Happy 1st Birthday To our Louie

A very happy birthday to you son. We wish you happiness, peace, contentment and love. We will always be here for you, always and forever. We are very proud of you and we love you dearly. All our love Mummy and Daddy. xxxxxx

September 16th 2008

August 30th 2008 – and our boy is almost a year old!

And how many times have I tried to find the time to update Louie’s Gummy Smiles blog spot? I have lost count! Between moving house, Louie’s brother starting school, his sister starting nursery, sports days, graduation days…………………..it just never ends! So here I am waiting for the rice to cook, grabbing 5 minutes!

Last entry was Louie at 6 ½ months, he is now 11 ½ months & doing us all proud. Since I last wrote, he has cut 2 bottom front teeth, has successfully bounced himself off of his play mat & is now almost on the verge of crawling!

We have been seen by the speech therapist, the physiotherapist, the paediatrician again & been to hospital for a hearing test. So it’s been a nice quiet time for us all!

Louie moved house with no bother at all. He has gone from sleeping in his cot in Mummy & Daddy’s room, to sleeping on his own in his little bedroom. His 2nd night at his new home, he went through the night to 6am for the first time at age 9 months – much to my delight & exhausted relief!

For the build up to moving day & the move itself, Louie was put here, plonked there, pushed somewhere else & carried all over the place, as I cleaned, put up curtains, washed windows, un-packed boxes and everything else associated with a house move. The poor soul had to take his naps in the car as the noise & disruption meant there was no peace for sleeps in either our old or new house! But nap he did, and for good lengths of time too – the move was clearly hard work for Louie as well!

Once we were all settled & Louie’s brother & sister had calmed down from all the excitement of the new house, we had a visit from our speech therapist. She was pleased with Louie’s eating & chewing skills, happy to hear him babbling away & singing, and encouraged by the ‘t,t,t’, sounds he was making. She expressed no concerns at all.

Our physiotherapist was so encouraged by his progress, that she said she would pop back in 6 months time then discharge him!!! The paediatrician continues to be delighted with his general development.

Needless to say we are chuffed to bits to hear all this encouraging news.

Our visit to the hospital for Louie’s hearing test was a bit of a waste of time, but through no ones fault. The type of hearing test performed at Louie’s age, is one where earpieces are put in the ear. The child is then expected to respond to any sound they hear by ‘turning’ towards the noise. They are then rewarded for turning to the noise by a bright flashing light & moving object.

As soon as I saw this I was immediately sceptical. Louie’s development is at Louie’s pace & his reactions to sounds are also at Louie’s pace’ – slower than a typical baby’s pace might be. But I kept quiet while the tests were carried out. At the end the technician was very sensitive & almost apologetic when she said that she didn’t feel Louie was developmentally ready! I agreed immediately, which seemed to take her by surprise! Afterwards you get some time to discuss the results with the Doctor. It wasn’t until the Doctor saw Louie’s child record book with all the Downs Syndrome pages in, that she said that the technician didn’t realise Louie had Down's! It was then I understood why the technician was being so ‘gentle’ with me! The Doctor was reassured that I had no worries at all regarding Louie’s hearing so despite the possible starting of glue ear, we agreed to give Louie some more time before we test again.

Our next challenge is Louie’s heart scan which will be due anytime soon – fingers crossed, this really is the big one. First tests at only a few weeks old were fine, just a small opening which we were told was normal for such young babies. Hopefully this will have closed by now.

Two beautiful teeth are now in full view, which Louie takes great delight in sinking into anything he can sink them in to!! Even his brother & sister have to keep diving out of the way as ‘Chubbula Louie’ makes a move for them!!! As with everything with Louie, he is taking his teething in his stride, with little or no fuss at all.

As for his crawling, well it won’t be long now! For about the last month he has found his upper body strength to lift himself up. His knees are just starting to push up a little now too. He has been getting around by dragging himself along, with a swimming action being made by his legs. If I call him & put my hands out to him, he will immediately get onto his tummy & make a move towards me – lovely!

Louie thinks the tiled kitchen floor is great – he can slide all over the place at break neck speed…………just gets a cold tummy on the tiles in the process!!

Louie is as endearing as ever, full of smiles, noises, & wide loving eyes. He has learnt to tell us when he’s getting a bit too much attention from his brother & sister, who think Louie is just the best ‘toy’ they’ve ever had!

I’m not allowed out of his sight though! He has to know where I am otherwise he starts to get very upset, bless him. Even Daddy gets the cold shoulder sometimes with the ‘I want my Mummy’ cry!

He’s a determined sole – I have to move my PC around the floor as I type, in order to get the keyboard away from him as he follows me around the floor! I am now shuffling into the hall, frantically followed by a determined Louie!!!! I have just bundled him upside down & blown a raspberry on his tummy – much to his sheer delight!

Again, well done to our adoring & loving little Louie – we’re very proud of you Son. We are very proud of all our children.

Mummy, 31st August 2008

The first is that God made it,
The second is that God loves it,
The third is that God keeps it.

JULIAN OF NORWICH (1342 - 1416)

NEWSFLASH

Louie is sitting un-supported for minutes at a time – how proud are we?

Louie is exactly 6 months today & he has gone from strength to strength throughout the day. His sister was sitting at 6 & a half months & his brother at 5 & a half months. Louie’s definitely giving them a run for their money!

We are delighted – that’s our boy!

Mummy – 16^th March 2008

Why Again?

A while ago Daddy was asking himself why we had set up this blog spot – well if we can help others through our own experiences & emotions, like others have helped us, then Louie’s life is even more valuable, special and worth every second.

I know this blog spot has been visited by Mums expecting babies with Downs, & by parents of children with Downs, so we hope that our story will help them too.

Thank you to those who have helped us by sharing their experiences.

Mummy - March 11^th 2008

Wobbly Days

Years ago I was shoved on one of a number of courses at work (much to my then annoyance!). But my goodness, what I learnt has continuously stood me in good stead. One such course introduced me to the following 3 points;

What’s the worse that can happen?

Prepare to accept this.

Now try to improve on it.

How many times have I thought of these 3 points as I ponder the future with our little man?

If I were to believe the books, there is an endless list of things that a baby born with Downs may have, develop, or die of. Some of these have already been ruled out, some have not. Louie may well develop some of these conditions as he grows up. He also may not.

Fact - Louie will look a little bit different…………..and so far, that’s the only fact we have.

Again, if the books are anything to go by, there may be heart problems, thyroid problems, eye problems, lung & respiratory problems, prone to infection, glue ear, obesity, teeth & gum problems, poor muscle tone, dry skin, leukemia, early aging, infertility, behavior & psychological problems, mental disabilities, slow learning skills, hospital trips, doctor appointments…………blah, blah, blah. I write this list with a very cynical tone!

So what is the worse that can happen? I don’t entirely know. But what I do know is that I love our boy so very, very much, that whatever happens, I will deal with it. As Daddy says, I can do this, we can do this.

Have I accepted the fact that Louie has Downs? Possibly, possibly not. More possibly than not, definitely!

Sometimes I will look at Louie & there is still that feeling of sorrow, but not the deep sorrow that was. As I look at him face on, I wouldn’t know he has Downs.

As I look at his profile, the flat back of Louie’s head and his eyes show the classic signs. Just sometimes, my heart aches for him.

What I have accepted is that possibly, in older age, our boy may still be living with us & dependant upon us. Unlike our other two, we may not be able to shove him off when he reaches his 20’s and starts eating us out of house & home! (I jest of course!)

In actual fact, his company as we get older will be nice – and this is one of my first steps of trying to improve on things –looking to the future positively.

It is more probable than not, that Louie will have learning disabilities. Louie’s pace will probably be considerably slower than that of a typical child. He may also have communication problems.

Sometimes this seems hard to accept, when as a 5 month old baby, he is doing everything a typical baby would do. I’m not sure I have this image of the future quite sorted yet – my boy, talking in a disabled way, not being able to make himself understood, possibly having to go to a non-mainstream school to receive extra one to one teaching – Hmmm.

But is this not me preparing to accept the worse? After all, none of this as yet, is fact.

So, am I improving on this?

Well, I am using alphabet flash cards to teach Louie phonics and letter sounds already.

There’s the Makaton signing I have already talked about in ‘Mummy’s Story’ below. We have a daily story time with Louie’s brother & sister. I play children’s songs & audio books throughout the day and I am constantly chattering to Louie about absolutely any old twaddle I can possibly think of

Surely some of this will be slowly sinking in and helping to improve on the communication situation?

I’d like to think so.

Of course I still have my wobbly days. Days when I’m just plain scared of the future. Will Louie cope? Will Louie’s brother & sister cope? Will we cope? Will I cope? How will family who don’t see Louie regularly cope? How will I react when I have my first brush with society – when someone stares at my boy?

How will I find going to places where there are groups of children/adults with Downs or other form of disabilities? It really is a whole new world, and sometimes it’s a bit scary. It’s a whole lot scary really.

I found a toddler group for children with Downs, which I visited when Louie was only about 7 weeks old. I couldn’t have gone if I hadn’t taken a dear friend with me for support though. I was overwhelmed by the range of disabilities the children had. It was difficult looking from Louie at 7 weeks of age to some of the older children, and thinking that could be my boy in a year or so. I met some really lovely Mums at this toddler group – Mums in their 20’s, 30’s & 40’s, Mums who, like me, still have wobbly days too.

I’ve also been introduced to a group nearer to where we live, for pre school children with additional support needs. Louie & I will make our first visit here after the Easter holidays.

I am amazed at how many children & adults there are out here that have Downs. Why don’t I see them when I walk down the road? Why do I only see typical children & adults?

Where do we all hide and why?

I pondered above on how I would react should someone stare at my boy – I might stare back, I might challenge those who stare or I might just burst into tears. But one thing is for sure, Louie has every right to be here. He will not be hidden away. I will not hide away with him. We will walk proud, we will walk tall, we will look back at those who stare; but so help me God if anyone should hurt my boy emotionally or otherwise……………………..

I am fiercely proud of all my children. I am extremely honored to be their Mum. I am humbled by how lucky I am.

Mummy - March 10^th 2008

Mummy’s Poem of Strength

Remember what is most important -

It’s not having everything go right;

It’s facing whatever goes wrong.

It’s not being without fear;

It’s having the determination to go on in spite of it.

Remember that every day ends and brings a new tomorrow.

Love what you do,

Do the best you can,

And remember how much you are loved.

Written by Vickie Worsham, and sent to me by Louie’s Grandad.

Louie’s Progress – To 6 Months

Our little boy continues to amaze us – he is standing up for great lengths of time, he’s always smiling, he rarely cries unless trying to settle himself back to sleep and he’s just starting to get his balance when sitting unsupported. What an amazing little wonder he is.

I started him on solids at five & a half weeks – baby rice, carrot, courgette, potato, pear & apple so far. This all seems to be going down well, with the number of spoonfuls increasing as each day goes by. He now weighs nearly 13lb – below average compared to a typical baby, but well within the guidelines for a baby with Downs. (Babies, children & adults with Downs, tend to be smaller and lighter in weight than typical babies, children & adults)

Louie settles at 7pm after his bath & feed & goes right through to 4am. Then he awakes & quietly rummages around in his cot, signifying to me that it’s time to get the milk bar open!

No crying or demanding to be fed, just politely lets me know he’s ready for a smackeral!

He is babbling away just as any other baby would – lots of Doy Doy Doys & Ba, Ba, Bas!!! Lots of focus from me on practicing Mum, Mum, Mums & Dad, Dad, Dads!

Health wise he’s had his share of the usual coughs & colds and has had 2 courses of antibiotics to clear a persistent chest infection

Aside from his weight being lighter, the only other difference I am noticing compared to Louie’s brother & sister is his upper body strength. Louie’s not yet pushing himself up very far when lying on his tummy. Daddy says that Louie’s brother & sister were more vocal at this age too, so maybe just a few small & currently insignificant differences are starting to show.

What is important though, is that Louie continues to be our very happy, contented & healthy little baby boy.

Mummy - March 10^th 2008

I can do this

I think I am slowly beginning to realise what a challenge we have ahead of us. This isn't going to go away is it? I am not even sure why I am doing this blog as it is so deeply personal that I don't think I should be sharing it. Particularly as I am such a private person.

This is for life.

Tears In Heaven

I can remember quite clearly the point when I realised that Louie was going to remain part of the family.

I love my music and often listen to it when working in the kitchen. I also love my food!

My laptop scrolls through my tunes and came to a song written by Eric Clapton about his son after he died. The words hit me and I realised that I had a responsibility beyond anything I had ever been given before.

I have a faith, maybe not as strong as others but it is there none the less. In a strange way adversity does strengthen it. I could say why has God done this to us, but then again, why not?

Anyway, why should God have done it, is it not just nature? I don't know and neither do much cleverer people than me.

In many ways I now pity those people that have the 'perfect' life, they will never truly appreciate what they have. We do and we are grateful.

Mummy's Story

First & Foremost

We have an amazing & gorgeous new addition to our family. Louie is our much wanted 3^rd baby. We absolutely adore him, love him, and, like all our children, will do anything for him. Louie is our ‘angel’, our own little angel.

My Pregnancy

Like most pregnancies, the 9 months were hard work – and that’s before you include our two lively toddlers to look after as well!

For the first 3 months I was plagued with ill health, which took its toll on all the family. However, after several doctor visits, a couple of courses of antibiotics and the onset of spring, I soon recovered. By the time I was 6 months I already felt like a beached whale, even though friends & family kept telling me I was neat!

We had a scan & nuchal measurement earlier on in the pregnancy, to determine the risk of Downs. This returned a risk of a 1:249 chance. We opted to have another test done with another consultant, & this test returned a result or 1:2,700 chance. We were re-assured & decided not to opt for an amniocentesis.

My pregnancy continued, so did the tiredness & morning sickness, and so did the boundless energy levels or our 2 children. I quietly gave myself a gold star for getting through the summer holidays with them and the pregnancy!

My Mum visited from England to help out early September, and on the morning of her departure back home, I humbly asked if she could stay a bit longer…………I had begun labour – two weeks early!

The Labour

Having already had 2 children, I was under the misapprehension that labour got easier & quicker. BIG misapprehension! Our first born took 9 hours, our second 13 hours and this one took 34 hours! I prided myself in not having any pain relief first time round, only gas and air second time, and was determined to deliver just as naturally third time round. With two successful water births under my hat, this was to be my third – or not!

1am Saturday morning, I awoke with those all too familiar twinges. I cat napped through the rest of the night, then threw myself into the riotous breakfast routine with the kids. Remembering that one is supposed to ‘help the labour along’, Mum & I togged the kids up & off we all went for a walk. Lunch came & went. Dinner came & went. Boredom came & stayed! Impatiently I rang the hospital at 8pm and was advised to come in. As it was my third pregnancy, the midwife was also under the misapprehension that this baby was going to pop out quickly!

By 4am Sunday morning we were exhausted, & frustrated by the lack of progress. I opted to have my waters broken. The result of this sent my contractions crashing through the pain barrier & my ability to cope with them deteriorated rapidly. I tried the water pool again, I tried gas & air, I ‘pulled myself together’ & gave myself a talking too – ‘I can do this, I can do this’.

I couldn’t. I was too tired. I was lifeless. Reluctantly I asked for an epidural.

What a superb idea this was, because by 7am I was a different person. Despite the lack of sleep, I was positively comfy watching my body deal with each contraction – painlessly & effortlessly! It was my poor husband who looked completely pooped, propped up in the corner of the delivery suite, with matchsticks propping open each eyelid!

Shortly after this, two white coated Doctors arrived, & told me that I had half an hour to push this baby out, or else a selection of various apparatus would be used to ‘do’ the extracting for me. Absolutely-not-no-way-ever-not-on your-nelly!! This baby was coming out now……….P-U-S-H!!!!

The Diagnosis

Our little boy arrived within that half an hour, good apgar scores, good colour & feeding straight away. We were bowled over with love, delighted, amazed, relieved. We felt very proud.

After a period of recovery, my husband left us to go back home for some essentials, this was when I noticed my boy had Downs.

About five hours after Louie was born, I looked at his profile & thought, ‘I know that look’.

I hugged my boy closely & told him it didn’t matter. I told him I loved him very much. I told him he was all mine. I didn’t cry, there was no emotion, It didn’t matter. Louie was my boy. Childishly, I was feeling cocky that ‘I’ was the one to have picked up on this, none of the professionals.

I mentioned to the midwife that Louie had a ‘Downs’ look about him and she kindly brushed it off. Ten minutes later two Doctors arrived, followed by my husband returning from home. The midwife re-assured my husband that the Doctors were just ‘following up’ my comment regarding Downs. I looked at my husband, he looked at me. I could already see apprehension in his eyes. The Doctor confirmed that there were some ‘soft markers’ to indicate Downs, but that she couldn’t be 100% sure. A blood test would need to be taken.

The Doctors went away & my husband & I were left alone with our little Louie.

It was at this point the emotions started to set in. The most prominent one at that time was a deep, deep sorrow.

The next Few Weeks

A whirl wind of hospital appointments - blood tests - heart checks - thyroid checks – consultants – counselors – paperwork - phone calls. Our emotions where volatile, dark, heavy, lost. Our family became dysfunctional. Our children knew something wasn’t quite right. Family & friends were lost for words.

We were all grieving. Grieving for a baby we didn’t have, grieving for this beautiful baby we did, grieving for what we had lost, and for what we never had. We were grieving for each other. Our hearts ached with sorrow. What had we done? This innocent, perfect little baby, what had we done to him? Why couldn’t we fix it? Why couldn’t we take it away? Why couldn’t we throw money at the problem? Why couldn’t an operation remove it? Why us? Why our boy?

We felt suffocated by this immense darkness that enveloped us. A dark tunnel, no light to the front, no light to the back, we couldn’t move, couldn’t think. All I could do was cry. There was a chink of light in this tunnel, a door, an option, a way out – adoption?

There was never any way we could ever have given our Louie up for adoption. But right then, at that time, we needed to know that there was a door that we could open if we needed……………

Week 6 of Our Boy Louie’s life.

We were told that we would soon accept that Louie had Downs Syndrome, and would be able to move on with life. However, during those first 5 weeks this didn’t seem believable. But sure enough, as fast as those emotions had arrived, they left even faster. Each day allowed us to ‘process’ another feeling, to work it through. Each day bought some answers, but also bought some questions. We had good days, we had bad days. We took two steps forward, we fell one back. But each day we got stronger and stronger. It was as though we had to go through this. It was a test of our love – both for our boy, and for each other.

From the 6^th week of Louie’s life, the cloud lifted, a rainbow appeared, the sun shone, and we smiled – and so did Louie – his first little grin started to curl up at each side of his perfect little mouth – ‘Our Gummy Smiles’.

Our Challenge

So, our boy has Downs. So what? He may look a little bit different, he may take a little bit longer to learn new things. But he is still a person. He is still a boy. He will still grow into a fine young man. He still has a future & a life. Take off the label, see our baby, see our boy, watch him grow, watch him achieve. Watch Louie love & be loved.

His brother & sister adore him and are incredibly affectionate towards Louie. They know Louie has Downs & understand Louie will achieve at Louie’s pace. They have called the syndrome ‘Little’ syndrome.

We may have to deal with various issues throughout Louie’s life – health, society, education, communication, employment, accommodation – but isn’t that the same of any child?

We will work hard with Louie, together as a family. We will support, encourage, learn new skills ourselves, walk down different roads & make many new friends. Sometimes the roads will be easy to walk, sometimes it will be like trying to run on sand. But we will get there, we can do this, we will do this…………..and then some.

Louie’s Progress – 4 Months Old

So far we have been very lucky with Louie’s health. A slight heart murmur, but nothing the Doctors are worried about. This should mend itself over the next few months.

Louie’s muscle tone seems fine. At 4 months he can lift and hold his head for long periods of time whilst laying on his tummy. He supports his head perfectly while being carried in an upright position. He can sit up while supported by his hands and lift his head to make eye contact. He can stand, putting all his weight on his legs, whilst only being supported so not to topple over. In fact his leg strength seems more developed than his brother or sister’s at 4 months! And he’ll happily stand like this for minutes at a time, whilst cooing & smiling – a sort of ‘look at me’ expression!

Louie can go between one and a half to two and a half hours between naps, and sleeps a 10 hour stretch at night. He is a very contented, peaceful baby, who only starts to cry when tired. In fact his brother & sister cry more than Louie! (They are at that love/hate each other stage!)

Louie responds well to sounds & will follow a toy with his eyes, in a complete circle. He adores his daily bath before bedtime – definitely a fish in disguise!

I work Louie hard with twice daily (at least) sets of exercises. These help develop & strengthen his muscles and explore all his senses, whilst allowing fun one to one time with me. That is until his brother & sister come to join in too!

I’m learning numerous Makaton signs (sign language) just in case Louie’s ability to communicate is hindered in any way. Our other 2 cherubs have also latched on to a number of these signs, which creates a great opportunity to break through the noise barrier to get myself ‘heard’! In fact we are very impressed with how well they have picked up some signs.

Of course Louie is too young to fully understand the signs yet, but he watches with interest as I go through a few hand actions at the appropriate time – bath time, toilet, drink, play time, clever boy, good boy, to sleep, more, etc.

Louie’s had a few colds and an eye infection, but so far nothing too untoward. Fingers being kept very crossed.

I’ll keep you all posted as our lovely boy develops.

Mummy 18^th January 2008

Daddy's Story 2

I say the dream fell apart but maybe I should say the dream changed.

We were in a state of shock, probably like all parents that get news like this are. This wasn't happening to us. There must be some mistake.

We were given the lifeline of more tests but we knew already. We started to see the signs but hoped we were mistaken.

That's all history now. We had to decide how to deal with the cards life had dealt us and we started to think of the future.

Adoption...

We spoke to the social services and looked at the options. Could we bring up a 'disabled' child in a family with 2 other children? What pressures would it put on our marriage? What about OUR dreams?

Finally we decided there was no way we could let OUR boy be brought up by strangers. He was our child, God given, and we would look after him. How right a decision that seems now.

He is our Gummy, our responsibility, our child.

We have challenges to face and maybe we are still in denial about what the future holds. But we will face it together, as a family. To hell with the rest of world!

Daddy's Story

Louie was born September 2007 into a family that already included a 2 year and a 3 year old. Both of whom seem to spend most of their days trying to kill each other!

He was to be our 3rd perfect child and would complete our little family. My wife and I had always wanted several children and 3 was the number we would be happy with with. And we are.

But things didn't quite go to plan. Early on we had concerns about the risks. Tests suggested there was a high chance of DS but we simply chose to ignore them, got more tests done which indicated otherwise, and believed the results we wanted.

Seven months later Louie was born, early and after a long labour for my wife. I saw nothing, except another baby in the family. My wife now says she had concerns from the beginning but I was too tired to see anything.

I went home for some sleep, oblivious, and told all the family about the beautiful addition to the family. It was when I returned to the hospital a few hours later that the dream fell apart.

Why?

I'm not sure why. Maybe it will help me, maybe it will help others. I just feel that if I share my feelings with others, feelings of love, feelings of joy, of disappointment, of worry and of pride, then I may gain strength.

Even if not, at least I might show that all children, regardless of the challenges they face, have potential and should not be labeled.

But most of all it is about my son. My beautiful boy that I almost gave up on and who shames me every time he smiles at me.