Gummy Smiles - Our Boy Louie

August 2011

2011-08-27T16:38:00.000+01:00

Schools back, so is nursery! Everyone has settled beautifully, especially Louie. The only down side for the first week back is that Louie's brother has had an upset tummy & had two days off school, his sister has been fighting a cold and Louie (as I write) is completely laid out in the sitting room with an horrendous cold!

The wee soul is absolutely choked! Welcome back to school everyone!!!!!!!!!

(PS – It has been one of the best summer holidays to date! Mum is always right! (See below))

Waiting for Summer Time' - June 2011

2011-08-27T15:12:00.005+01:00

Well, I use the phrase 'Summer Time' loosely! So far we have had one day of Summer – it hit 26 degrees on Friday 3rd June, where Louie adorned his favourite shorts, T-shirt, sun hat & (rather reluctantly) lashings of sun tan cream! The following day on the 4th, Louie wore vest, trousers, thick fleece, padded winter coat & a cagoule on top of that! The temperature dipped to a grizzly 10 degrees, with a wind chill taking it to about 7 degrees!!!

Well OK, so we were daft enough to have gone to the beach, but come on, it's JUNE! Good things come to those who wait – I'll wait!

Louie is now just over 3 & a half years old, continues to be very settled at nursery & is developing quite an attitude at times! His speech is coming along beautifully, with him putting sentences together of great length – 'thank you Mum for dinner', 'sorry Mum for hitting you!'.

He is learning to count from 1 to 10 & regularly counts when he's going up & down stairs. We always know when he reaches the fourth stair as we hear a triumphant 'POR', being yelled out!

He can say his own name now & can recognise various colours without prompting – so we know he's not colour blind! He continues to have good ball skills & is definitely in need of a little basket ball net to perfect his aim & develop this skill further!

One of his targets through nursery is to recognise & complete familiar stories or songs, so his nursery & I are getting stuck into 'Hairy Maclary from Donaldson's Dairy' books – they're just great!

Bottomly Potts all covered in spots, Hercules Morse as big as a horse, Bitzer Malony all skinny & bonny!!! Wonderful!

The rhyming in these will also help towards jolly phonics & learning the sounds of letters. Louie can copy all the sounds of the letters of the alphabet, with the exception of 'c', 'k', & 'v'.

Louie is much better when out & about than he used to be. He will hold my hand much more readily now (even if he does still pull away if he's not in the mood to be holding mummy's hand!) He is starting to build a small awareness of road safety, and will sometimes stand at the kerb in our enclosed street & 'look for cars coming'. Whether he understands why he is looking for cars yet, I'm not so sure!

I continue to encourage Louie to use the toilet throughout the day, as he is still in nappies. His awareness of what's happening 'downstairs' is certainly improving & he is making strong moves in the right direction. Just the one missing piece of the jigsaw – telling Mummy that he needs the toilet – rather than just closing the sitting room door & going very quiet all of a sudden!!!!

Louie has had another good hearing test again giving the all clear, & his annual thyroid blood test was executed nicely, thanks to our lovely local GP Doctor. The results all clear for his thyroid & his antibodies have decreased compared to last years results. So very good news there too.

A summer cold recently washed him out for 2 weeks, with sneezes that could be heard the other side of Scotland! But otherwise Louie's health continues to be fine.

Louie is integrating with a few of the primary school children in the playground when we go to collect his brother & sister from school. This is introducing him to different play – louder, rougher & faster. It's also allowing Louie to see that not all children are nice, sometimes one might throw a stone in your direction when their Mum isn't looking! Needless to say I don't take my eyes off of Louie & I'm ready to dash to his rescue. But I am trying to let him get a wee taste of the bigger world.

He's definitely getting more freedom now as I build my trust in his ability to not completely run off out of sight! That said, if one is mad enough to take Louie into a shop with his brother & sister, then he's gone. Out of sight! Disappeared! Completely!

Take him on his own to Sainsbury's or Tesco, then Louie is in awe of all the food! He runs from the bananas to the apples to the oranges, pointing, exclaiming & being so delighted to see so much food! There are great expressions of excitement, 'WOW!', 'LOOK!', as he takes in what seems to Louie to be such a magnificent sight - much to the delight of the onlooking shoppers!

Louie is a very lucky wee boy. For all he has DS he is doing exceptionally well. His progress is remarkable. However he is still very much younger than his years when compared to other children of his own age, and when he's around these children Louie's delayed rate of development is very noticeable. But if one doesn't mind waiting a little bit longer for 'summer' to come, then I just know it will be one of the best summers ever!

Mum – 10 June 2011

Happy New Year – 2011

2011-01-03T14:14:00.001Z

A wish for health & contentment please………………..that’s all, nothing more!!!

Well, Christmas passed us by! The surreal amount of snow we all experienced put a stop to travelling, & families all over have been unable to meet up. We have yet to have our Christmas with Nanny & Grandad, & Nanny & Grandad have yet to have their Christmas with Louie’s Great Uncle & his family!

Poor health hit like a sledgehammer just before Christmas & kept hammering right up to today! Louie & his sister having another bout of bronchilitis which washed them out & his brother, like us adults, had a cold which seemed to sap all our energy. Finally after 3 days of monitoring the slow appearance of a few spots on Louie’s back, I have today diagnosed Chickenpox!

One has to wonder if this one day of the year really warrants such energy, time, effort, money & built up expectations! And I wonder why I refuse to spend hours sitting writing Christmas cards to you all!!!! I wonder!!!!!

This all said, & my moment of feeling sorry for myself done, it is worth remembering that all this is miniscule compared to some of the things other family, friends & folk are having to deal with around the world.

As the New Year starts we think of ‘you’. We wish you peace & we wish you hope. God Bless.

Nursery Progress

You’ll be delighted to know that Louie’s progress at nursery has come on in massive leaps! My previous Blog entry explained the pain that both Louie (& I) were going through as a result of trying to integrate Louie into nursery. Well, after about 2 months, we’ve done it! Louie will now say goodbye to me at the door of the nursery (massive hugs, lots of kisses & at least two ‘I love yous’!) and potter quite contentedly into the play area.

I am already seeing a build in his confidence & an increase in him attempting various words. I am delighted & extremely proud of him. We did have to go through the pain barrier, with lots of tears, but perseverance paid off. Once Louie was able to understand that I was ‘coming back’, he seemed to be able to settle a bit more with each visit. I think initially he just struggled to cope with my leaving him, but as soon as he saw me returning each time, he became more relaxed. He seems quite happy to walk in with any staff member now, & seems comfortable interacting with the other children.

I am not naïve enough to think that when we go back there won’t be some ‘Monday morning’ feelings to deal with (from me too!) but I am confident that they will be short lived. This all said, with Louie having chickenpox, I doubt he’ll be going back next week!!!

When he does return, he will have 4 mornings a week, Monday to Thursday, 9.30 to 11.30am, with Friday being a ‘Mummy & Son together day’!

And for me, I get a bit of time to catch up on chores & hopefully get a morning to go swimming!

A big thank you to the staff at Louie’s nursery for their patience & support, during a time when I almost gave up!

Mum – 1st January 2011

Louie & Mummy’s First Day at Nursery – 22nd September 2010

2010-09-26T17:53:00.003+01:00

Louie did brilliantly. Initially I think he thought he was off to his usual toddler group, so upon arrival at nursery he seemed a bit peeved! He’s been here a few times now, so it wasn’t an unfamiliar surrounding for him. The nursery manager suggested I just potter around with him for a bit, so we did just that – outside, inside, toys, other children, staff.
After a while Louie seemed happy enough to be tinkering around with bits and pieces on his own, but I was taking myself on a wretched guilt trip.
With Louie being in the same room as other children of his age, the difference in the abilities & development of the other children compared to Louie, hit me hard in the face. And it hit me hard in the face again that this was because of the Down’s. Then I began questioning why I was putting my son with a developmental age of 2+ years, into an environment for children aged 3+. So when the lovely nursery manger commented on how happily Louie was pottering about, and asked if there were any questions, I just said that I was noticing one or two things……….then that was it!
My overwhelmed emotions got the better of me. I was kindly invited into the back kitchen to gather myself, while Louie was left in the more than capable hands of the numerous members of staff.

I felt like I was crying from my very soul. I just wanted to curl up & sob. I just wanted my Mum to hold me; in fact it was all I could do not to say out loud ‘I want my Mum’. Instead I asked the nursery manager for a hug, to which she said ‘of course’, as if it was a perfectly normal thing to ask for. I felt vulnerable, silly, embarrassed, small, yet I was made to feel embraced, understood, un-judged and supported.

I talked very openly about my emotions, the way I was feeling & why I was feeling the way I was. (One of the many things Louie has taught me is that stuffing down my emotions & squashing them to the back of my throat, won’t help him & it certainly won’t help me. I have to open up & that takes strength, I know I am a strong person – I have to be.)

The nursery manager listened & reassured me that for all Louie is developmentally younger, it is absolutely the right time to introduce him to nursery. She also said that nothing was set in stone, & that I am free to do whatever I feel is right. She quite rightly said that the sooner I start integrating Louie into nursery, the easier it will be to do so.

Everything the nursery manager said was right, I agreed with her & in my head I knew I was doing the right thing. It was just that at that moment I was completely unprepared for the emotions that crept up on me – I was prepared for everything else, but not the Down’s Syndrome bit. This sounds daft, but to me Louie is just like every other child. I am almost blind to his condition now, it is part of the family, it doesn’t play a big part in any of our lives – my conscious had forgotten all about it.

Having composed myself & got back into my normal ‘pull yourself together girl’ mode, it suddenly occurred to me that Louie had been quite happy in my absence, in fact perfectly happy, barely phased at all. So why should I be? I’ll take my lead from Louie, I am optimistic that he will settle ok. He may have a few days when he doesn’t want to go in, but then so did his brother – we’ll deal with those when & if they arrive. In the mean time we have a few more nursery sessions over the next 2 weeks before I go away & leave him. It’s up to me to make sure these next few visits are fun & enjoyable & leave Louie with an experience that he will look forward to going back to.

As for me, well I forgot my Girl Guide code didn’t I? Be Prepared! Was I? No! Try harder next time Mummy please!

Fingers crossed.

Mum 24th September 2010

Louie is 3 years old, Happy Birthday!

2010-09-26T17:52:00.001+01:00

More balloons were the order of the day yesterday, along with chocolate birthday cake & an abundance of pressies! Oh yes, & 3 very hyper children, the 2 eldest going into ‘my little brothers birthday’ overdrive!

We had our painter & decorator in the same week as Louie’s birthday, which left me wrapping pressies, stripping walls & moving furniture, all whilst recovering from a 7 week chest infection! Oh, and Louie’s speech therapist popped in to see us too………….that’s along with the usual cooking meals, shopping, making kids lunches, school runs, homework………….and we were in the midst of buying a new car too!!! So Louie’s birthday week was a nice peaceful relaxing one! Ha, Ha!

Anyway, Louie’s old nursery bedroom is now a lovely little boy’s room, with a trucks & diggers theme, handed down from his big brother. His big brother has also had his room painted, now an older boys room, themed with racing cars & lots of blue! Louie’s big sister, so as not to be left out, has a lighter coloured pink room, with ‘Hello Kitty’ being the chosen new style! So for Louie’s birthday he has his new room, a new bookcase for all his books (that were out of his reach at the top of his wardrobe) books, counting number blocks, some Waybuloo & in The Night Garden toys, money and of course, balloons – his favourite!

After the early morning chaos of present opening, breakfast, clearing his sister’s room for painting & the school run, we headed for Louie’s toddler group. Here we met up with my lovely friend who gave Louie more pressies, including a new sleep suit for bedtimes – brilliant, time to move away from his little grow bags & into the traditional pillow & blanket – all change now! I’d bought a birthday cake to share at the toddler group, so after a sing song of happy birthday, Louie pretended to be very shy & needed help blowing out his candles!

Upon returning home at midday, another dear friend popped over with a pressie & card for Louie, so we sat on the hall floor having a good natter……..yes, we do have chairs to sit on, but we kind of gravitated to Louie’s level & got stuck there! After that it was all systems go again to prepare lunch, do lunchbox’ for the eldest two for the next day, start dinner, put Louie’s sister’s room back together & prepare for the school pick up, homework & part 2 (or was it part 3!) of Louie’s birthday!

The kids piled back into the house, lunch box’, back packs, shoes, coats, water bottles, you name it, being flung here, there & everywhere! Louie’s presents that he’d opened were still in the sitting room, so the kids settled in for some serious ‘let’s play with your birthday presents’ time! That kept them quiet, while I finished preparing tacos, mince & salads for dinner, followed by another birthday cake!

With homework executed in miraculous time, with the minimal of battles (amazing what the lure of a gooey chocolate birthday cake can achieve!), we settled down to ‘a party dinner’. Daddy came home from work half way through dinner & I think was quite grateful to have had the opportunity to forgo the ‘chimps tea party’!

A wee post dinner play, and the obligatory watching of ‘In The Night Garden’ for Louie, then it was bath time, story & bed. Three very shattered children, one of whom was still desperately fighting his sleep, wanting to play with birthday balloons some more!

So, our very contented & loving, gorgeous little angel turned 3 years of age – Happy, Happy Birthday Darling, we love you immensely.

Louie’s Progress Update

Louie continues in good health (famous last words with the winter months on the approach!!) His hearing test in the summer proved absolutely fine. He had his thyroid blood check & check for antibodies done too. His thyroid is fine at the moment however there are traces of antibodies in his blood. All this means is that Louie may be at a slightly increased risk of thyroid problems. Should we notice anything out of the ordinary like lethargy or a slow in developmental progress or slowing of weight gain, then we just need to monitor his thyroid bloods to keep any possible problems at bay. A minor blip in a perfect little body!

Breaking news - (very breaking for Mummy!) Louie starts nursery………T-o-m-o-r-r-o-w!!!! Pass me some tissues! No, I’m cool about it, I’m fine, it’ll be ok, absolutely ok, definitely! My wee boy!!!!

Seriously, Louie has matured considerably from 6 months ago, when I couldn’t even leave him at toddler group to go to the toilet, without his bursting into tears. He seems much more settled now. So fingers crossed his transition into nursery will be a smooth one. We have a number of sessions with me accompanying him, then I’ll start to sit into the background a bit. His official start date without me is October 6th. He will only go 2 mornings a week at the moment, so I’ll review this after Christmas, depending on his progress.
So, big steps for our little boy.

I mentioned above that Louie’s Speech & Language Therapist popped in to see us recently. We are working with Louie at the moment to ensure he has all the support & encouragement he needs to develop his words. Our SLT gave me a form to complete to identify all the words & recognised sounds that Louie is using. Well, I’m amazed at how much I’ve written on this form! Louie is coming on in leaps & bounds. He can mimic the end sound of each word he hears, so play becomes ‘ay’, and sleep becomes ‘eep’, for example.

If he’s watching TV, and he’s in a talkative mood, he will try to copy everything he hears. All I can hear is his bubbly chatter, nattering away to himself very proudly – ay, ee, eep, oh, ap, ook, shh, eep etc! He also has a good number of very clear words now, including bye, bye, hiya, ball, balloon, mum, dad, bubble & oast (for toast!) – to name a few. His understanding is getting stronger too. I still have difficulties getting him to hold my hand when I let him out of the buggy! It’s a case of ‘wehey’, ‘freedom’ and off he goes!!! So unfortunately, he often has to go back in the buggy when we’re out & about – absolutely no awareness of safety & roads!

That’ll come in due course, I’m in no rush, Louie will get there when he’s good & ready & not a moment before!

Mum 17th September 2010

Happy New Year - 2010

2010-01-10T16:27:00.007Z

From Louie & all of us, we would like to wish all our family & friends a very happy new year. We hope you will have happiness, health, peace, love & laughter, always. God Bless all.

Catch up for the new year

'Mamma', Dadda', 'hiya', 'ta ta', 'too too' (choo, choo), 'ooee (Louie), 'an (Gran), 'bye bye'.............the same happened last Christmas, with the focus off of routine & with more time to spend relaxing around the house, Louie has been able to focus on some key words...........and he's picked up some new sounds in only a couple of weeks. It helps that Louie is very good at mimicking physical actions; it seems he is equally as good at mimicking sounds & words too. Given that the weather has had us snowed in & unable to safely leave the house, we have had plenty of time to focus on the children, particularly Louie. We've also been feeding the birds daily.......well, I throw out bread into the garden & Louie just as quickly throws the bread into his mouth! But then we stand and watch the birds fly down as I 'sign' birds & keep repeating 'birds' verbally. Louie will now do his version of the sign for 'birds' & say 'B,B'.

Just before Christmas Louie had his first eye test, including those nippy little eye drops. He wasn't phased at all, was very good through the swift process, & the Doctor returned the result of 'absolutely fine eyesight. 'No problems at all'. It was me who was more anxious about it all!

His two yearly hearing test was a mere formality, again Louie passing with flying colours. No sign of any glue ear either.

Our next medical visit will be to get his thyroid blood test again, that will be in March, followed again by his 'Down Syndrome protocol' hearing test in June. We're starting to see the pattern for these test now!

I have Louie down to potentially start nursery in September this year (that'll be a difficult one for me to deal with!!!!! Soppy Mummy!) In the mean time we continue to go twice weekly to a couple of pre-school toddler groups, one of which is designed for children with additional support needs.

So we'll see what the new year holds for us all. God willing we'll have happiness & health, that's all we ask for.

Mum - 1st January 2010

2009-09-27T16:29:00.001+01:00

Nanny & Grandad Celebrate

Congratulations to Nanny & Grandad who are celebrating their 40th Ruby Wedding Anniversary this October. We all send you lots & lots of love & wish you much happiness in all the years to come. xxxx

‘Gummy Smiles is 2 Years Old’ – Happy Birthday Louie

Our little birthday boy had a great 2nd birthday – it all started with several helium balloons scattered in the sitting room for him to notice first thing in the morning! Well, Louie went crackers, he loved them! As did his brother & sister of course! We were so pre-occupied with the balloons we were almost late for school! On Wednesdays, which is the day Louie’s birthday was on, he & I attend his brother & sister’s assembly at their school. At the end of assembly the Headmistress asks who has celebrated a birthday, so that the rest of the school can sing them happy birthday; “That includes Louie” she said over the heads of 200+ school children! So out Louie & I came so that the school could sing him a happy birthday! Louie, of course, thought this was wonderful & lapped up the attention!
As he is now 2, we can register Louie at nursery for when he is 3 years old. So off we went in person to fill out the forms at one of the two chosen potential nurseries. The nursery very kindly invited us in, and there Louie was able to stay & play for a good hour! He got snack & everything! What a birthday treat!
In the evening after a birthday ‘fun food’ dinner, Louie blew out the candles on his chocolate caterpillar cake (with lots of help from big brother & sister!) and we all had a big gooey slice each! With Daddy home, we had present time and lots of excitement as Louie mastered the delicate art of paper ripping……..Again with lots of help from……..you know who! Lots of lovely toys, books & clothes, much to the delight of all 3 of our cherubs! Bedtime followed Louie’s busy day, and a good night’s sleep surrounded by all his balloons!

AND, Louie is now taking steps on his own! What better birthday present could he (and I!) want! Up to 23 steps alone & gaining confidence each day. Louie still chooses to crawl quite a bit, as he knows he can still crawl faster then walk. But each day sees a few more unaided steps & his balance becoming steadier & steadier. Well done to our little birthday boy & a very happy 2nd birthday Sweetheart.

Mum 17th September 2009

2009-06-14T18:25:00.006+01:00

General Catchup – June 2009

At 21 months Louie is still our little star. Vocally he is using lots of 's', t', 'm' sounds and developing those sounds daily. He'll point to a clock or your watch & say 't,t,t,' for 'time', and 's,s,s' for 'snack' time. He is proficient in the use of the sign for 'snack' and he'll let me know if he thinks it's time for a little bite to eat! He recognises the signs for sitting nicely, bathtime, upstairs, no, time to go, breakfast, dinner, lunch, to name but a few. We continue practising letter sounds with the phonics flash cards.

We went swimming this week, only his 2nd time due to winter illnesses & cold weather! Being that bit older he seemed more confident & less clingy. He was more comfortable to let go of me with one arm to splash about in the water. He settled more with the distraction of other mums & dads with their children coming into the pool.

Just this week Louie seems to have 'up'd the anti' a bit! By this I mean that his little character is coming out strongly. As with his brother & sister, it's almost as if someone flicks a switch. I got to the end of the week & thought 'goodness, you've been hard work this week!'. Louie is vocally very forward if he dislikes something or is getting frustrated – a sort of clench your fists, Grrrr, type of vocal!

All of a sudden nappy changes have to be done on the move – 'catch me if you can' - sort of thing! And as for getting into his car seat, or out of his high chair – well if he doesn't want to, I end up with a very rigid, straight baby, who refuses to bend!!!! All of this I went through with his brother & sister, but as I would expect, with Louie we are going through this at a slightly delayed age by comparison.

I think I am going to find Louie's strength a bit of a challenge if he continues to 'wriggle' so. With 3 pregnancies having played havoc with my back, I regularly have to admit defeat – Louie wins another one!

With a lively & VERY LOUD brother & sister, it's no surprise that Louie is getting loud too! Again, something to be managed with lots of appropriate signs – 'too noisy, calm down, shhh!'

Some very positive progress below, which continues to give us all immense hope for Louie's future. Long may it last.

Louie's Heart is Given the All Clear

When Louie was born he had a small gap in one of the valves in his heart. The Doctors wanted to monitor this & as such he was given a hospital appointment at 18 months.

Louie's heart was listened to, then the doctor had a good look with the ultra sound. To our delight the doctor said he was comfortable with Louie's heart & that he didn't need to see him again. There is still a slight gap there, but it is a normal anomaly which could be found in any one of us.

Needless to say tears of joy were shed – after all, the heart is a pretty major thing eh?

Louie's Thyroid Test is Given the All Clear

The thyroid gland produces hormones which keep the body's metabolism functioning properly. An under-active or over-active thyroid means too little or too much of this hormone is being produced. Symptoms can include lethargy, weight gain/loss, hyperactivity, hair loss, voice change, & in children it can impair development of teeth & brain.

All of this is easily treated through daily medicines. It is however vital to catch any thyroid dis-function as soon as possible, hence annual testing for the condition.

Luckily this year, Louie's test proved fine. Well done Louie.

Louie's Hearing Test is Given the All Clear

Twice now we have made the arduous journey to the hearing hospital (nightmare to get to, no parking, long walk to get to the entrance & I think it has rained on both occasions!) The first time, which was a dead end trip, I outlined in the August 2008 entry below. This time with Louie much older, our trip was a definite success.

The ear piece test was used initially, but the technicians decided we still weren't getting very far with this. Apparently most 2 year olds & under, don't like this method. The traditional method was therefore reverted to. This is basically where a noise is made behind the child & a response of some kind is looked for – ie: a flinch, or eye movement, or turning towards, or the touching of the ear or side of head that the noise is coming from.

This turned out to be very successful with Louie responding to all the noises made.
Afterwards the Doctor checked his ears & we were told there was no sign of any glue ear, & that his ear canals seemed to be a good size. This was quite important to know as a child with Down's, can have quite small canals which could lead to glue ear & /or other complications. Louie was just recovering from a heavy cold too, so given that he was still a bit blocked up, the news was all the more encouraging.

Louie will now take his 6 monthly hearing test 'in the community' which means no need to make that trip back to the hearing hospital. Wonderful!

Louie is discharged from the Physiotherapist

At 20 months, Louie is now standing alone for lengths at a time, walking 'miles' (!) using his little trundle toy, cruising absolutely everything he can, (including our legs!) crawling at break neck speed & doing everything a child of his age should be. Our lovely physiotherapist made a very quick visit a few weeks ago, saying 'you don't need us any more!'.

She described Louie as 'an absolutely delightful little boy', who is 'progressing exactly as he should be'.
Another one bites the dust!

* * * * * * * *

Louie's progress & developments are coming in leaps & bounds. I'm still desperate for him to walk, but he is so, so near now. When he just gets that final leap of confidence, he's going to go...........and fast.

As with all children, Louie & his brother & sister, continue to challenge us in both similar & different ways. But oh boy, do we love them all to absolutely bits. Hugely our pride & joy, all 3 of them. Again I say this - a very proud Mum & Dad.

Mummy - 7th June 2009

A Word from Louie..........

Congratulations to my Great Aunt Jaquie & Great Uncle Tom who celebrate their 50th Wedding Anniversary on the 20th of this month in Canada. XXX

Louie - June 2009

For My Wife

2009-02-01T19:06:00.003Z

God Chooses a Mum for a Disabled Child by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen ? Somehow, I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew."

"Forrester, Marjorie; daughter; patron saint, Cecelia."

"Rudledge, Carrie; twins; patron saint... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God ? She's so happy."

"Exactly," smiles God.

"Could I give a handicapped child a mother who does not know laughter ? That would be cruel."

"But has she patience ?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and independance. She'll have to teach the child to live in her world and that's not going to be easy. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness ? Is that a virtue ?"

God nods. "If she can't seperate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Mummy' for the first time, she will be present at a miracle and know it!

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint ?" asks the angel, his pen poised in mid air.

God smiles. " A mirror will suffice."

2009-02-01T18:57:00.002Z

1st February 2009

Catch up for the New Year

Well it won’t be long before we have to buy our Louie some cruising shoes! He is confidently cruising along the settee, working his way around the kitchen table & moving around the kitchen by way of the cupboard door handles! This also means we have had the laborious task of putting cupboard locks on all the kitchen doors! An additional plus to this is that Louie’s brother & sister can no longer raid the cake & snack cupboard!

At 16 months Louie is a very confident (and fast!) crawler, showing very positive signs that independent walking won’t be far away. His brother walked at 14/15 months & his sister at 15/16 months, so Louie is still keeping up with the family pace!

He seems to be a better sleeper these days, (still only gone completely through the night just the once though!) now only waking once or twice & re-settling with water & a cuddle in the cot. Unfortunately he is not keen on cow milk or formula, so we are unable to give him a bottle or cup of milk at bedtime – Time will tell how long I can keep going now the little man has 5 perfect, & very sharp, teeth!

Louie is becoming very vocal with a range of different sounds & songs. There is definitely some understanding with his communications, as post bath I stand at the top of the stairs with him & he ‘calls’ for Daddy to say good night without prompting! At the moment Daddy is a ‘Taa Taa’ sound! Mummy is a definite ‘Muummma’!

His weight is currently 21lb & he is wearing 9 to 12 month clothes. With the clothes size Louie is again at much the same size as his brother. They are very similar in build.
As far as health is concerned, he had 2 weeks of bronchiolitis before Christmas, which meant an emergency trip to hospital to be checked out. Other than the usual run of cold & viral infections, Louie has had nothing out of the ordinary.
He eats exceptionally well & has recently taking a liking to jumbo raisins, particularly if Mummy buys the ones covered in yogurt!!!! (Just a few of these ones!)

Nanny & Grandad bought children’s electric toothbrushes for his brother & sister before Christmas, which Louie took an avid interest in! Like many wee ones, he doesn’t particularly relish tooth brushing time, so I bought an electric one for Louie too! He thinks it’s great! Still refuses to open his mouth sometimes, but he gets a much better clean with the electric brush than the other brush!

We now attend 2 toddler groups each week, which is notably improving Louie’s confidence. He is very interested in other children & seems much happier to move away from me in new environments than he has been of passed.
When we go out, Louie still steals the limelight & shopping seems to take considerably longer as strangers ‘ooh’ & ‘aah’ over him!
As one professional said “he doesn’t have the typical features of a Downs baby”, so maybe people don’t know he has Downs. Maybe they do. Maybe they are not sure. But no one has crossed ‘that fine line’ of looking/staring just yet!

With the turn of the New Year, we now have a plethora of tests coming up – hearing, heart, and thyroid. Fingers crossed all will be well. There are certainly no indications to make us think otherwise.
The little star had his MMR & pneumococcal last week. Not a whimper did he make. What a brave little soul. Very much our little shinning star.

So without doubt our little man continues to be healthy, very content, full of smiles & giggles, incredibly loving and very, very loved.

Mummy 1st February 2009

Happy 1st Birthday To our Louie

2008-09-24T20:02:00.007+01:00

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!

2008-08-31T14:56:00.009+01:00

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

2008-03-18T19:52:00.023Z

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

2008-03-16T18:16:00.021Z

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?

2008-03-11T19:33:00.006Z

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

2008-03-11T19:21:00.011Z

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

2008-03-11T19:20:00.004Z

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

2008-03-11T19:18:00.004Z

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

2008-02-24T19:52:00.005Z

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

2008-01-31T19:42:00.006Z

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

2008-01-21T18:45:00.004Z

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

2008-01-15T20:24:00.003Z

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

2008-01-13T13:59:00.005Z

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?

2008-01-13T13:58:00.003Z

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.