aim...to come up with a chocolate good enough to get selected and produced. Recent examples include Whisky and Sour Cherry and Eton Mess so my choice will have to be pretty special. At the minute, I'm thinking something involving peanuts!

So if you have any inspired thoughts, let me know and I will suggest them too! (Taking all the credit naturally!)

Tonya's Moved!

2009-02-24T22:34:00.004Z

For everyone who follows Tonya's blog, it can now be found here. Please update your links!

Remembering Friends!

2009-02-19T21:00:00.005Z

At some point every year in December/January, we have the "calendar saga". This is not as long and drawn out as the "diary saga" (a story for another day!), but is nevertheless quite arduous. The problem arises because Clare is looking for the "calendar of her dreams" and unsurprisingly 99.9% of shops do not stock this.

Unfortunately, her criteria for a calendar are quite specific in terms of size, layout, content, pictures and so on. This coupled with the fact that she will automatically ignore the first 758 calendars she sees (or the calendars in the first 98 shops she goes into...which ever comes first) tests my normally patient attitude to its full.

Luckily this year, having casually rejected a number of perfectly decent candidates, Clare stumbled upon a brilliant idea....we would make our own! Andy had an initial stab at producing something mediocre in Publisher before deferring to Photobox for a more professional finish.

All we needed now were some photos and it turns out our little America trip produced more than enough suitable ones.

So February is devoted to some of our good friends who we got to know even better whilst in Monroe. Here's the finished article!

(working left to right we have: Tonya and Knoah greeting us upon our arrival; Clare and I with Jennifer, Cat and Owen; and the best of all...Knoah demonstrating "monster baby!")

An excellent way to remember all our good friends and the amazing time we had with them!

Clare's a star!

2009-02-07T10:06:00.005Z

...well, in the making...

But first, apologies for taking so long to return to the blog world. It's because of excuse* and also because I've been very busy with excuse* and excuse*.

Anyway, last night Clare auditioned for an amateur production of a show called "Thoroughly Modern Millie" and has got the leading role of Millie! The show started life as a frankly horrendous film (in my opinion) starring Julie Andrews but has been recently converted to a much more professional stage version. She will be performing at the New Wolsey Theatre during the first week of July. I'm not sure that they have satellite link-up facilities at the Wolsey but if friends want to come and stay with us so that they can see the show, you are most welcome.

People further afield may not realise Clare's rich stage heritage but this picture is of her playing Sally in "Me and my girl" in 2006.

She got quite a good write up which you can read here. Also you can check out more pictures of her on Appeal Theatre Group's website.

Anyway I'm very proud of her and looking forward to becoming a theatre widower again! It sounds harsh but it means I get to play loads more loud guitar when she's out!

Ok, that's our news done but I promise that I will try and come back more regularly from now on!

* Insert your favourite explanations for why you've not done something when the reality is you're just lazy!

Happy Christmas!

2008-12-25T13:24:00.003Z

Clare and Andy wish everyone who reads our blog a very Happy Christmas and a peaceful New Year!

I Left My Heart In San Francisco.....

2008-12-08T20:32:00.009Z

Well it's (finally!) time for the last episode of our America journey, only about 4 months after we got back! Our final destination was San Francisco. We only had a few days before we had to return home but, as ever, we endeavoured to pack as much in as we could!

We started off at Pier 39 were there was lots of exciting shops and restaurants, not to mention the odd one or two hundred seals. You can hear them long before you see them and they just spend their day lounging round the place, making a racket! Quite a sight to behold!

From the next pier along, we got the ferry for our night tour of Alcatraz Prison. This was amazing and really quite scary once it had got dark! We were supplied with a very informative audio tour which told us all about Al Capone, the Birdman and the only three people ever to escape from the Rock. Slightly disturbing was the fact that we were on the last boat off the Island at about 10pm, but nobody seemed to be counting people on and off! I thought it might be fun to rough it overnight but Clare had other ideas!

We couldn't leave San Francisco without checking out some of the famous hills. We'd heard they were steep but we hadn't realised the half of it! But there was 3 weeks of American food to burn off and we felt we needed the exercise so we gave it everything we had!

When we reached the top of the mountain...sorry! hill... by a complete stroke of luck we managed to bump into the old tram service that took us all the way back down again and into town. When they told us they had two spaces left, we thought we were in luck... We didn't realise that those two spaces were hanging on for dear life on the outside of the train.

I think a fitting end to the holiday is to leave you with two video clips of the experience!

All the pictures, and some more crazy videos, can be found here.

Well, thanks for sticking through this rather protracted account of our holiday! I guess I'll have to think of something else exciting for next time.

California Dreaming.....

2008-12-01T22:49:00.001Z

After quite a few weeks off, I thought it was about time to continue the epic saga of our America holiday. After Las Vegas, we flew to L.A and were met at the airport by Clare's friend, Elise. About a year before we were married, Clare spent 6 months in India with the organisation Oasis helping in the slums of Mumbai and at a centre for women and children with HIV. Elise was on the team with Clare (along with Hazel) and is from L.A. She very kindly took the day out to show us around and had planned a lovely itinerary that took in Manhattan Beach, Venice Beach and Santa Monica. We had a lovely day with her and it was great to catch up.

L.A. is unlike all of the other places we visited. Everywhere else, we were able to catch a bus or subway and could navigate without being reliant on taxis or cars. In L.A., everything is so much more spread out so we decided to do one of the many Hollywood tours that run. This took in the Hollywood sign, Beverly Hills, the Star Walk of Fame and my favourite, the Rock Walk where I almost touched hands with Jimmy Page!

We also had a two day pass for Universal Studios. Here we had a guided tour of many of the movie lots and went on some amazing rides, including the Mummy Returns, Jurassic Park and The Simpsons Ride.

If you want to see more photos of our time in L.A. see here.

Well, we're almost at the end of our holiday. One last stop... San Francisco!

Mumbai Terrorist Attacks

2008-11-27T09:06:00.002Z

Please remember and uphold in prayer all those affected by the terrorist attacks in Mumbai. Clare still knows a lot of people there from when she worked for Oasis in Mumbai a few years ago. So far, no-one we know has been hurt but many people are still being held hostage in the Taj Mahal and Oberoi hotels. Please pray for a peaceful and swift resolution to that situation and for all those who have lost loved ones or been injured by this attack.

Jen's Beautiful Little Girl

2008-11-21T19:42:00.005Z

Jen emailed Clare a picture of Elisabeth. She is so very cute that we thought it would be a lovely idea to post it on the blog. Jen calls Elisabeth "her peanut" and I think you'll agree that she is beautiful!

They've put together a wonderful slide show of pictures set to music and you can find it here.

Please continue to remember Jen and her husband in your prayers as they work through this difficult time.

Elisabeth Ann Matteson

2008-11-06T09:00:00.003Z

Please pray for Jen and her husband who lost their daughter, Elisabeth Ann over the last weekend.

Jen contacted Clare a few months ago after the doctors picked up a skeletal displaysia at her 21-week scan. Later scans showed that that the condition was most likely lethal (Campomelic Dysplasia) and she experienced increased fluid levels at 28 weeks. A week later, she went into labour and tragically Elisabeth was only with them for 6 minutes. She was small - 2lbs 9 oz - but very precious to them and in Jennifer's words was "adorable".

Jen seems very strong in her emails but both Clare and I know how hard such times can be. They need love, support and prayer so please uphold them in your thoughts during this difficult time.

I don't think she has a blog but I know that she reads ours so please feel free to post any messages here.

Please also remember Tonya and Knoah as he undergoes MRI and CT scans and pray that the doctors would be wise and reassuring.

Theo's Birthday

2008-10-24T09:29:00.008+01:00

Clare and I are both at home today with a cold but at least it gives me a chance to catch up on blog-world and post about Theo's birthday.

We both took the day off and we went to stay in Oulton Broad about 50 minutes away from Ipswich. We started the day at Thrigby Hall which is a small wildlife park. It's more open than a normal zoo and lots of the animals are not in cages as such. For example, you are only separated from the tigers by a double layer of wire mesh. It's big enough to stick you fingers through but luckily the gap between the two layers is large enough so that you can't actually poke the tiger! It still lets you get pretty close though!

We also saw Red Pandas (my favourite!) and dropped leaves on a crocodile's head to see if it was still alive. I wanted to drop my bottle of water on its head but Clare said no!

In the evening, we went to Southwold Pier (where we scattered Theo's ashes last year). It was a beautifully clear, moon-lit night. We let some balloons go from the end of the pier and said some prayers.

The next day, we got both families together and went out for a Chinese meal to celebrate Theo's birthday. It was a really great day and it was nice to have both families there. Typically, I forgot the camera so no pics of that I'm afraid!

Overall, it was a lovely weekend! Although there had been some sadness in the run up to Theo's birthday, the actuall day was very happy and it was good for Clare and I to get some time away by ourselves.

Anyway, in my slackness, it seems that there are still two more holiday locations I've yet to blog about. So come back soon to hear what we got up to in L.A.

One year on...remembering Theo

2008-10-10T08:59:00.002+01:00

It seems like a cliche, but it really doesn't feel like a whole year has passed! On this day last year, we welcomed and said goodbye to our son Theodore. Over the last year, we've been through times of happiness and times of great sorrow.

Theo was only with us for a short while. Some people spend their whole life looking for their purpose in life...searching for the one thing that will make an impact and cause their name to be remembered always. Theo managed to achieve this in just 4 and a half hours. That was all the time God required of him here before his work was done. Although Clare and I don't fully understand why his time was so short, we know God's will was done because we see it in the effect Theo's life has had on other people as well as ourselves.

We are certainly changed by all this. In some ways we are older, wearier and more battle-worn. But in others we are stronger, firmer in our faith and more trusting in God. The good surely out-weighs the bad.

As Clare and I look back over the past, we also look to the future. We don't know what's around the next corner for us but we know that we will make it through because we trust in a God who promises to be with us always. He hasn't always made it easy for us over the last year but he has always been there for us. We know we can rely on God because he has a track-record of not letting us down.

Finally, a very big and heart-felt thank you to everyone who has supported us over the last year. In many ways, big and small, you have made our journey easier and for that we are extremely grateful.

To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen.

Jude 1:24-25

Baby Loss Awareness

2008-10-07T21:11:00.004+01:00

Moving away from our holiday tales for this blog entry... please remember baby loss awareness day which is the 15th October. Clare and I will be attending a service at the chapel in Ipswich Hospital this Sunday. Clare has written a poem in remembrance of Theo which she will read at the service. Please remember all those who have lost children in your thoughts and prayers at this time.

The Gift

Just a moment together,
A tiny glimpse of the life that was yours,
The face I had never seen, but knew so well,
A reflection of the love that brought you into being.

All too soon, the moment was gone,
Your soul was free,
In the arms of your loving Saviour,
Pain and sorrow blown away.

I felt the grip of overwhelming loss,
I felt my soul begin to fall,
My Lord reached out His arms and caught me,
Wrapped me in His ineffable love.

He showed me a picture of a mother,
The warmth of love in her face,
Her heart bursting with pride,
Then He lowered the mirror.

I am blessed because God chose me,
To hold your precious little body,
To love you unconditionally,
To be your mother,

Forever.

You are my gift.

By Clare Dungey
Mother of Theodore Edward Dungey – 10th October 2007

Viva Las Vegas!

2008-09-28T17:18:00.012+01:00

The next stage of our adventure was Las Vegas! In itself, Las Vegas probably wouldn't be top of our list of places to go but Candi had agreed to meet us there so we were very excited! Candi lost her baby daughter, Avery, 3 days after we lost Theo and she's written about it on her blog. (Please pray for her right now as she's going through a really hard time.) She brought along her good friend Katie. Here they both are outside the New York, New York casino.

Candi took us to the Cheesecake factory in Caesar's Palace. This is an amazing place because not only are the main courses gorgeous but they have about 50 different types of cheesecakes to choose from! Coming to a decision is not easy!

We took it in turns to relate our stories to each other and it was comforting to talk it through with someone who could really understand where we were coming from.

After the meal, we went for a walk along the strip, taking in the sights, sounds and most of all the heat! Even though it was night time, the temperature was still about 100 degrees. We stopped to take in several of the fountain shows outside the Bellagio. They play every 15 minutes and are set to music. The grace and movement of each water jet is incredibly spell-binding...Highly recommended.

The next day, we met up with Katie and Candi again for lunch at the hard-rock cafe. This was a definite favourite of mine because of all the rock memorabilia lining the walls.

One whole day of our Las Vegas leg was spent on a Grand Canyon tour. This was easily the most breath-taking sights in all of our trip. We flew 45 minutes in a 10 seater aeroplane from Las Vegas to a landing strip on the West Rim of the Canyon. This is one of the fantastic views from the air.

From there, we took a 5 minute coach journey to Eagle point and then to Guano point. The scale of the Canyon is beyond belief and in many places there are no safety rails so we felt like quite the adventurers!

On the way back we flew over the Hoover Dam. The trip included a sizable buffet lunch, making it a great day out. If any one is thinking of visiting the Grand Canyon from Las Vegas, we would definitely recommend the tour operator.

More of our Las Vegas pictures can be found here.

All too soon, it was time to move on again. But there were still two more cities to take in before heading back back home. Next stop: L.A.

All that Jazz!

2008-09-21T22:09:00.004+01:00

Having left Tonya's, feeling quite sad, we took a 5 hour train journey to our next location... Chicago! Of all the places on our itinerary, this was the biggest unknown. We'd picked it because it was close to Tonya's but probably knew the least about this city.

We were pleasantly surprised! Chicago is an amazing town with loads to do... but the most amazing and surprising thing about it was that everything seemed free! Free trams, free fireworks, free Jazz , free dance lessons, free zoo, free open-air cinema, free fountain display... this list just went on!

Although home to the Sears Tower, a few people had told us that the best view was from the Hancock Observatory. It costs about the same as going up the Sears tower but you get an excellent audio commentary (narrated by Friends, David Schwimmer) which gives you extensive information as you walk round the 360 degree vista. Here's one of the views from the top.

Chicago is on the edge of Lake Michigan (which to us looks more like an ocean!). In the centre of the picture is Navy Pier, which has all sorts of entertainment including a big Ferris Wheel and free firework displays on some nights.

This is a view, looking back at the city, as we went round the Ferris wheel. There were many boat tours operating from the Pier and we opted for the Sea Dog speedboat tour!

The picture above is the Cloud Gate sculpture in Millennium Park, affectionately known as "the bean" It's quite an impressive piece and provided lots of opportunities for taking warped photos! The park also offered a free, open-air showing of Hitchcock's "Touch of Evil". Here is our view of the Chicago skyline at dusk just before the film started.

And as if all this wasn't enough, we went to visit Lincoln Zoo (also free!) to get close to some fantastic animals including Gorillas, Pygmy Hippos and this Polar Bear. He liked to show off by swimming right at the glass and then darting away at the last minute.

So although we were only in Chicago for a few days, we managed to pack a lot in! You can see the rest of our Chicago photos here.

Next stop: Las Vegas!

The Party!

2008-09-14T14:59:00.009+01:00

First of all, apologies for taking so long to post the next installment of our trip to Tonya's. We all know how hectic life can be but there's really no excuse to keep you all hanging. Sorry!

On the second day we were with Tonya, she organised a party for us and invited some of the people we'd been in email contact with. This was great fun and certainly another fantastic highlight of our trip. It was really nice to be able to finally meet in person all the people we had been emailing.

So here are some quick introductions!

First up there is Cat, Dan and their son Owen.

Cat has a blog which we started following very soon after we found out Theo had Achondroplasia. If you haven't check out their story, please do (or at least check out the latest set of pictures they've posted... Owen is so cute!). Just to prove the point, here he is!

Next there is Jennifer, Cat's mum. Jennifer has been tremendously supportive and regularly checks our blog. She always has time to send us a thoughtful email or post an encouraging comment. Unsurprisingly, she bought us a little present of a Willow Tree statue to add to the many in Clare's collection. We were very touched by this gesture. It was also lovely to meet Jennifer's mother who, just like her daughter, kept us entertained with humour and wit!

This is Clare with Sarah and Kaela. Check out her blog here. Kaela is such sweet little girl and it was nice to meet her family (including Dad and brother Will) and talk through their trials and joys.

We also got to meet Aiden's family and so, all in all, it was quite an overwhelming experience!

The party was fantastic! As you would expect, there was a fair amount of eating done. My personal favourite was the giant cookie that Jennifer had made for us (but then it would be!)

It was great to get to know all these people a bit better. We all talked the afternoon and evening away, comparing our stories and discussing the differences between America and the UK... hours of fun!

A big thank you for all those who travelled to see us and to Tonya for organising and hosting the day. We were incredibly touched by your hospitality and friendship.

Next stop: Chicago!

Visiting Tonya!!

2008-09-04T18:28:00.015+01:00

There were so many highlights of our American trip but one of the major ones was definitely visiting Tonya. When we found out Theo had dwarfism at his 20-week scan, it was Tonya's blog - and the delightfully cute pictures of Knoah - that convinced us that everything was going to be ok. We've communicated a lot over the last year but it was an amazing experience to finally meet her and her family face to face.

I can't believe that anyone reading this blog doesn't know who Tonya is because she seems to be the social and information nerve centre for so many people who have kids with dwarfism. But in case you haven't heard of her...

From left (going clockwise) we have Will, Jacob, Tonya, Knoah, me and Hannah

Here's Knoah again!

Clare and I arrived at Detroit airport and found a welcome committee waiting for us.

Tonya's family live in Monroe, Michigan which was about a half hour drive from the airport. They live in a lovely house which Clare and I decided was typically American... all that was missing was the swing-chair on the front porch.

The first evening was spent at their favourite restaurant (excellent Italian food!) followed by a Jazz festival which was running over the weekend we were there. Much to my delight, we ended up at a lovely ice-cream place where I enjoyed what I thought was the best ice-cream ever (my opinion would soon change when we went to Maggie Moos the next day!)

The next day, we were lucky enough to have a party to meet lots of other people who we've met via the blog and who have supported us tremendously over the last year. I'm not going to say anything more about that... it's the subject for another post!

After the party, we went to the ultimate ice-cream experience! Maggie Moos serves the most amazing ice-cream ever. They make it on the premises and you can choose not only which flavour you want, but also from a whole array of sweets and goodies to have with it. I eventually decided on Peaniut Butter fudge with pieces of Reese's peanut butter cups and snickers. Definitely a peanutty extravaganza!

During our time in Monroe, we got to know the family really well. It was fantastic to finally get to meet people we had been emailing for so long. The experience was every bit as amazing as we thought it would be. Even though we were only there for a short time, we found a really close bond, especially with Tonya and Knoah.

How could you not love Koaah? Here he is doing "Monster Baby"!

I think this video captures the essence of Monster Baby a bit better!

Overall we had an superb time! Both Clare and I had a little cry once Tonya and Knoah left us at the train station. We missed them already! But I don't want to end on a sad note... tune in next time for details about the fantastic party Tonya organised for us where we got to meet even more people we had made contact with through the blog!

If you want to see more of our time with Tonya, check out the pictures here.

Voluntarily Mugged in Times Square!

2008-08-30T09:40:00.005+01:00

Tonya has just posted a comment saying "What is the CD picture of Andy?". I'm glad I have become good friends with Tonya as otherwise I might be offended by the fact that she has expertly managed to detect the one picture associated with a ridiculous story and highlight it to the world!

The picture I think she is referring to is this one:

I'd like to say that this was a picture of me with a famous rap star...Fifty Cent...P Diddy....some one like that... but we all know the story isn't going to pan out like that.

I'd just like to start by saying, in my defence, I had just stepped off a plane so I was tired, jet-lagged, etc.

So we were in times square and the guy in the picture stops me in the street. Clare knew right from the start where it was heading but what you can't see in the picture is the oblivious bubble I'm standing in! The guy tells me he's DJ BlingMan (or something). He's filming for MTV and can I look up at the top of the tall sky-scraper, where there's a camera(!), and repeat a message along the lines of "Yo, whasup, this is DJ BlingMan on MTV!" I do this, and then he puts his cap on my head and gets Clare to take a picture.

I'm having a great time, grinning like an idiot. Clare is rolling her eyes up and giving me a look that says I know what's going on but you are clearly clueless. Passers-by just think I'm a moron.

So then he thrusts two of "his" CDs in my hands and says I can have them. "What a lovely, generous man!", I think. THEN, he says that they would normally cost $10 each but he'll let me have them both for $10. I tell him I only have $5. He takes one CD from me and packs me on my way. "His" CD is a load of other rappers tunes he's downloaded and burnt onto CD. I haven't listened to it yet!

Of course, Clare tells me how she saw it all along and what a muppet I am! But you may be wondering where she got this lovely cap from!

Later in the holiday, we get stopped by another guy. Admittedly, this guy is funnier and working for a charity. After exchanging a few witty comments, he asks Clare if she'd like to donate money for the kids in exchange for a cap (I think this guy was legit....he had a pass round his neck and there were a few of them standing around). So although I payed $5 for a copied CD, Clare paid $10 for a (dirty) cap which she could have got for $3 from a street-seller. At least it was for a good cause!

New York, New York!

2008-08-27T20:19:00.008+01:00

Although I am dying to blog about meeting Tonya, Cat, Jennifer, Candi, Elise et al - I have decided to be disciplined and start at the beginning - New York!

(View of New York sky-line from Liberty Island)

The first week of our three week holiday was spent in New York. Despite getting caught in quite a heavy rainstorm when we first arrived, the temperature was generally very hot. We'd managed to get a very small apartment close to the subway and it served as a useful base. From here we took in all the sights New York had to offer - the Statue of Liberty, the Empire State Building, Ground Zero, Central Park and the Natural History Museum to name but a few.

We especially liked the food in New York (and just about everywhere else!). Here we are in Bubba Gump on Times Square.

I was particularly excited about the Alabama Mud Pie on the desert menu!

It turns out that American portion sizes are very large - This cake was meant for two to share but could probably feed a small family for a week!

It was an excellent start to the holiday - because we had a whole week, we had plenty of time to relax and recover from our busy work lives.

Anyway, I've only posted a few photos - if you are interested (and have a lot of time!) the rest of the New York pictures can be found here.

Next stop - Tonya's in Michigan!

We're back!

2008-08-25T17:48:00.006+01:00

Hi all,

Clare and I have finally arrived back from our American adventure! We've had an amazing time and met some even more amazing people. I will blog in great detail over the next few weeks but, as we're both very tired from all the travelling, I'll leave you with a few statistics from our travels to whet your appetite!

Number of miles flown: 11,417
Number of planes taken: 8
Number of hours in the air: 30
Number of states visited: 5
Number of cities visited: 6 (if you include Monroe!)
Number of times Andy has packed the suitcases: 7
Number of near death experiences: 2
Number of burgers eaten: Too many to count!
Number of pounds of weight gained by both of us: Too embarrassing to tell!
Number of pounds of money spent: Will have to let you know when I've put out my burning bank statement!
Number of hours sleep in the last 24 hours: 0
Number of amazing people we finally got to meet in person: Loads!!!!

That's all the energy I have! I'll be back in a few days to update you all a bit more. But finally, thanks to all the amazing people that made this trip one that we'll remember always!

We're going to America!

2008-07-18T16:41:00.004+01:00

Well, it's been over a month since I last blogged for two reasons; we have no further news on our baby situation and we have both been unbelievably busy with our jobs. I think it's fair to say that the work/life balance in the Dungey household is definitely off-balance!

We do have some good news though! We are taking a three-week holiday to America and we are going to meet up with some of our new blogging American friends! Our schedule is pretty hectic but here's a little breakdown:

New York - to see the sights
Monroe via Detroit - to spend some time with Tonya, Knoah and family
Chicago - whirlwind tour
Las Vegas - to meet with Candi who's flying in from Utah
L.A - Hollywood fame at last!
San Francisco - to soak up some American culture
Home - to sleep off the jet lag!

Tonya and Candi have both been incredibly supportive of Clare and I throughout the whole process of the pregnancy, birth and loss of Theodore and we are thrilled to have the chance to meet them in person at last! We may also have the chance to meet Jennifer who is Grandma to a little boy called Owen who has Achondroplasia. She has also kept in constant touch with us. We are very grateful to have so many people caring for us, both near and far.

The results

2008-06-07T09:26:00.003+01:00

Firstly, sorry it's been a while since I last posted anything. Both our jobs have been very hectic over the last month or so and it's been hard to find time to fit everything in. Thank you to everyone who faithfully checks the site!

We received our genetic results this week and they were not as positive as we had hoped. Our geneticist told us that they had found the genetic "change" in Theo that they were expecting. This confirms the Kniest diagnosis reported by the post mortem. Having tested my blood, they also found the same genetic change in some of my blood cells. This means that I exhibit mosaicism in these cells - some of them are regular and some are dwarf!

It is safe to assume that at least some of my sperm cells are affected in the same way as this is how Theo got the condition. In the worst case scenario, all of them will be affected and this has led the geneticist to give us a 50% chance of recurrence. Although, potentially the risk could be lower than this, it is very difficult to determine what percentage of sperm cells are affected so they have to go with the worst case scenario.

The presence of a genetic marker means that pre-natal testing will be possible at about 11 weeks. At the moment, Clare and I are still coming to terms with the situation and so have no clear idea of what we are going to do next.

Prior to getting the news, we had already decided that it would be wise to seek the counsel of a couple in our church to help us along the way. In addition to this, we had also considered that professional counselling might be a good idea too. Now that we have the results, we are definitely going to proceed with both of these.

We are also planning to see the genetic counsellor again, once the dust has settled, to ask him further questions about our options.

Sorry to have to break this news to everyone via the blog. Both Clare and I really value your continued prayer and support!

Taking the plunge!

2008-05-06T20:37:00.006+01:00

I've been meaning to post this for over a week now but have been so busy that I have only just got round to it! We received an email from Clare's friend Di who made the decision recently to get baptised. Baptism is a public declaration that you believe in God and want to follow him. It also involves getting quite wet! Christians get baptised to follow the example of Jesus who was baptised by John (... the Baptist, funnily enough!). This is part of the email that Di sent us, explaining why she made the decision.

Although I was Christened as a baby and Confirmed as a teenager in the Anglican church, and have been a practising Christian at Martlesham Christian Fellowship for 23 years, God has been nudging me for quite a while now to affirm my faith!

After many discussions, and much prayer, I was baptised by full immersion (adult baptism) this weekend, in the sea at Sizewell (church weekend at the Christian Conference centre there), to affirm my love for God (photos attached). It was amazing! God is good!

I just thought you would like to know, as your testimony through the blog, and your example of ongoing love for God through Theo's life and death has been one of many influencing factors in my decision.

This was very exciting news for us! Di has been a great support to us over the last few months (I still remember the lovely food parcel she had delivered as a surprise for us when we came home from work one day....mmm!). It is even more touching that Theo had his own small part to play in her decision. Clare and I are both very happy for her!

Meet the Sims!

2008-04-21T20:25:00.005+01:00

Clare and I had the great pleasure of meeting Geoff and Valerie Sims yesterday. Val has been in regular email contact with us since before Theo was born and has a particular interest in us as both her and her two boys have Achondroplasia. She has been very supportive and encouraging from the start and it was fantastic to finally meet her and Geoff in person!

They both came to our church service and then back to Clare's mum's house afterwards. We all talked for ages, each sharing different experiences both serious and amusing. By the end, it certainly seemed to me and Clare like we were all old friends. We both left feeling full of joy and I'm sure it won't be the last time we meet up.

God brings good things out of bad situations. Although losing Theo is still hard for us, we have met so many wonderful people who have enriched our lives more than we could imagine possible. For that, we feel greatly blessed!

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. Ephesians 3 20-21

One step closer

2008-04-16T21:54:00.003+01:00

Finally, I have some more news for you!

I had a phone call from our geneticist yesterday who told me that he had got the results of my x-rays back from Great Ormond Street. The good news is that they have said that they can't find any link between me and Theo! You may remember that when we first went to see the geneticist, he was concerned that I exhibited some of the same issues as Theo (shortness, wonky legs, arthritis, cloth ear, etc). He had thought there might be the possibility that I had mosaicism. If I did, it could potentially increase the risk that we could have another child with the same condition.

It seems that this is not the case and so hopefully the chances of recurrence are greatly reduced. We have yet to see him officially to get the full details and we still have to wait for the results of Theo's genetic tests to come back. Nevertheless, this is a very positive sign and gives us hope that there is light at the end of the tunnel.

The geneticist is still chasing Theo's genetic results to see if they're finished so as soon as we know anything, I'll let you all know.

Thanks to you all for your continued prayer and support!

Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the LORD.
Lamentations 3 22-26

When one door closes...

2008-04-09T20:18:00.005+01:00

Well, I'm finally back online after quite a few weeks off! Sorry to all those who faithfully check the site and have been disappointed to find nothing new on it. This is partially because Clare and I have just spent 10 days in lovely Cornwall (I'll post some pictures soon!) but mostly because I'm a bit lazy!

Anyway, whilst we were away, Clare got some rather surprising news (I'll preface this by saying it is not baby-related before everyone gets too excited!). The head mistress of her school has left. This means that the current head of the junior school has to take overall headship of the whole school...which means that....

Clare Dungey is now acting head teacher of her Junior School!

... at least for the next term anyway.

This came as quite a shock to pretty much everyone! Although this is a massive leap up for Clare, the new head mistress is sure she up to the challenge. It is quite daunting for Clare because there are so many new things to learn so please remember her in your prayers. It is an amazing opportunity though so we are both very pleased. She led part of her first staff training day today (with very little notice) and seems to have been very successful.

So as we reach the 6-month anniversary of meeting Theo tomorrow, another door of opportunity has opened. Although, it is not in the same league as having a baby, it shows that God has a plan for us and that life does go on.

We'd just like to thank everyone who has supported us, raised money for Theo, prayed for us, written us emails, cooked for us and generally loved us! We couldn't have coped without you!

Jim's half marathon result!

2008-03-17T14:38:00.003Z

My good friend, Jim, ran the Bath half-marathon yesterday in memory of Theo to raise money for the Restricted Growth Association. I have just received this email from him:

Hi,

Thank you very much to those that sponsored me for the Bath Half Marathon yesterday (and for those that haven't yet done so, you still can via the web-link!!).

We've raised well over £600 in web-donations alone, and with gift aid the total might exceed £1000. I can't thank people enough for their generosity.

In terms of the half marathon result, I can barely walk today, but completed 13.1 miles in a PB of just over 86 minutes. That time puts me a respectable 356 out of around 14,000 entrants.

Hope to catch up with you soon. Thanks again.

Jim

It's still not to late to sponsor him here if you want!

Well done to Jim for such a fantastic result (it's been known for it to take me 86 minutes to manage 1 mile!). Also, our deepest and heart-felt thanks to him for everything he's done. We really appreciate it and know that the money raised will go towards supporting other families like ours!

Waiting

2008-03-10T17:41:00.004Z

Today is the 5 month anniversary of Theo's birth and death. It has passed largely without incident or upset which I take as a sign that, although life is still hard at times, we are both slowly coming to terms with things. Clare is cooking me a nice dinner of toad-in-the-hole as we speak (despite being a bit under the weather!).

We are still waiting for the results of Theo's genetic tests and my x-rays. The waiting seems to be harder than the grief these days and it's so very hard to be patient when all we want to do is start our family.

We had a church weekend just over a week ago and, whilst looking through the book stall, a book jumped out at Clare because of its title..."Wait". The book contains a poem that's apparently done the email circular rounds in the past. It talks of how God is capable of giving us everything we want but often tells us to wait because it is by doing this that we learn more about him and grow in Christ. The words of the poem are truly inspired!

Wait by Russell Kelfer Desperately, helplessly, longingly, I cried; Quietly, patiently, lovingly, God replied. I pled and I wept for a clue to my fate... and the Master so gently said,"Wait." "Wait? you say wait?" my indignant reply. "Lord, I need answers, I need to know why!" Is your hand shortened? Or have you not heard? By faith I have asked, and I'm claiming your Word.
My future and all to which I relate hangs in the balance and you tell me to Wait?" I'm needing a 'yes', a go-ahead sign. Or even a 'no,' to which I'll resign. You promised, dear Lord, that if we believe, We need but to ask, and we shall receive. Lord, I've been asking, and this is my cry: I'm weary of asking! I need a reply.
Then quietly, softly, I learned of my fate as my Master replied again, "Wait." So I slumped in my chair, defeated and taut, and grumbled to God, "So, I'm waiting...for what?" He seemed then to kneel, and His eyes met with mine... and He tenderly said, "I could give you a sign. I could shake the heavens and darken the sun. I could raise the dead and cause mountains to run.
I could give all you seek and pleased you would be. You'd have what you want, but you wouldn't know Me. You'd not know the depth of My love for each saint. You'd not know the power that I give to the faint. You'd not learn to see through clouds of despair; you'd not learn to trust just by knowing I'm there. You'd not know the joy of resting in Me when darkness and silence are all you can see.
You'd never experience the fullness of love when the peace of My spirit descends like a dove. You would know that I give, and I save, for a start, But you'd not know the depth of the beat of My heart. The glow of My comfort late into the night, the faith that I give when you walk without sight. The depth that's beyond getting just what you ask From an infinite God who makes what you have last.
You'd never know should your pain quickly flee, what it means that My grace is sufficient for thee. Yes, your dearest dreams overnight would come true, but oh, the loss if you missed what I'm doing in you. So, be silent, my child, and in time you will see that the greatest of gifts is to truly know me. And though oft My answers seem terribly late, My most precious answer of all is still "WAIT".

We know that the sentiments expressed in this poem are true of the God we put our trust in. Although loss and waiting patiently are hard to bear, we believe God uses these things to develop our faith and character so that we can become more like Him.

Raising money for the Restricted Growth Association

2008-02-28T18:24:00.004Z

I mentioned a few months ago that my old school friend, Jim Ford, will be running the Bath half-marathon in memory of Theo. He is getting sponsored to do this and the money he raises will be given to the R.G.A - an organisation that supported us during our pregnancy and would have been invaluable to Theo had he survived. The date is set for March 16th and he's already raised over £400 in sponsorship money on the RGA's website alone.

If anyone wants to sponsor Jim, they can do so here. Clare and I continue to be very moved by this act of kindness. We want to thank Jim for doing this and wish him every luck on the day!

Theodore's Photo Album

2008-02-24T12:59:00.012Z

Hi All, Clare here! Thought it was about time that we shared some more of Theo's Photo Album with you. We also wanted you to meet the people who have supported us and stood by us whenever, wherever and however we need them - our Family. We are so grateful they were able to be a part of that special day we had with Theo.

So on with the album...!

It's Time!

Sunday 30th September - The day before Induction Day

It's Time - Take 2!

Sunday 7th October - The day before our 2nd Induction Day

Theodore Edward Dungey arrives at 3.56am on 10th October weighing 6lb 10oz. He is suffering from severe respiritory problems. After 5 hours of hard work by Theodore and the doctors, we all agree that our little boy has tried his best and decide that he should spend his last few minutes on earth in the arms of his Mummy and Daddy.

He's here!

Mummy has her first long-awaited cuddle.

Joy and Sadness
Daddy holds his son for the first time.

Chubby Cheeks!
Mummy and Daddy note that he has not escaped inheriting their chubby faces!

Our Little Man
Theo has very short forearms and legs as predicted in scans. Mummy thinks that this makes him even more special and beautiful!

Shortly after, Theodore peacefully leaves to be with his Heavenly Father. Mummy and Daddy are filled with sadness but agree that Theo is now in the best place waiting for them.

Back on the Ward

Theo is brought down to the ward to spend the day with Mummy, Daddy and their families.

The Grandparents

Grandma & Grandad Richardson

Grandma Dungey

Grandpa Dungey

Aunties and Uncles

Auntie Sarah & Uncle Mark (Clare's Brother)

Uncle Adam (Clare's Brother) & Auntie Lizzi

Auntie Juliet (Andy's Sister)

Andy's brother, Tim, also rushes from London to be with us. We spend the day cuddling and enjoying Theo. During the afternoon, Mummy washes and dresses Theo in his own clothes, including the cardigan knitted by his Grandma Richardson.

Handsome Little Man!

In the evening, the family leave and Mummy and Daddy prepare to say goodbye to Theo, safe in the knowledge that he is with his loving Lord and Saviour.

One very proud Mummy!

Our beautiful little boy - Theodore Edward Dungey

A picture paints a thousand words!

2008-02-15T15:44:00.005Z

A while back, I posted the pictures Clare took of Southwold on the day we scattered Theo's ashes. About the same time, we went to visit my parents and Clare admired the "cascade" sunset print they have on the wall in their lounge. My mother, being the clever woman that she is, put two and two together and came up with an excellent idea for Clare's Christmas present using the Southwold photo. As a DIY-phobe, I had to wait for help from Clare's dad before I could get round to hanging it. The result is here:

It now takes pride of place in our lounge and is a lovely reminder of our boy!

In other news, I went to the hospital today to have a skeletal survey done. They x-rayed my legs, spine, arms, ankle and pelvis. The x-rays will be sent off to Great Ormond Street so that they can determine whether I have a mild form of the condition they think Theo had. This will hopefully inform us better about the likelihood of it happening again. I imagine it will take quite a while for the results to come back so I will post any news when we get it.

So, I'm trying to keep my word about posting more often! In the next entry, Clare will post some more pictures of Theo.

"You were always on my mind"

2008-02-11T20:34:00.001Z

Clare was teaching her year 3 class last week and was looking at silent letters with them. And what better example of a silent K than.....Knoah! Here's the proof!

Speaking of which, Knoah is back home after his recent hospital trip which is a real answer to prayer. Check out all his latest adventures here (including some very cute pics!). To top it off, we got a phone call from Tonya last night which is always a lovely surprise. I think she and Clare concluded that both a trip to London for Tonya and a trip to America for us was the best plan!

Anyway, we are both doing ok, although Sunday morning services are proving to be emotional at times. My sister, Mum and Dad came to visit yesterday and there wasn't a dry Dungey eye in the house (not very helpful when Clare and I had to do a drama half way through the service!)

But we're ok. Clare's off on half term this week and I have a few days leave which will be very nice.

The number of hits and comments from people has pushed me into thinking that I haven't spent enough time blogging recently. I will endeavour to write far more reguarly from now on so please keep checking.

He is definitely 'our gift'!

2008-02-04T21:29:00.001Z

Thought it had been a while since we had posted...I should warn you though that this is Clare typing, not Andy so this entry may not contain the usual wit to which you have all become accustomed!

No news I'm afraid so we continue to wait - Andy in his usual calm, reasonable manner, me in my, 'Why haven't they called?!!' frenzy! We will, of course, let you know when we hear anything.

Andy and I were talking the other day and I casually mentioned that I had begun the process of writing a song for Theo, to which he replied that he was also writing a song for Theo. I asked him what it was called and he said that he had decided to call it 'The Gift'. My song is already titled 'My Gift' so I'm guessing Theo is definitely our gift! When we have finished them (which may be quite a while!) we will put them on the blog.

I have also decided to put some more pictures of Theo on the blog very soon so watch this space!

Like Father Like Son

2008-01-16T18:11:00.001Z

Yesterday, we had our first genetics appointment. Although we've had a lot of input from various doctors regarding the genetic side of Theo's condition, this was the first time that we had talked to someone who was fully qualified to comment on the genetics.

We found out that Theo's genetic samples have yet to be submitted for testing as they were waiting for the go-ahead from us to proceed. Now that they have that, the samples are going to be sent to a laboratory which specialises in skeletal dysplasias. The geneticist told us that they might be able to get the work done at Cambridge, but failing that it would need to be sent abroad. The time scale is 2 months in the best case, but could be anything up to 6 months.

The results of Theo's genetic tests should hopefully reveal that he has the gene that causes SEDC/Kniest and so confirm the original diagnosis. If this is the case, it will mean that they have a genetic test which can be conducted at about 12 weeks into pregnancy if that is what we decide to do. In the absence of any such test, early growth scans should be able to pick up indications of a problem.

So far, so good... but now we get to the chance of recurrence. As a back drop to this, the problems associated with Collagen defects (such as SEDC/Kniest) include eyesight, hearing, bone growth, early on-set of arthritis, spine and joint issues, amongst others.

Now as a under-average height, arthritic, half-deaf, flat-footed, talipes-affected, loose-hip jointed kind of guy... this set off a few alarm bells! Although the geneticists we saw whilst Clare was pregnant didn't seem that concerned with my various ailments, it turns out they might have more of an impact than originally thought now that the diagnosis has changed from Achondroplasia to Kniest or SEDC.

It is possible that I have Mosaicism with regards to the collagen defect which effected Theo. As I understand it (and here comes the science part), this would mean that a certain subset of my cells would be affected by the defect and, if this were the case, would account for my one or two problems. If my sperm were effected, it would explain how Theo ended up as he did.

In terms of predicting the likelihood of it happening again, it gets a little tricky. As I understand it (and I probably don't!), if I suffered from this problem, and all my sperm were defect, then that would leave us with a 50% chance of recurrence. If only 1% of my sperm were affected, that would take the percentage down to a half.

Unfortunately, it seems unlikely that they will be able to give me a percentage sperm defect amount and so we may not be able to find the exact chance of it happening again.

But, before we get too ahead of ourselves with the doom and gloom, they haven't said that I have this problem yet. It's just an avenue they think is worth exploring. My issues could be all coincidence. After all, I lost my hearing in one ear when I was 3 so that probably isn't genetic... the arthritis could just be a result of my bad legs. The are going to take x-rays of my long bones, spine, etc and send them to Great Ormond Street for examination. That will give them more of an indication of whether they think I'm affected.

So that's the score. I haven't covered everything off because it gets quite detailed and I don't want to bore people with technicalities! If you want to know more information, drop me a mail and I'll fill you in.

How does this make us feel? A bit despondent, if I'm honest because we were quite hoping that it would just be "one of those things" and we wouldn't have to worry about it again. Also, we're going to have to wait even longer for answers that may be difficult to take and require us to make hard choices.

Nevertheless, we know that God has a plan and that this plan is good. We know that He will help us on this new path and give us the strength to get through it because He's done it before. So, we are in the process of picking ourselves up and getting on with it. Please pray for us, particularly Clare as she's taking this quite hard and had really hoped we could move forward with our family in the near future which seems unlikely now.

I will keep you posted with more news as it happens. Thanks for reading!

Happy New Year!

2008-01-01T12:54:00.000Z

Firstly, Clare and I wish all our blog readers a Happy and Prosperous 2008!

Secondly, we saw our paediatrician yesterday and he went through the post-mortem results with us in greater detail. The overall assessment is still the same but we did learn some new things as a result of the visit.

The post-mortem revealed that Theo was more poorly than we had realised from the earlier results. He had no cartilage around his trachea and this is one of the reasons why breathing was so difficult. The airways could inflate while air was being pushed into him but then collapsed before carbon dioxide could be exhaled. The paediatrician feels that such a condition made Theo "incompatible with life".

In addition to this, there were slight issues around the top and bottom of his spine which meant some of the vertebrae were fused. The 20 week scan had shown some indication of this but hadn't been evident on subsequent scans.

The report concludes with a likely diagnosis of type II collagenopathy and Kniest and SEDC are both types of this disorder. Such a condition effects the connective tissue and clearly problems with the cartilage were quite prolific in Theo.

We discovered that samples from the post-mortem have already been analysed by Great Ormond Street Hospital in London. As conditions such as Theo's are so rare, there is a European group which gathers information and analyses it and Theo's samples have been sent to Amsterdam as well. He certainly is well travelled!

Once the results from Amsterdam have returned, we will be able to proceed with the genetic tests and we hope to get a genetics appointment fairly soon.

So, overall, another positive visit. Although difficult for us, it is reassuring to know that Theo would not have survived and therefore his little life ended quickly without needless suffering. We feel blessed that God, in his mercy, did not put us in a position where we had to make difficult decisions. We continue to be hopeful that this is just an isolated occurrence, though we still must wait for further results before we know anything for sure.

On a final note, we know that for many people as for us, 2007 has been a difficult and testing year. We take courage in the strength and resolve that has been demonstrated by so many of our friends in these hard times. We, like many people we know, acknowledge that the strength we have comes, not from ourselves, but from God.

How shall we look back? Naturally, with a great deal of sadness but also with joy because God is working out His plan in our lives. Something Clare wrote on Tonya's blog highlighted an interesting point for me. In the Bible, it talks about God using the things that are weak and seemingly nothing to promote His Gospel message. He does this so that no-one can boast about themselves but only about God.

Brothers, think of what you were when you were called. Not many of you were wise by human standards; not many were influential; not many were of noble birth. But God chose the foolish things of the world to shame the wise; God chose the weak things of the world to shame the strong. He chose the lowly things of this world and the despised things—and the things that are not—to nullify the things that are, so that no one may boast before him. It is because of him that you are in Christ Jesus, who has become for us wisdom from God—that is, our righteousness, holiness and redemption. Therefore, as it is written: "Let him who boasts boast in the Lord."
1 Corinthians 1 v26-31

Theo was certainly little and weak but, through him, many life's have been touched and more people have learnt something new about God than would have been achieved without him. So, in his short life, God used Theo for His glory just as He promises to use all of us if we let Him.

And looking forward to 2008? Faith in God gives us a hope for the future, just as the Bible promises.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29 v11

This hope is not wishful thinking that things will turn out for the best. In fact, the Bible never promises that things will always be easy and go the way we want them to. What it does promise is that God is there with us every step of the way... that He has a plan that is glorifying to Him and that we have a part to play in it... that He loves us and whatever life on Earth puts our way, we have the promise of heaven to look forward to.

So the big question for 2008 is not "How will life turn out for me?" or "What will happen next?", though these are important questions. It is "How is God going to use me for His glory this year?" If this is a question you've never thought about before, think about it today. God wants to answer that question and, if you let Him, your life will never be the same again.

Happy New Year!

love,
Andy and Clare

Happy Christmas!

2007-12-24T19:47:00.000Z

Clare and I wish all the readers of our blog a very Happy Christmas! We pray that amidst all the turkey, presents and mayhem you will be able to spend some time thinking about the real "reason for the season".

We would also like to thank everyone for their love, prayers, supportive messages and practical help over the last few months. You have all helped us more than you could ever know and we are extremely grateful... We couldn't have got through it without you!

We hope you enjoy your Christmas!

Love
Andy and Clare

Post Mortem Results

2007-12-16T20:25:00.001Z

On Friday, we went to Addenbrookes to see the consultant who did all Theo's pre-natal scans. By chance, the final post mortem results had been released that morning and so he went through the summary with us. There are no genetics results as yet and we are hoping to go through the post mortem results more thoroughly with the paediatrician in Ipswich who helped treat Theo. Nevertheless, some of the picture is starting to come together.

The results concluded that Theo had either Spondyloepiphyseal Dysplasia Congenita (SEDC) or Kniest Dysplasia. These two are very similar in characteristics and are both mutations of the same section of gene (that's as about as much technical detail as I can give when it comes to genetics!). Although not necessarily lethal, possible problems of these conditions include a small trachea and this was clearly the case with Theo.

Both the conditions are autosomal dominant which means that Clare and I could not carry the gene without having the condition itself. We clearly are not effected so this is good news because it means that it is not something in our genes that we passed on and (hopefully!) this reduces the odds of recurrence.

A random mutation at conception is still one possibility but another, which we were not previously aware of, is Gonadal Mosaicism. This condition could be present in either of us and is where a percentage of our gametes (sex cells) carry a mutation which could cause Theo's condition.

We are now waiting to see the genetic counsellor who will hopefully be able to shed some light on which of the two possibilities is most likely and advise us on what to do next.

We also are still awaiting Theo's genetics tests which will show whether or not he carries the offending gene. If he does, the doctors will be able to offer us genetics tests early on in any future pregnancy to determine whether or not the situation has arisen again. Even without the genetic test, our Addenbrookes consultant seems to think that growth scans at 12, 16 and 20 weeks will be able to diagnose the condition by measuring the long bones.

So this is definitely a positive step forward and it is nice to see things moving along at last. However, it looks like it may be 6 weeks until we can see the genetic counsellor and then a further wait whilst they come to a conclusion. As you can imagine, this is a little frustrating as we would like to try again to start a family as soon as possible so please pray for patience! Nevertheless, we trust in God's timing. We know that it has proved correct in the past and hope that it will do the same in the future.

Thank you to everyone who has continually thought of, prayed for and helped us. We really appreciate all that you do!

Did you hear it too?

2007-12-09T20:32:00.001Z

Did you hear it too?

They say that angels don’t appear nowadays.

Yet that’s what it was like, a mighty choir, joyful, glorious.

A strange song, ebbing and flowing like the eternal sea,

Far away beyond the stars.

Did you hear it too?

Perhaps I just imagined it. Wishful thinking. Was it all in my mind?

And yet the feeling was real. The love was real, overwhelming,

Beyond all human sense or logic, bright as the sun,

Dazzling my eyes.

Did you hear it too?

Did you hear it as your soul flew to the arms of your Saviour?

Did you know that you would leave us grieving?

Did you know how hard it would be?

Did you know that we would never forget?

Did you hear it too?

That majestic choir would have engulfed all other sounds.

All you would have heard was the music of the love of God.

One day we shall hear it too.

One day we shall all sing together.

by Hugh Dungey

We're all going on a....winter holiday!

2007-12-03T10:24:00.000Z

Clare and I are off to Centre Parcs for 5 days today. It should be a very relaxing break and is well needed!

In case you missed it, Candi left a message on my last post to let us know that she knows exactly what we're going through. Her blog tells an uncannily similar story to ours! Her daughter, Avery, was diagnosed with a lethal form of Skeletal Displaysia (possibly Thanatophoric) and tragically was called home just before she was born on 13th October.

Please take time to read Candi's story and pray for both her and her husband as they come to terms with their loss.

Hopefully, we will return well-rested and prepared for the run up to Christmas!

The final farewell

2007-11-25T21:02:00.000Z

Today we went to Southwold to scatter Theo's ashes. Southwold is a special place for me and Clare. We do a beach mission there every year; I proposed to Clare there and we spend our anniversary there every year.

It was nearly sunset when we arrived and very cold at the end of the pier! We had each written a letter to Theo which we read aloud. I read some Bible verses and Clare said a prayer before we scattered Theo's ashes out to sea. The wind was strong and the ashes flew at great speed across the ocean.

Although the occasion was sad for both of us, we felt a sense of relief that Theo had finally been laid to rest.

God blessed the proceedings by supplying us with this beautiful sunset.

The Waiting Game

2007-11-16T21:27:00.000Z

The next major milestone in our lives is getting the post-mortem results. These will have a large and potentially challenging effect on how we will proceed with starting a family again. Whilst Clare was at the hospital this week having physio on her knee, she asked to see the paediatrician who treated Theo. He very obligingly took time out to see her but it looks like we might have to wait slightly longer than we envisaged.

Originally, we were told the post-mortem would take 4 - 6 weeks and that time is almost up. The doctor has said that, because of the genetic testing, we may have to wait a further month before we hear anything.

This is a little disheartening, but we trust in God's plan and that his timing is best. As soon as we know anything, we will definitely post here.

On a much more lovely note, Clare decided she would ring Tonya on Knoah's birthday yesterday. Tonya was most surprised to hear from us! We could hear Knoah gurgling happily away in the background while we both chatted to Tonya. She is every bit as lovely and caring in person as she is on her blog and it certainly made our evening.

During the phone call, Tonya commented on how amazing the human spirit is amongst the small group of people we know that share the same kind of experiences. I am so pleased that, despite not having our own little person, the bond with the people we have met is not growing weaker, but deepening.

"So, how are you both doing?"

2007-11-12T20:36:00.000Z

It's a calendar month and two days since Theo's birth and we've heard that loving and interested question a lot during that time. It is comforting to know that so many people are still thinking about us and praying for us. Once again, thanks to everyone for their support!

So, how are we dong? Not bad... Clare is healing very well from the Cesarean and is already very active. She's filling her time making our lovely house even nicer and buying and selling things on Ebay. This has had dangerous implications for my bank balance and anything that's not nailed down in the house. The sliver lining to all this is that I get the feeling I will get more birthday presents than I could possibly merit!

So, how are we really doing? We have good days and bad days. It's a kind of sadness that's hard to quantify. It doesn't seem to be about anything particularly, such as seeing other babies or thinking about an empty nursery (although such things can trigger it). It just descends like a blanket and, unlike other things that can be fixed, it just stays there until it decides to leave. For Clare, it's worse at night-time. For me it comes less often.

Despite this, We are slowly getting back to normal I think. I'm back at work now and Clare is helping her brother with his valeting business so there are things to fill our days. Generally we remain positive and upbeat and we know that kind of strength must come from God because we certainly couldn't manage it by ourselves.

I'm sorry it's been a while between posts again. Before, this blog had a definite purpose and every other person I talk to seems to have read it. Now, I'm not quite so sure what to write. Although I know that everyone is interested in the results of the post mortem and any subsequent developments, there doesn't seem to be that much to say in between.

So, until I find a new direction for the blog, the posts will probably remain infrequent. If you want to be notified of when new posts appear on the blog to save you keep checking, please send your email address to littledungey@hotmail.co.uk and I will send you an email whenever anything new comes up. We would also ask you to keep praying for the post mortem and genetic results - that they would be clear and enable us to make decisions for our future.

Thanks once again to everyone out there who has supported us so faithfully! We couldn't have done it without you.

Hot off the press!

2007-11-02T15:38:00.000Z

Apologies to everyone for not posting sooner. We recently had an interview with our local paper, the Ipswich Evening Star and the result is below.

Evening Star
02 November 2007 | 14:46

AN IPSWICH couple whose newborn son died soon after birth today thanked doctors who battled for five hours to try to save him.

Andy and Clare Dungey are today coming to terms with the loss of baby Theodore, but took time to thank the NHS health professionals for their care.

Theodore, who had dwarfism, died in Mrs Dungey's arms after being born with breathing difficulties. But despite their loss, the couple today said thank you to staff at Ipswich Hospital.

Mrs Dungey, a teacher in Woodbridge, said: “We saw how hard they were working to save him and we know they couldn't have done anymore.

“One of the worst things with grief must be thinking 'if only' but there's no part of us which thinks if only they'd tried that.

“Dr Matthew James the paediatrician told us Theo mattered, and even when it looked like there was no hope he said he wanted to try one last thing. That's what we wanted to hear, to know they did everything possible.”

The dwarfism was diagnosed early in the pregnancy, but although they knew respiratory problems were a risk, there was no way of knowing how serious they were.

Mr Dungey, a BT worker, said: “Theodore would have had a poor quality of life so if getting the tube in had been successful, I don't know if it would've been best.

“We didn't want to bring a child into the world if they were going to suffer.”

Mrs Dungey was induced on October 10 and had a caesarean section. Theodore appeared well until he was lifted out and stopped breathing.

He was able to breathe for a short while at a time, but doctors could not put a ventilation tube in to sustain his breathing because of the unusual anatomy of his throat.

Mrs Dungey said: “He wasn't with us for very long but we feel his life was for a reason.

“We are Christians and know he was meant to be in our lives. He gave us an amazing experience and opened our eyes to dwarfism.

“We think about what he brought us rather than just the loss.”

Mr and Mrs Dungey, of Ditchingham Grove, also thanked other hospital staff who helped them, including those from the midwifery, physiotherapy and registration suite departments, and the funeral directors.

The couple, both 28, were allowed to watch on as the doctors treated Theodore, and when doctors stopped treatment, held him for around five minutes before he died.

They have written a blog about their experience at http://littledungey.blogspot.com/

A funeral service was held at Colchester Road Baptist Church and Theodore was cremated. Mr and Mrs Dungey are hoping to scatter his ashes at Southwold, where they got engaged.

N Do you want to thank hospital staff? Write to Your Letters, Evening Star, 30 Lower Brook Street, Ipswich, IP4 1AN, or e-mail eveningstarletters@eveningstar.co.uk

We wrote a letter to them initially because we wanted to let them know about how excellent the hospital had been. They were interested in our story and decided to write an article about it. The article even mentions this blog and hopefully this will bring some of the issues and adventures we've faced to a new audience.

Pictures of Theodore

2007-10-24T19:53:00.000+01:00

I thought it was about time I put up some pictures of our little boy so here they are. Just to be warned that some of them are him after he died but he looks very peaceful. The white cardigan Theo is wearing was knitted by his Grandma (Clare's mum).

Clare would like it noted that she didn't exactly look her best when these pictures were taken!

We're obviously biased but we think he's beautiful!

Sorry it's been a while between posts. Both Clare and I have come down with some kind of flu, probably as the result of a hectic week!

The funeral last Friday was lovely and Neal, our pastor, spoke some excellent and comforting words. The service wasn't as hard as Clare and I expected and we are convinced that is because so many people were praying for us at the time. We have now got Theo's ashes back and will scatter them in Southwold (our special place) very soon.

We now await the post mortem and would ask for your prayers for clear results so that Clare and I can consider our prospects for the future. We will let you know when we get the results - the Dungey Baby Saga continues!

Donations

2007-10-18T16:25:00.000+01:00

Yesterday, I was pleading for sympathy and now I’m back asking for money! Well, not exactly, but a number of people have asked about ways they can give in remembrance of Theo. Clare and I are pleasantly surprised that people who have already given so much, should want to do more. However, please don’t feel you have to give anything else.

If you do want to give, we have decided that monetary contributions will be split between our Church growth fund and the RGA. Our church is expanding fast and the building is not big enough to keep up. We know that Theo would have been a well-loved member of the church and it seems fitting to contribute towards its development. The Restricted Growth Association provided us with support and well-written literature when we first inquired about Theo’s condition. We know they would have been a tremendous support to us and we would like to give back to them.

Donations can be sent to (envelopes marked "In memory of Theodore Dungey"):

Colchester Road Baptist Church,

Colchester Road,

Ipswich,

Suffolk.

IP4 4ST

People's amazing thoughtfulness

2007-10-17T06:55:00.000+01:00

As I start to write this, I'm thinking to myself that I have to be very careful how I phrase what I want to say. The last thing I want is for people to think that I'm fishing for sympathy or attention. The purpose of this post is to thank people and not to hint for more from people who have already given so much.

With that caveat, I have to say that Clare and I are truly amazed at how thoughtful people are. I have to confess that I'm pretty bad when it comes to helping people who are going through a hard time. I might think about them occasionally and pray for them in church. Clare is much more thoughtful and very good at writing cards but such things never really enter my head.

But the amount of love and support we have received is beyond belief! There are people who text us regularly, never expecting a reply, just to let us know they are thinking of us. There are people who aren't content to send one email of condolences and then be done, but to write frequently just to to say they are praying for us. A school friend of mine wrote to me yesterday to say that when he runs the Bath half-marathon next year, he's going to raise money for the Restricted Growth Association in memory of Theo.

(Just to re-iterate... don't feel bad if you feel you don't fall into any of the above categories. Just by reading this blog and involving yourself in our lives is a tremendous support!)

So, thank you to everyone who has made this last week that little bit easier. A number of people have commented on how strong and positive we are being. Just to clear that up, for the record; If we seem strong, it does not come from ourselves but from God who gives us strength. If we seem positive, it is because we are surrounded by caring people who uphold us in thought, prayer and action.

So thanks again. We would be in a worse state without you!

Baby Loss Awareness Day

2007-10-15T13:24:00.000+01:00

Today is Baby Loss Awareness Day in the UK. To mark this, there was a service at the chapel in Ipswich hospital yesterday and Clare and I decided to would be good to attend. We lit a candle for Theo and they gave us each a white rose. Although sad, it was comforting to share the service with people who could relate to what we are going through. It was nice to see that a couple of the midwives who we had met on the ward were there as well.

We were also given a balloon which we are going to release today. I think 7 - 8pm today is the actual time for rememberance so Clare and I plan to light a candle and say some prayers for Theo then.

We're back home

2007-10-13T15:02:00.000+01:00

Clare was discharged from the hospital yesterday and we're back home. Now that I have a few minutes breathing time, I thought I'd post some more details about the last few days. I know many people who read this blog have been greatly saddened by what has happened. My main motivation for this post is not to make you all more sad by explaining the details, but to let you know some of the positive aspects. Although the outcome for all of us has been devastating, it was the best for Theodore.

Clare's waters were broken on Tuesday night and she was put immediately onto a drip to start her contractions. At about 10pm, these were getting strong so she opted for a epidural to ease the pain. By about 3am, she was not progressing as fast as the doctors hoped, so they decided that she should have a C-section.

Once they got Theodore out, it was clear that they were having difficulties with his breathing. They tried to get a ventilating tube into him for the entire time Clare was being sewn up. Eventually, Theodore went up to the Special Care Baby Unit and Clare went into recovery. From there we went back to the ward to await news.

Eventually, the chief-paediatrician came to see us and explained that, although Theodore could breathe by himself, he didn't think he would be able to keep it up for long and they were still unable to ventilate him. After more waiting, we were allowed up to the unit to see him as the doctors continued to work on him. They told us again that they were not hopeful that they would succeed. It was clear to both of us how very poorly Theo was and, although partly we wanted them to get the tube in, a bigger part of us already realised that if they did, he would have a very poor quality of life and that we did not want him to suffer unnecessarily.

Eventually, we told them that it would be fine if they stopped. Theo spent his last few minutes with us, free from the drips and machines, in a quiet room. There we cuddled him, prayed for him and took some pictures so we could remember him. He died peacefully in his mummy's arms.

From there, the hospital allowed us to spend the rest of the day with him. Our families all came to see him and hold him. Once alone, Clare and I cleaned him and dressed him in his own clothes. He looked beautiful. At the end of the day, we said our goodbyes and they took him to the Chapel of Rest.

Although this has been a difficult time, we feel that Theodore was given every available opportunity. The doctors worked for 5 hours to try to save him and we felt they did everything in their power. Although the C-section was traumatic, if he'd been delivered naturally, he probably wouldn't have made it out. We were lucky that there was nothing else going on that night which meant we had every available person there, including an extra, experienced anaesthetist and paediatrician. We couldn't have asked for a higher level of care. Despite our sadness, this has given us peace about the situation.

The main doctor involved said that Theodore's anatomy was very unusual; He had a large tongue and awkward airways that made it impossible to get a tube in successfully. They think that, from the size of his stomach, he could have had digestive issues too. All these details were impossible to determine from the earlier scans. They have taken samples to try and understand exactly what condition he had as this will help us to know what we do about future children. Unfortunately, they feel that this information may not be enough so he has to go for a post-mortem as well. Despite being sad about this, we take comfort from knowing that this investigation may help our future children and research for other families in this situation. As long as this doesn't take too long, the funeral will be on Friday.

We have been tremendously well supported by our family and friends and have received more support than we could imagine. Thank you to everyone who has been thinking and praying for us. We feel very loved and have taken great comfort from people sharing their own situations with us. Please don't underestimate what your support means to us and we're so proud that Theo has touched so many hearts.

We don't know why God has chosen this path for us. We have learnt so much about dwarfism and made so many friends along the way, we feel sure He has a plan for us long term. As He helps to build back our life again, I am sure he will reveal this plan to us.

So our hearts are heavy with grief, but we know that for Theodore there is no more suffering because he is in heaven. We don't know exactly what that is like but the Bible verse at the end of this post promises that there is no pain or tears. We have no doubt that our little Theo is with God.

Then I saw a new heaven and a new earth, for the first heaven and the first earth had passed away, and there was no longer any sea. I saw the Holy City, the new Jerusalem, coming down out of heaven from God, prepared as a bride beautifully dressed for her husband. And I heard a loud voice from the throne saying, "Now the dwelling of God is with men, and he will live with them. They will be his people, and God himself will be with them and be their God. He will wipe every tear from their eyes. There will be no more death or mourning or crying or pain, for the old order of things has passed away."

He who was seated on the throne said, "I am making everything new!" Then he said, "Write this down, for these words are trustworthy and true."

Revelation 21:1-5

“For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.”
Jeremiah 29:11

Sad News

2007-10-10T21:46:00.000+01:00

Theodore Edward Dungey was born by emergency Cesarean at 3:56am today weighing 6lbs 10oz. Unfortunately, I'm very sorry to say that he had significant respiratory problems and despite the Special Care Baby Unit's best attempts to resuscitate him, he died at about 9:30am. Both Clare and I were there to cuddle him during his last few minutes.

Despite the tragedy of this, Clare and I have spent a very special day with Theodore. Even though he was no longer with us, we found this time comforting and were joined by our close family so they could say their goodbyes.

We feel proud to have known Theodore as our son, even though it was only for a few hours. His life has brought us new friends from across the globe, broadened our horizons and made us into stronger people. He has changed our life forever and we love him very dearly.

Although this is a sad situation, as Christians we know that he has gone to be with his Lord in heaven and look forward to the day when we will meet him there.

I am very sorry to have to break the news to so many friends in this way and I pray that you would find peace in your sadness.

We will be back to give more information in a few days.

All our love
Clare and Andy

Naked I came from my mother's womb, and naked I shall depart. The LORD gave and the LORD has taken away; may the name of the LORD be praised.
Job 1:21

Brothers, we do not want you to be ignorant about those who fall asleep, or to grieve like the rest of men, who have no hope. We believe that Jesus died and rose again and so we believe that God will bring with Jesus those who have fallen asleep in him. According to the Lord's own word, we tell you that we who are still alive, who are left till the coming of the Lord, will certainly not precede those who have fallen asleep. For the Lord himself will come down from heaven, with a loud command, with the voice of the archangel and with the trumpet call of God, and the dead in Christ will rise first. After that, we who are still alive and are left will be caught up together with them in the clouds to meet the Lord in the air. And so we will be with the Lord forever.
1 Thessalonians 4:13-17

Ok, this is getting a bit silly!

2007-10-09T12:06:00.000+01:00

I'm starting to think there isn't actually a baby in there!

The (painful!) examination this morning showed that there was still no progress. Clare is on pessary 3 and it looks like this a repeat of last week's show rather than the next episode. The doctor's are talking about a C-section tomorrow which is really not what we'd planned but we seem to be fast running out of options.

Please pray that something will happen today so that we don't have to have a C-section and also for Clare - she is trying her best to stay on top of things but it's been a long run of disappointments and she's getting to the end of her tether.

If the tension is getting unbearable, tune in next week and maybe we'll have some actual news...otherwise, watch this space!

The latest...

2007-10-08T16:45:00.000+01:00

which is not a lot : ( sorry everyone!

Clare's been in since this morning and she's on pessary number 1. So far, there's not been any progress unfortunately. She is slightly dilated but it looks like breaking her waters is still going to be tricky. I'm off to hospital in a bit, having been at work all day, and they're going to take another look to see if anything's doing then. Clare's mum has been doing the relief shift in my absence so I can try and keep hold of some paternity leave.

Please pray for Clare that things will get started soon as it's quite discouraging at the minute. We would really like to avoid a repeat of last week.

As ever, I'll be back later for more news (if there is any!), but please, don't hold your breath as I don't think it will happen today.

Once again, thanks for all your support!

Induction II: This time the baby's coming out!

2007-10-07T20:24:00.000+01:00

So we're off first thing tomorrow for the second installment of the Induction series. We're hoping it's not going to be a trilogy! The bag has been re-packed and the house re-cleaned. We've re-prayed prayers for health and safety and re-stocked food for Andy. I think we're good to go!

Hopefully things will be more favourable this time. Clare is 40 weeks on Wednesday so he should be nearly brewed by now! Please pray for Clare and Little D that the whole experience will go well and that he will be brought to us safely.

There's a lot of people out there that found the waiting hard last week so we're sorry you've got to go through it all again. We'll try to keep people informed whenever we can, but please be patient if you don't hear for a while. We may not be able to get back to the blog immediately but we'll do what we can.

See you next time with a baby!

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.
Ephesians 3 v 20-21

We're home again...but no baby!

2007-10-03T12:45:00.000+01:00

We waited so long trying to keep him in...now he doesn't want to come out!

In summary, the doctors checked Clare again this morning and found they still couldn't break her waters. We had two options; go home or have a C-Section so we chose option 1. There is no tearing hurry to get him out and he is perfectly happy. We've had a scan and that has come back totally normal with regards to all the important things.

Our consultant at Addenbrookes agrees that there's no point forcing him out and that the main reason for having an induction was to ensure all the necessary people were available if needed. With that in mind, we're booked in again on Monday for "Induction II: This time the baby's coming out!".

We're in surprisingly good spirits, considering Clare has spent 2 days inside and I've spent my life savings on magazines and chocolate! I think the relief of not having a C-section is greater than the disappointment of coming home without a baby. Although that course of action would have put an end to the waiting, the prospect of a 6-week recovery, and potentially subsequent babies having to be born by C-Section as well, makes this seem like the better option.

So everyone can start to breathe again. Sorry for putting you all through it. Thanks for all your prayer and support! Hopefully next week will be more productive.

I leave you with this passage from James. As with lots of parts of the Bible, this is easy to say, but not so easy to put into practice! Nevertheless, we believe that all God's word is true and this is no exception!

"Consider it pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance. Perseverance must finish its work so that you may be mature and complete, not lacking anything. If any of you lacks wisdom, he should ask God, who gives generously to all without finding fault, and it will be given to him. "
James 1 v 2-4

Still nothing!

2007-10-02T23:05:00.000+01:00

This is day 2 of the birthing saga! Clare had a third pessary at about lunch time today (I think... the hours kind of run into each other!) and there's still no result as yet. They wanted to break her waters but conditions weren't favourable so they have put this off.

I've left Clare at the hospital again tonight and the doctors will re-assess things tomorrow. Hopefully, tomorrow will be D-day (literally!) but we'll wait and see.

Please pray for Clare as she is in some discomfort and the whole waiting-game is hard work! Thanks for everyone's continued support!

The latest!

2007-10-01T23:18:00.000+01:00

I know many people are keen to hear the latest news. There's nothing really to report so far... Sorry! We went in this morning and Clare had the first pessary at about 3pm. She's started to feel some discomfort but nothing had really changed by 9pm so I left her having just had her second pessary.

She's staying in overnight and I'll go back in tomorrow to see how things have progressed. It's a slow process!

Thanks for everyone's support. I'll keep you posted when I can!

So this is it!

2007-09-30T21:47:00.000+01:00

Tomorrow, Clare goes into hospital to be induced. We tried most things to get LD out naturally but he 's still in! So, we're looking forward to tomorrow with a mixture of excitement and apprehension. The bag is packed and everything is pretty much sorted so we're feeling really happy that we've finally made it.

Looking back, it's been a long 10 weeks since Clare's fluid level went up and the doctors said that our boy could arrive any day. There's been a lot of hospital visits and plenty of ups and downs during that time. We feel very blessed to have a great family on both sides who have supported us all the way. We also have a huge amount of friends who have shared the journey with us; from church, work, Southwold Beach Mission, and our NCT class, to name but a few.

We have made lots of new friends through this whole experience and many who have found themselves in a similar situation to us. We like to particularly mention Knoah and his mum, whose blog has been an excellent source of information and a comfort to us; and also Kara's mum, Jan, who made everything seem do-able.

Most of all, we have to give the honour to God. Without our faith in him, we firmly believe this would have been much harder to deal with. When you become a Christian, God doesn't promise you an easy life but He does say that He'll be there with you all the way and He'll help you to get through it. This has certainly been our experience.

So a new chapter of our life is about to start and next time I post I will have some lovely pictures of our new son to share with you! Thank you to all those who have faithfully read the blog so far. Stick with us for the next exciting installment.

As is appropriate, the last word goes to God! This is a very well-known part of the Bible, but one that we find to be true and that gives us great hope for the future, whatever that may hold.

Psalm 23

1 The LORD is my shepherd, I shall not be in want.

2 He makes me lie down in green pastures,
he leads me beside quiet waters,

3 he restores my soul.
He guides me in paths of righteousness
for his name's sake.

4 Even though I walk
through the valley of the shadow of death,
I will fear no evil,
for you are with me;
your rod and your staff,
they comfort me.

5 You prepare a table before me
in the presence of my enemies.
You anoint my head with oil;
my cup overflows.

6 Surely goodness and love will follow me
all the days of my life,
and I will dwell in the house of the LORD
forever.

The date is set!

2007-09-18T21:14:00.000+01:00

Yesterday, we went to Ipswich hospital and set the 1st October as the date for Clare's induction! We could have had a slightly earlier date, but we wanted to avoid potentially running into the weekend as there are fewer staff around then. The 1st is a Monday so we've got the whole week to get him out, although hopefully he won't take that long.

So we are feeling very happy at the moment. We finally have an end date which is something to aim for. Ideally, we would like him to appear a bit before that because being induced isn't a barrel of laughs (says he, speaking from experience!). But if all else fails, we have that date set in our minds. It's a good job it's still just under two weeks away because we're still not entirely sorted!

Apologies for the lateness of this posting. The number of enquiries we've had from people shows how much they are thinking about us. We really appreciate your thoughts and prayers!

Of course, the downside (not really!) to this is that in two weeks we start the process of being parents and then the fun really begins!

If you're interested...

2007-09-16T17:52:00.000+01:00

For those wanting to keep themselves informed, a couple of interesting things:

Tonya has recently been contacted by a lady in South Africa whose daughter, Leah, has Achondroplasia. She's posted a You Tube video here about it.

Channel 4 has started a series called "Born to be different" and it concludes on Thurday at 9pm. The first episode was last week and it follows the lives of 6 children who have had various medical issues from birth. One of them is a boy called Hamish with Achondroplasia. The programme was very interesting and certainly helped to put what we're dealing with into context, when compared to other congenital problems.

So tomorrow we are going to Ipswich hospital to set an induction date! Exciting times and we'll let you know how it goes.

Baby face!

2007-09-14T20:57:00.000+01:00

We started the week with a small, overnight expedition to the hospital. Clare had a pain at the top of her tummy so we went to check it out at about 10pm. It wasn't a bad pain, just different to all the other pains she'd felt so we thought it was better to be safe than sorry. Baby's heart was fine but they seemed to be massively over-cautious and kept her in overnight all the same. When the heart rate was good the next day, they let her go. The plus-side to the trip was that she could check out the ward she will stay on if she's induced.

Yesterday marked a significant milestone on Little D's journey... his last scan at Addenbrookes! We had quite a comprehensive scan and the consultant set an induction date of 38 weeks. We are going to Ipswich on Monday to get a definite date but it looks like it may be somewhere around 26th September. We are both very, very excited!

In other news, his legs have grown, though not much over the last few weeks. All his other measurements are good and, although the head is slightly above average, it is still within the normal range. Clare's fluid was slightly down which was also reassuring.

The best bit was another 3D scan the results of which are here...

So the diet will start just as soon as we get him out! I'm not sure how much of a dwarf he is going to be with a face as chubby as that.

Some people might think that he looks like his dad, but I can't see it myself!

Let's just hope he doesn't inherit my hair!

So the clock is ticking and he'll soon be here which is probably a good job because Clare's body is slowly giving up on her, bit by bit. Please remember her in your prayers because tonight her shoulder, tummy, ribs and knees are all giving her trouble.

[if you have trouble remembering...it's like heads and shoulder, knees and toes.
Shoulder, tummy, ribs and knees; ribs and knees.
Shoulder, tummy, ribs and knees; ribs and knees!]

So Thursday was an incredible positive day! We feel very blessed and reassured that God is faithful through good times and bad.

Yet this I call to mind and therefore I have hope: Because of the LORD's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, "The LORD is my portion; therefore I will wait for him." The LORD is good to those whose hope is in him, to the one who seeks him;
Lamentations 3 v21-25

Just one more thing!

2007-09-09T15:01:00.001+01:00

With all the busyness of the last week, I forgot one more element of our hectic week! Yesterday we had our first National Childbirth Trust antenatal class. These are not free like the NHS classes but we certainly found our first one very informative. This was the first of two sessions and covered all topics related to labour and giving birth. Even though we'd read about a lot of the things they covered, it helped the information to sink in a bit more and gave us the opportunity to ask questions.

In terms of delivery, it seems like our birth will be similar to any other. As Achondroplasia typically means that the baby has a bigger head, often a Cesarean section is required because the pelvis is simply not big enough to get the baby's head through. Little D's head is a fairly normally size at the moment and so hopefully a C-section won't be needed.

Although, we have been told that Clare can have any of the normal pain-relief, we are wary of pethidine at the minute because it can slow the baby's heart and breathing slightly. This is no major issue with normal delivery but because his lungs may be a bit smaller and also the CCAM issue, we may decide it's not worth the risk.

So this week's baby schedule is almost as busy as last weeks! Clare is going to a NCT breast-feeding class on Tuesday. We have another scan in Cambridge on Thursday and our final NCT class on Saturday. I think we're looking forward to his arrival mostly because it will give us a bit of a rest!

Blooming big!

2007-09-08T23:09:00.000+01:00

In case you're wondering what a high fluid level actually looks like....

The final installment

2007-09-08T22:50:00.000+01:00

...for this week at least! We went to see our consultant at Addenbrookes yesterday for our weekly session. Clare's fluid was slightly down on last time and seems to have stabilised in the 30 -35cm region. He didn't take any growth measurements today but has confirmed that, assuming Little Dungey doesn't make an early appearance, Clare will be induced at 38 weeks which will be sometime in the week starting 24th September!

His reasoning for this is that LD will be as developed as he can be by that stage and it would be better to control the environment and circumstances surrounding his delivery.

Our consultant now has two weeks off and this may mean that we don't see him in his official capacity again. This was a slightly sad moment for us because we seem to have developed a good relationship with him and have quite a laugh together. He certainly has given us excellent care and we will definitely take the little one back to see him.

We still have weekly scans scheduled but these will be with a different consultant. Clare has seen him once already and he is very good also, so we are not worried about that.

So that date is (nearly) set. Clare and I are getting very excited at the thought of finally meeting our boy. It's been a long time coming but we can see the end in sight. There's just the small matter of labour to get through now!

We're off to see the wizard!

2007-09-04T18:06:00.000+01:00

...well, close... the paediatrician, anyway! He's the one that Jan recommended and was very pleasant, just as she said. He has told us that a paediatric consultant will check over Little D when he emerges and that they will assess what the best course of action is after that.

It seems unlikely that they will test genetically for Achondroplasia straight away. Instead, they will diagnose from what they observe of him, with a genetic appointment later on. From what he said, it seems that although there is an Achondroplasia gene, it can be caused by a number of genetic issues. So finding the A-gene will prove it definitely is Achondroplasia, but not finding it does not necessarily mean that it isn't.

We were hoping for a slightly faster diagnosis than that, but he is more concerned with dealing with the immediate issues after he's born and rightly so. He seems to think baby may not need any specialist care in the first instance, but will be referred to the appropriate medical consultants as necessary. He has also said that, unless there are any issues, Andy Jr may not need to go into the special care baby unit. They will keep an eye on him initially, but then we will be free to go!

As Clare has extra fluid, they will most likely test that all the pipework to his stomach is working correctly, just in case that is why he's not swallowing the fluid. Extra fluid is common in our circumstances, so this is a precautionary measure and unlikely to be the cause of the problem.

So, all in all, we feel we are in safe hands. We are reassured that we're not at red alert just because our son has Achondroplasia and that they feel there may not necessarily be any complications. If there are, however, we have confidence in their ability to diagnose and treat the problem.

Final Stop (well, this week): Addenbrookes on Friday!

So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Matthew 6 v31 - 34

The day today

2007-09-03T19:34:00.000+01:00

The first of this week's many hospital visits was to the obstetrician. It was quite a short one just to touch base and we're going to see him again in two weeks time. Hopefully by then, we will have a better idea of if they are going to induce Clare and when that will be.

We did get a bonus scan out of the visit though (as if we don't have enough already!). Clare's fluid was a bit lower and Little D's head is still where it should be so that's encouraging.

Next stop: Paediatrician tomorrow!

What makes you tick?

2007-09-02T21:03:00.000+01:00

Today, Little D has been more active than ever before! Normally, Clare will say "Come and feel...he's moving about!" but by the time I've got there, he's stopped his wiggling. However, this evening he's been so active that I've been able feel him for ages as he shifts himself around. He seems to respond to noises on the TV and in particular the music of Meatloaf and the Lord of the Rings film... well, I guess there's no accounting for taste!

There is nothing major to report about our appointment this week. He is still growing in his own little way. The measurements were more tricky to take because his head appears to be engaged and our consultant couldn't get a good enough view of his long bones to get a reading. His head and body are doing well so things are looking good for the big delivery. The consultant seems very happy with his progress.

We had a neonatologist in with us to do the measurement and she filmed the whole proceedings for some case study she was doing. My son's debut on the big screen...I'm so proud! Unfortunately, she didn't let us have a copy but I'm going to keep an eye on You Tube just in case!

Clare's fluid was at its highest and she is pretty uncomfortable. The extra fluid is wearing her down a bit and, even though she wants him to stay in for as long as possible, she would quite like him out so she can have her body back!

We also hit a landmark milestone on the 1st of September. Andy Jr will now be the oldest in his year rather than the youngest (which would have been the case if he'd arrived prior to the 1st). Praise God for his many blessings!

This week is a busy one. Obstetrician on Monday; Paediatrician on Tuesday; Pregnancy massage on Wednesday; Addenbrookes on Friday. Please pray for wisdom for the consultants we see and strength for Clare as she rushes around to all these appointments.

Tomorrow and tomorrow and tomorrow...

2007-08-29T20:03:00.000+01:00

...we are going to Addenbrookes for another scan (at least that's what it feels like!). Probably not many more weeks left though and we're getting quite excited!

Clare saw the midwife today and it seems Andy Jr's head is nearly engaged. This is good news! By this stage (34 weeks), most babies are locked into place and can't move too much. However, because his limbs are shorter and there's more room to swim about, there is always a chance he'll be in a awkward position when the waters break and this could mean a tricky delivery. Luckily, this doesn't seem to be the case for him.

Clare's tummy is pretty big now. As a a very rough rule of thumb, your tummy should measure from top to bottom in centimetres the same as you are weeks pregnant. (by that notion, I should be about 26 weeks pregnant as well!). Clare is measuring 40 weeks already!

We also found out today that we've got the same paediatrician as Kara has and he comes highly recommended...Such blessings!

So no doubt I'll be back tomorrow with the latest in the saga. Till then...!

Knoah's Video

2007-08-26T19:45:00.000+01:00

Clare and I are regular readers of Tonya's Blog and she's recently posted a video showing pictures of Knoah. It is a lovely video and can be found here (have some tissues at the ready!)

That was the week that was

2007-08-25T15:47:00.000+01:00

It's been another week of progress and learning! The time is certainly flying by and our boy will be with us before long (what a relief that will be!). So here's what we've been doing...

A visit to see Kara
... well actually Kara's mum, Jan, as Kara was already in bed. Kara is 8, lives near us and has achondroplasia. Jan very kindly put a card through our door after we found out about our boy to say we could come round and talk to her. We spent a lovely evening with her. She filled us in about Kara's life so far, the Restricted Growth Association conference, and generally useful information. Jan has said we can ring her at anytime and we feel very reassured to know that someone has gone ahead of us and can give us advice about what it is like to bring up someone with achondroplasia in the UK.

Hospital Visits
We started at Ipswich at the beginning of the week seeing a different obstetrician who gave us some reassurance about what will happen at the birth. It seems that the labour will be treated as normal (unless anything tricky crops up) but that after the birth, the care will really kick in and baby boy will be seen by a paediatrician straight away. We saw the special care baby unit (again!) and they seem to think that he will inevitably end up in there for at least a few days so they can observe him. Hopefully, he will arrive on time and so won't need to be in there long. If he comes early, he may have a lengthened stay.

We also went to Addenbrookes this week and everything there is progressing well. The consultant seems very happy with how baby is doing. His legs are still growing, although not quite as fast this week. His head may be starting to get a bit bigger now but we will have to see how that develops over the next few weeks. Clare's fluid is slightly up on last week, but not as high as the week before. So, all in all, good news!

Little People, Big World
Mark and Sarah (Clare's brother and sister-in-law) have recorded loads of episodes of Little People, Big World for us and we went round to watch them last night. The series follows the Roloff family: Both parents have dwarfism as does one of their four children. The series is very amusing, mainly due to all the crazy things the kids get up to on the family's massive farm in Oregon. The programs showed a bit of the Little People of America conference, which lasts a week and occurs once a year. It certainly was a fascinating insight and we learnt a lot from it.

Ok, so that's out news! Our boy has stayed in for another week which is really excellent. God continues to bless us as we put our trust in Him.

Psalm 121

1 I lift up my eyes to the hills—
where does my help come from?

2 My help comes from the LORD,
the Maker of heaven and earth.

3 He will not let your foot slip—
he who watches over you will not slumber;

4 indeed, he who watches over Israel
will neither slumber nor sleep.

5 The LORD watches over you—
the LORD is your shade at your right hand;

6 the sun will not harm you by day,
nor the moon by night.

7 The LORD will keep you from all harm—
he will watch over your life;

8 the LORD will watch over your coming and going
both now and forevermore.

A big thank you!

2007-08-21T21:20:00.000+01:00

We've now made our blog address more widely known to friends around the globe and have been overwhelmed by the emails we've got back. So thank you very much to everyone who has made us feel loved and supported! Feel free to comment on this blog site if the mood takes you as well. You can click on the little comment link at the bottom of each post to have your say.

Thanks again!
Andy and Clare

The final countdown....

2007-08-19T15:46:00.000+01:00

Clare's extra fluid means that Andy Jr could turn up anytime between now and the due date of October 10th. This lengthy time-frame makes it tricky to motivate yourself that he could actually arrive tomorrow and therefore you need to be a bit organised about things.

Finally the penny has dropped with us and we're gearing up for the birth! Firstly the nursery's done. In a fitting acknowledgement of my painting and decorating expertise, I had virtually nothing to do with it. Many thanks go to Clare, Fran and Clare's dad, Jon, for the frankly stunning result show here.

(Before we get inundated with nursery decorating requests, I should point out that the cute, little sea-creatures are stickers and not hand-painted!)

Clare has almost put together a bag to take to the hospital...well... she's made a list of what needs to go in it! I think the major sticking point is how to fit in amongst all her stuff the vast amount of food I need for whilst she's in labour.

And most importantly, we have an appointment to see an obstetrician on Tuesday who will go through the whole thing with us, including a session with our paediatrician and (another!) visit to the special care baby unit. The obstetrician we are seeing this time is not the one who caused minor upset/panic last time and comes highly recommended so that has put out minds at ease.

By luck or providence (depending on your belief system), there is a lady in Ipswich who is giving birth to a baby with Achondroplasia this week! We are hoping to squeeze in a visit to her, if that is ok with her.

As if this wasn't enough, we are visiting Kara and also have our regular Addenbrookes session on Friday!

So a very busy time all told. Please think of us rushing around this week. I have to fit a job in somewhere around all this but, more importantly, rushing around increases Clare's fluid so pray that she might find time to rest amongst all this excitement.

Another visit!

2007-08-16T17:53:00.000+01:00

We've just come back from another of our weekly visits to Addenbrookes. It's starting to feel like part of our normal routine now! They were just looking at Clare's fluid levels this time which have gone down again slightly. She's had a quieter week and I think this helps with the fluid/pain levels. We have a growth scan next week so we'll let you know how that progresses.

Our consultant in Cambridge is excellent and very friendly. He's been most accommodating about appointment times because I'm trying to minimise time off work. We feel very blessed to have this level of care. He seems to think that Clare could well go to full-term. He has said he will induce her at about 39 weeks if she makes it that long.

Clare also spoke to a lady called Jan today, who lives very near to us and goes to a local Baptist church. Her daughter, Kara, has Achondroplasia as well and we're going round to see them next week. Kara was delivered at Ipswich hospital so that should give us some more insight into how the whole process works.

So overall, we've had a very positive day! All these things continually convince us that, despite adversity and problems, God is in control of all situations.

And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Romans 8 v28

What's in a name?

2007-08-14T20:08:00.000+01:00

Clare and I were having the usual discussion in response to the question, "So...have you thought of a name yet?" We were going through the list.... Mark*, Jon, William, Arthur...

“Arthur?”, our friends questioned.

“Yes, it might sound a bit old-fashioned, but we rather like it”, was our reply.

“But you can’t call him Arthur…Arthur Dungey….’alf-a dungey…half a dungey!” was the incredulous response.

“Ah… we hadn’t thought about it like that!”

It does beg the question, are we prepared to be parents when we can’t even think of a sensible name?!

* Genuine potential candidates have been omitted to protect people from inadvertently stealing the names we might want to use!

I'm back!

2007-08-12T20:15:00.000+01:00

... although you may be wondering where I've been! Apologies for the lack of posting but Clare and I have spent the last 2 weeks in Southwold doing a Scripture Union Beach Mission there. This is basically a Christian activity camp for kids with lots of fun and mess going on. I was involved with 5-7 year olds, but unfortunately, Clare had to take it easy because she has some extra fluid (more about this in a mo!).

Nevertheless, it has been a great time to gain some perspective and focus on God some more. A huge thanks to the team who have consistently made us feel loved and supported.

During the two weeks, we have had two further scans at Addenbrookes. The highlights of these are:

Clare's amniotic fluid level has gone up. This is to be expected with Achondroplasia, because the baby does not swallow as much of the fluid as he should. Consequently, Clare is much larger and more uncomfortable than before. The increased levels means that he may well arrive early, but we’re hoping to make it to at least early September. (The due date is October 10^th)
Baby's legs are growing! The femur is now about 37mm which is still short (even by dwarf standards!) but on the charts, he is growing at closer to the normal rate.
Head and chest are normal size, with no evidence of frontal bossing
CCAM is probably still present, but diminishing in size as his lungs are growing.
He has hair! And by the looks of it, he’ll have a curly mop, just like his dad!
We now have to go for weekly scans at Addenbrookes

The next major decision is where to have him delivered, Ipswich or Addenbrookes. We were reluctant about Ipswich after our previous encounter and really praying about what the right thing to do was. The way God has blessed us with the people we have met will probably form the basis for a completely different post, but we ran into someone at the mission who had nothing but praise for the way they helped when her twins arrived early. This has put our mind much more at rest about Ipswich. Our next appointment is on Thursday so please think of us as we make more definite plans about that.

As I mentioned, Clare is feeling much more uncomfortable and less mobile because of the extra fluid. The baby’s position seems to give her lots of pain in her ribs. This is coupled with painful hips as well because apparently… (the things you learn!)… these get looser in pregnancy! Clare has found this worse at night. A pillow between her legs seems to help but makes turning over a bit of a mission. Remember her in your prayers!

So, I'm back to regular blogging...keep tuning in!

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."
Jeremiah 29 v11

Useful Video

2007-07-27T08:49:00.000+01:00

In case you aren't an avid reader of Tonya's blog (see the links on the left), here's an informative Video about dwarfism. It's only about 5 minutes long so watch it in your coffee break.

Thanks for Tonya for the link in the first place!

That's my boy!

2007-07-20T20:14:00.001+01:00

After a mixed time at our local hospital on Monday, a trip to Addenbrookes was organised for yesterday. I had a meeting at work which I was reluctant to miss and, after much consideration, Clare and I decided that Clare's parents would take her to the appointment. Monday’s visit had left us a bit confused and trips to Addenbrookes have not always yielded good news in the past so we were looking forward to it with trepid expectation.

Well… I think the results speak for themselves!

Clare had a different (but equally helpful) consultant who suddenly flicked the picture over to a 4D image and there was this little face peering back at Clare. We were very, very happy to see our little lad’s face for the first time. Apparently, he looks like me… I don’t know who that’s more insulting to!

The latest is: His head is still a normal size and not showing any of the expected characteristics, such as frontal bossing, cleft palette, etc. His chest:abdomen ratio has decreased slightly but nothing to cause much concern. His legs are still very short, the femur being just 30mm at 28 weeks! But the limbs are still growing though so that’s good.

The 20 week scan showed signs of a cyst on his lung (called a CCAM). This didn’t seem to be present at the last Addenbrookes scan but was back for this one. The good news is it is getting proportionally smaller as his lungs increase in size. There will be no need for ante-natal care but it will need to be monitored after he is born, just in case.

As far as Clare is concerned, she has a lot of amniotic fluid. This will most likely mean that baby arrives early, though it’s impossible to know quite when. This is a concern because we don’t want him just yet! We’re just trusting in God that His timing will be right.

The increased fluid has left her feeling uncomfortable and she is also experiencing pain in her ribs and back. She still remains positive but some days are easier than others. Today was her last day as a teacher, so I think the well-earned rest will do her a great deal of good.

So all told, we have a lot to praise God for! In the midst of difficult times, He continues to bless us more than we could possibly ask. I’ll finish with His word to us… very apt I think!

For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place.
When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.
Psalm 139 v 13-16

When only the best...

2007-07-18T18:14:00.000+01:00

On Monday, we went for a growth scan in Ipswich, at our local hospital. Up until now, we've been at Addenbrookes which is in Cambridge, about an hours drive from where Clare and I live. Addenbrookes is our region's centre of excellence when it comes to baby things. We've had a very good level of care there and all the people are wonderful!

Because they are considerate people, they suggested that we had an interim scan in Ipswich to save us a drive. This proved to be more hassle than it was worth. Having done the scan, the consultant alarmed us with phrases such as "Obviously, I don't want him to arrive before 32 weeks..."; suggested we arrange a new appointment with Addenbrookes immediately; and then, refused to give us an information about how our boy was actually doing!

*deep sigh*

(It's worth adding that this has been our only bad encounter at this hospital, but it's been enough to put us off going back there for any further scans... I'd rather drive for an hour!)

Anyway, the whole event left Clare feeling very upset, and me absolutely livid! (It's hard to be Christian when you're surrounded by idiots!).

Nevertheless, the outcome is this... Clare has increased amniotic fluid. From what I've read, this is an expected side-effect of carrying a baby with Achondroplasia. Even so, she has been tested for Gestational Diabetes and we will get the results soon. She's also had two steroid injections to mature little man's lungs...just in case he chooses to grace us with his presence a bit early!

As far as I can gather:

His arms and legs are still growing (albeit at the same slower rate as before)
His chest:abdomen ratio is still good (normal is 0.9, lethal dysplasia is 0.5, our boy is 0.86!)
His head has increased in size : ( but seemingly not too dramatically

Unfortunately, I've come to these conclusions by trawling through his notes, plotting graphs, tapping numbers into calculators, etc... so it's still anyone's best guess. It would have been nice to have been told all this, categorically, on Monday but the consultant felt that the results of the scan were not comparable with those in Cambridge ("different operators, different machine")

As a result Clare is going to Addenbrookes tomorrow to get the real story. By the grace of God, she is still feeling positive despite all these setbacks. We will wait and see what tomorrow holds, knowing that whatever comes our way, we believe in a God who is able to help us through it.

"To him who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Amen."
Jude 1 v24-25

New friends

2007-07-09T19:23:00.000+01:00

We've been in email contact a few times with Tonya and Knoah. Their website is a really interesting read for anyone who's just started on the road we have and it contains loads of useful links. They've been lovely to us so I'd just like to thank them for all the support they've given to us already!

Tonya sent us this link the other day which explains a lot about about skeletal dysplasia in babies before they are born. It's definitely worth a read.

The internet is an amazing resource! Never before has so much information been available so readily. When we came back from the hospital after getting the prognosis, we naturally went on the internet to try and get some more information. Tonya's website was one of the first we came across and it was such a relief to see a beaming Knoah reassuring us that everything would be alright!

Just a word of warning when using the internet though... sometimes you can have too much information and this applies whether you are dealing with Achondroplasia or any other illness. The first thing I (mistakenly!) did when reading the link above was to chart our little one's bones on the graph and check the probable diagnosis. If I read the graph correctly (not my strong point!), this meant either Thanatophoric Dysplasia (which is lethal) or Osteogenesis Imperfecta which is brittle bone disease.

Panic! This wasn't what I thought! But then... Reality check... they've already told us they think it's non-lethal and his bones are perfectly formed on the scan (although much too small!). So it can't be either of those then.

The lesson to learn is the internet is useful but it's the doctors who have the best idea... Not Andy armed with Google! Get some background info by all means, but don't go bananas worrying about all the possible outcomes without some solid evidence to back it up!

I'm a Christian, so I'm probably bias, but I think the Bible has some good advice about taking it one step at a time.

"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6 v33-34

Where shall we go on holiday?

2007-06-29T13:01:00.000+01:00

How do you come to terms with something as big as bring a "little person" into the world? As usual, some one has said it better than me....

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Welcome to our blog!

2007-06-29T12:37:00.001+01:00

My name is Andy Dungey and I live in the UK with my wife Clare. We're fairly normal people... I work with computers, Clare is a teacher. We live in a nice house and regular attend our local church. We have lots of lovely family and friends.... Such an idyllic picture!

Here is our baby at 12 weeks....

Isn't he lovely! Life was going totally to plan...until the 20 week scan. There were some unusual issues with him and we were referred to Addenbrookes in Cambridge. The scan revealed that our little boy will have a skeletal displaysia and although they can't be definite until he turns up, it's most likely Achondroplasia.

These are big words for a small problem...literally! Achondroplasia is dwarfism to you and I. They were fairly sure it's non-lethal but there was a cyst in his lung (called a CCAM) to contend with and maybe a club-foot! We would have to wait until the next scan to see how he's doing.

Well that scan has happened this week and, praise God, the little chap is doing really well! The CCAM seems to have disappeared and his chest is growing as it should so they are still saying the condition is non-lethal.

So, why create a blog? We're not after sympathy...it may be less than a month since the first sign that something was not quite right, but we're already coming to terms with the new course of our life. But, naturally when you find out something like this, you turn to the internet to get all the information you can. There's loads of US-based sites about dwarfism (see the top of our links section for an excellent blog in the States), but fewer in the UK.

So this is our purpose... to provide information about dwarfism and how to raise a "little person" in the UK.

We don't know what lies ahead, but we're sure that with God's help we can get through it. And as we find out useful information, we'll post it here so that when the next person gets the diagnosis that will change their life, we can hopefully put to rest some of their fears.

Happy reading!