Showing posts with label NF1. Show all posts
Showing posts with label NF1. Show all posts

Tuesday, 23 August 2011

10 ways to stress less while your husband is having an MRI

My husband is off having an Brain MRI right now , hopefully as we speak.

He had a follow up appointment with the Radiation Oncologist at Cancer care centre , all seems good. A huge relief .

Then he saw a Neurologist because of the the ongoing headaches. They decided they would do another MRI just to rule out anything, it's been 11 months and 1 weeks since his last one.

It was supposed to be 3 weeks ago but 15 mins after they booked the scan (7pm the same day after the appointments) by the time he had walked up to give/receive informative the machine had broken down.
They think it is more likely stress, and they told him to adjust his medications too.

I am not stressing. 


Last week , when Sam had his annual Neurofibromatosis  [NF1] review at the Children's hospital clinic . We saw the Specialist not just a registrar . She decided Sam needs a brain MRI too. Again just to rule out anything causing his vision changes.

The eye appointment 3 weeks ago shows his eyesight is slightly worse in left eye. The eye they can't see the optic nerve in because of the myelinated nerve fibres covering the disc.

In children his age they give them a trial mock MRI first to see if they will cooperate and lie still enough without a general anaesthetic. When I mentioned we were going away for 2 months in 3 weeks, she said let's try to get it done before you go...have n't heard yet.

If he can have it done without a GA the wait will not be as long. I am not stressing ... !

How do I stress less ?




(Just what I am doing)

I said to myself "I can manage at least a few of these every day" ...

He just called and is on his way home.
How do you cope with stress ?

Edited to Link up with Sif @ At the bottom of the garden's 10 things on Tuesday.
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Wednesday, 3 August 2011

Wordless Wednesday Jeans for Genes

Aussie Not so Wordless Wednesday for a good cause


This brings back a few memories ...

Drummer boys @13 months in Daddy's jeans

5yrs 1month - Jeans for Genes



  • “Patch Your Jeans” Facebook App: Create your own denim patch using the ‘Patch Your Jeans’ app and share it . I attached our own patch above!  To check out the app, visit the Jeans for Genes Facebook page (www.facebook.com/jeansforgenes).
  • Become a Fundraising Genie: Organise a fundraising activity at your home, office, school or community on Jeans for Genes Day.  It could be as simple as asking your group to wear jeans on Jeans for Genes Day and make a donation.  To get a free Genie Kit, visit the website to register: https://www.jeansforgenes.org.au/consignment-landing.aspx
  • Wear Denim on 5 August and Share Your Pic: Remember to wear denim on 5 August, share it on Facebook and tag Jeans for Genes in the photo so it can be shared with supporters of the campaign!

If you’d like more information about Jeans for Genes Day or CMRI, please visit the CMRI Web site at www.jeansforgenes.org.au.

Jeans for Genes day ... it means more to us because Sam has a genetically inherited disease Neurofibromatosis 1. So do I and other members of my extended family.

It is extremely variable - and there is so much more unknown but we live pretty normal lives albeit with more medical appointments and treatments/surgery when things come up.








Ps My Canon camera battery is flat and charger awol so I had to instagram these.
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Thursday, 14 July 2011

Something new ~ Hair

I few weeks ago I was invited to THE Barney Martin's  hair salon in Surry Hills courtesy of P & G to colour my own hair . 



I have darkish brown hair and fortunately very few grey hairs*.


I have to confess that I haven't ever coloured my hair...never apart from a few foaming highlights.


Having had long hair for most of my adult life I haven't spend much time or money on my hair.

My career was in Nursing, in a Children's ward so I always wore my hair tied back and up in a pony tail. It was simple and quick to manage. NO style no worries.

Very occasionally I wore my hair down or styled when we went out.I just never worried  too much about it.
I rarely wore makeup either I preferred to go 'ugly' naturally.

I am far from 'attractive' due to many complicated reasons I won't go into here, mostly a genetic disease NF1 and my eyes. Hair and makeup have been the least of my day to day concerns.

However, as I 'age' with young sons, I am now more self - conscious because I do not want to be called their grandmother when they start school. As an older mother I want to look my best and take care of what I have left.

I am just too much of a scrooge to spend money on my vanity. I do feel more self conscious now more than ever as NF1 is causing an increasing number of small but highly visible lumps over my face (& everywhere).

I really try not to let it bother me because beauty is only skin deep.


Anyway, I digress. I decided to bite the bullet and try a new hair colour - medium golden brown. I wanted to feel better about myself because I've been feeling down. 

At the P & G event I was given the opportunity to colour my own hair with the Clairol Nice ‘n Easy Colour Blend Foam (rrp $17.99). Amidst several other fabulous 'style' bloggers also receiving Nice ‘n Easy Colour HAIR makeovers or for some just a pampering hair wash and salon blow dry & style , I felt very insignificant (- like why was I invited). 

I was pleased to hear my hair was in very good condition.

...So on with it - we started the colouring process ourselves - it was incredibly simple : Just pour bottle 1 into bottle 2, tilt the bottle gently up and down 3 times , then gently squeeze the bottle onto your hand and apply the no-drip foam to your hair. Long hair needs a little sectioning I learned.

I realised it was something I could probably do myself at home with a successful result. It's very affordable too. Though my stylist helped me finish up as the salon chair was not as easy at the bathroom at home. There was little mess and I only slopped a little foam onto my face.

The foam was left for about 10 mins then rinsed out by the stylist . I felt very pampered because it included a divine scalp massage. Followed up with a blow-dry and professional style experience. It was quite a treat for me as I only get my hair cut about 2-3 times a year ; rarely salon shampooed and styled.
 

The P & G event included the promotion of Pantene Pro-V Nature Fusion Shampoo & Conditioner . A new formula enriched with ingredients uniquely derived from Cassia seeds (One hundred crushed Cassia seeds in every bottle).

I loved the smell. Nature Fusion is specially designed to promote hair fullness and shine with scientifically naturally derived ingredients. It's suitable for most hair types. My husband likes it too.

I've been using it for 4 weeks and I love the way it makes my hair feel. It deeply conditions my hair and I've noticed less breakage. I love my new colour, though most people didn't notice a difference.

We were also shown the new Wella Pro Series {at home} Collection , they used these products {mousse & hair spray} to style our hair.

Inspired by stylists and developed by WELLA experts, closest to salon smooth hair in retail at an affordable price
I got to try the Pro Series mousse and Hair spray at home .They have a whole range in the collection.I look forward to trying their Shampoo and Conditioner range (It's available in a pump pack ...my favourite). All are available in supermarkets and/or Pharmacies.

Click the links below to read some of the other fun and informative posts for P & G Hair day.

Procter&Gamble certainly do everything in style. They even flew down Kelly & Nikki from Brisbane for the day.



Kelly has some great tips for busy mums.There are some great hair care tips on the Wella site too.

This is not a sponsored post though I was by invited Procter & Gamble and their PR to attend, I had no obligation to write this post; all opinions expressed are my own.
  
Professional Photos Credit - Georgina Morrison

PS: I only posted my pics so people who I haven't met , yet, will know who I am when I attend the Blogger's Brunch & Nuffnang Blogopolis.

* I did have a scary dream the other night I woke up with all grey hair growing out.


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Tuesday, 12 July 2011

JulEYE and your child's sight

As you know my five year old,Sam, has worn prescription glasses since he was 20 months old.


We didn't detect a problem ourselves apart from the white eye reflection which I picked up in my photos when he was 11 months old. I was terrified *.

Sam has a genetic disease "Neurofibromatosis 1" - which can result in an optic glioma, his eyes were being already being checked (initially every 3-4 months) to detect them early if they occurred.

Fortunately while he hasn't had an Optic glioma , he does have myelinated retinal nerve fibres plus myopia (causing nearsightedness).
I still get photos with a white eye reflection - potentially a serious symptom of some eye diseases.

I know what Sam's is - myelinated retinal nerve fibres plus myopia - white fibres cover his lens. It has affected his vision though wearing glasses helps corrects this. I just hope he doesn't end up with a turned eye ('cross eyes' -like me) because when a child has vision issues that go undetected it can cause the brain to switch off that eye (like lazy eye).

It was only on subsequent visits they found he was longsighted in his other eye. I am glad we were having his eyes checked. Sam may still need a patch for one eye to strengthen his weaker eye.

When I received an email asking me to mention about JulEYE I immediately had to share it.

Why ?
Every 65 minutes, an Australian loses part or all of their vision – this may explain why one third of Australians list blindness as their most feared health condition alongside cancer. Yet the majority of Australians do not get their eyes tested regularly, despite the fact that 75% of vision loss is preventable or treatable. The Eye Foundation, a not-for-profit organisation, is once again encouraging all Australians to get their eyes tested in July as part of its annual ‘JulEYE’ campaign kicking off on July 1.


Each week of ‘JulEYE’ will focus on a different aspect of eye health. The third week will be focused on children’s eye health and encouraging parents to have their children’s eyes tested and be aware that vision problems are not exclusive to the elderly only and can affect babies and young children. 

As a mother,  who has faced such issues I wanted to share this.I am aware that is quite widespread in Australia.



Undetected vision problems are estimated to affect one in four Australian children. Parents need to be aware of the importance of children’s eye health and that regular eye checks are just as important to a young child’s overall health and wellbeing as other regular health checks, therefore, good eye health beginswith testing from birth. 

The Eye Foundation is asking all Australians - no matter their age - to get their eyes tested this julEYE, and place eye tests every two years on their family’s calendar of regular medical checks. 

AS parents we need to protect our children’s vision



Kirk Pengilly is the ambassador for ‘JulEYE’, as well Australian country artist, Lorin Nicholson and many other young, inspirational Australians currently battling eye disease.

The eye foundation would love others to mention this and help spread the word about this great cause!



For more information or to link to the Eye Foundation website please go to www.eyefoundation.org.au


They are also getting social this year so you can:

•   Follow on Twitter- @EyeFoundation;
•   Like on Facebook-  The-Eye-Foundation FaceBook Page; and
•   Chat to them on their blog- EyeSiteBlog.com
*Everyone please note - white eye reflection is not normal and you should get a referral to an Opthamologist asap if you see it in your photos. It could be life threathening if left unchecked. 
 
PPS I can't stress enough how important sight is. I am almost blind in one eye for a completely different reason (head injury as a child at school with undiagnosed partially detached retina).I have peripheral vision but a huge blind spot in my central vision.

This is a non sponsored community announcement - because it is so important to me.
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Tuesday, 10 November 2009

Sticks and stones

I had already planned to write on bullying sometime during November, tonight I realised I missed the SBS program on Bullying. It's been on my mind.

Tonight at Little athletics a 4 yr kid was calling Sam, who wears glasses , glasses boy ! I didn't worry too much and Sam didn't even notice, but I did ! I wanted to cry for him. It's starting. I can't bear the thought that he will be a victim of bullying ...not just because of his glasses.

As a consequence of having NF1 (neurofibromatosis) though I didn't know it was called NF then , I 'suffered' bullying all through my school life.

I learned to live and deal with it. I can't even tell you the names they called me, oh I remember a few of them, I just don't want to tell you.

The birthmarks known as Cafe au lait are flat milky coffee irregular shaped 'spots'.They were the main reason. I had a large one down my left arm and numerous other ones large than 50 c piece and spotty freckling.

In primary school it was mainly name calling and sometimes a little physical abuse, hair pulling, chasing (fearful not playful) and spitting and like Rudolph they never let me play their games. Exclusion from play didn't hurt me but it scarred me emotionally. I was smart and I relished working hard to gain the academic awards to soothe my self esteem.

When I was 10, I had to wear glasses and this gave them another reason to taunt me. I also had a turn in my eye, I was 'cross eyed'.

This was due to an accident at school when I was 8. I suffered a head injury , and a black eye when a bigger child knocked me over. This was an accident I remember it. Part of my retina detached and it wasn't detected.I am technically blind in my right eye with very slight peripheral vision. My eye still has a noticeable turn despite surgery to cosmetically 'straighten' it at 16 & 21.

I had a few friends over my primary years, the one main one lived across the road from school and she went home for lunch every day. We lost touch when we went to different high schools. We were both quite intelligent too.She had the additional trait of being 'bossy' so she had her own dramas with other kids. It wasn't an easy friendship ;).

I was always in the last couple of kids when it came to picking teams and I was just glad I had an excuse not to do school swimming...thank God for ear infections. Crazy but true!

In high school most of the same bullies went there too. The girls were bitches and merciless.So were the boys. I just had a thick 'ugly' skin.Thankfully, by the middle of yr7 I found a group of friends. There were 5 of us in our posse. I am still very good friends with 2 of them today; 30 years of wonderful friendship.

I still decided not to attend my yr 10 formal and my yr12.

My posse of friends all left school in yr10. We were all around 16yrs. It was a very lonely 2 yrs as I finished my HSC (higher school certificate). I was once again excluded and alone. I was laughed at behind my back, and I could tell they didn't like me in their 'group' projects etc. but it wasn't physical by my mid teens. I ignored it.

What else could I do, I was always on the fringes. I went home for lunch, often, though it took me 10 mins to run home, 5 mins to make & scoff a sandwich and then 10 mins to run back. Rather this, than be alone and seen to be alone.

I lived for the weekends when I had my old 'school' friends again and a new friend I made, L. I met L when we were both on our family holidays. We were both 16, she was turning 17 in 2 wks and got her drivers licence. She invited me to try a new church , I became a Christian and I saw things in a new light. I didn't feel so damaged. I made new friends outside school. So school , for me , was a place just for education.

L was my transport everywhere, youth groups, church and social outings. L is still a good friend but sadly she lives 2-3 hrs away and busy with her young family. Once we were housemates for a year and she was my bridesmaid.

L, K & W looked beyond my imperfections and I am so thankful for all my friends they saved from from despair. Still I wasn't diagnosed with neurofibromatosis till I was 22 . I just thought I had terrible excess of birthmarks.

I worry now for Sam and his cafe au lait spots. Will they both get taunted because of me and the way I look ? I have more bumps and lumps coming up everywhere. I hate it. I have always worked harder to fit into groups I still feel the stares.

I worry will Sam be strong enough to deal and cope with bullies ?

I am so thankful his twin will at least be by his side, so he won't be lonely in the playground, so he will have someone to back him up, maybe help him protect himself and to pick him for his team. They have each other. Already I can see Joel has a protective nature and is looking after Sam. I can only hope...

♥

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Thursday, 13 August 2009

Shades of Black

I have been desparately looking for the light...at the end of tunnel (I was told due to the GFC they have switched it off )

Lately , I find it hard to know what to write about. I have so many things I am juggling and many I can't blog about or don't want to. I don't like to put my fears in writing least they come back to haunt and taunt me.

I feel very anxious about my Neurofibromatosis and I don't know what to do. I read inspiring stories like this fellow and also Reggie Bibbs.(I am not affected by facial tumours in this way) I want to cheer their strength and tenacity for thriving and living life to the full, at the same time as I'm feeling depressed about the future.

I feel a lot of guilt.

I recently read Jodi Picoult's 'Second Glance' ... one of the themes in the book was about genetics. It briefly, in fiction (but definitely with supporting factual information) detailed how at various times in history people have been sterilised against their will (or murdered) for the purposes of 'wiping problematic citizens from the population'. Eugenics.

Nazi eugenics or racial hygiene was practiced by Hitler and even today genocide is common place in some countries, purely racially motivated.

Preimplantation genetic diagnosis was also mentioned in the context of parents chosing embryos so that they are unaffected by genetic diseases or of a sex that cannot pass on inherited diseases. The ethics of it all both scares me and encourages me. I honestly don't know how I would feel if I had to make these decisions.

I would give anything not to have NF in my family but at the same time what would the world be like if we were all perfect. So many of us are different and do not fit in because in the eyes of the world we are less attractive. Beauty (and body perfection) is foremost, a quality that makes the world revolve, billions of $ are spent on attaining beauty and the celebration of it .

Billion$ more on counselling for those who feel they fall short of the mark. Others starve themselves thin or undergo surgery to correct imperfections.

Does having imperfections or disabilities make us less valuable or less likely to be loved?

What if society comes to the point that we disregard every baby not born perfect or wipe them all out while they are but a few cells...or later on. I have to say now that those parents who face terminal diagnoses for their baby during pregnancy have my heartfelt respect. I would not want to walk in their shoes ever ...I am just saying .

What if we weren't given a choice and all those identified as "life unworthy of life" were terminated. It is all too terrifying.

I still wish I was normal and so was my son.

PGD was not an option for us ...


So is black a shade or a colour ?

Black is a Colour. Black absorbs all frequencies of light in the visible spectrum producing the colour black. The black object does not emit or reflect light.

Black is a Shade. Although Black is primarily considered a colour, Black can also be part of the Achromatic colour sets - Grey, (or Gray) is a range of tints and shades ranging from Black to White.

so the argument here is not "Is it a shade or a colour" at all...~It is both!

LIVE every moment ღ♥¸.•*¨`*. ¸.•
LAUGH every day ღ♥¸.•*¨`*. ¸.•
LOVE beyond words ღ♥¸.•*¨`*.¸.•
BE Grateful for what You have¸.•*¨`*.¸.♥☼ and I AM !
♥

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Friday, 29 May 2009

N is for Neurofibromatosis

Another confession . I hate talking about it.

May is International Neurofibromatosis awareness month .I have rarely mentioned it on my blog that I have NF1(much less in real life). It affects about 1 in 3000. It is more common than CF but I know many would never have heard of NF1 or 2. Yes, neuro f.ckity fibromatosis it is a hard word to say and it's even harder living with it.

Twenty years ago this month I discovered it quite by accident , though the signs and features had been there since my infancy.

In May 1989, I found a newsletter from the NFAA - (Neurofibromatosis Association of Australia) on my Aunt's table .I was visiting and as she was busy with her 3 toddlers, my then small cousins, I started to read it. My toddler cousin had not long had an optic glioma removed (common NF1 type tumour on optic nerve ~ removed via brain surgery in 1988/9).

I knew straight away NF1 was what I had ...had since birth. I cried for days , alone and despairing.I was so shocked. I almost lost the plot.

Despite being a registered RN nurse I didn't know much about it. I think the medical profession was largely undereducated too or rather they never mentioned it to most of the 'family' the implications of having NF1 signs & clinical features.

No doctors had ever mentioned it ~ though I had numerous and very large cafe au lait spots (milky coffee coloured / 'dirty' marks) plus other definite signs. After, I calmed down I went to see a neurologist, a geneticist and other doctors. It was more of a case of wait and see...then manage the symptoms. I've seen a few Drs over the years.

NF is a genetic disorder, 50 % dominant inheritance which means pretty much 1 in 2 chance if you have an affected parent. It can also be a new mutation in about half the cases...not quite a freak event but you know what I mean.

The family history started to fall into place.My grandfather, mum, aunt, 2 uncles (I deceased @ 31), my sister, 2 cousins ...now one of my sons and my cousin's daughter (2). My grandfather didn't have much contact with his extended family after he got married but I suspect they carry this too from a few things that were mentioned in hindsight.

I suffered a fair amount of 'teasing' at school because of my many 'birthmarks'. Mild bullying and social 'exclusion' but it wasn't too much to deal with. Just enough to bring misery, luckily I always had a few good friends to make things okay.I am /was so thankful for them. I loved books and reading too so the library was my friend some days.

We [my affected family members] all live relatively normal lives though we have almost all had various 'surgery' for removal various tumours. Now, I have a large one in my left thigh that causes extreme pain if pressure is applied (which wriggly little boys do often climbing onto my lap) and other sensations -tingling/pulling/tightness.

When I wean my sons I'll go see a surgeon maybe ! They say they leave them alone unless they cause pressure/pain or other damage by structure /organ or nerve compression .

I have hundreds of small nodules/skin tumours/ ugly bumps & soft lumps and freckling (skin pigmentation). My body is hideous to me but clothes cover up most things , thank 'God' ! I have several small soft lumps on my face but nothing too hideous or noticeable ...yet. Click here to see a picture of elderly woman's back severe NF 'skin'.

There is a huge range of severity and manifestations even within the one family and it varies from individual to individual. (They call it variable expressivity).

I joined the NFAA years ago for a few years .One year I didn't renew my subscription .I put it off because the newsletters were too depressing and scary. I couldn't read them anymore.( I still haven't re joined.)

Still , it gives me a spirit of darkness and has been upsetting me more lately. Unsettling and freaking me out.I won't describe it as being depressed, but my mood lately has been bleaker and it scares me.
There I said it...
Neurofibromatosis awareness month is almost over but the awareness that I have to live with this sh.t is with me everyday.
That my young son has to face this life long 'demon' too gives me a lot of grief. We keep a close watch on him .He is being followed up closely by the Children's hospital clinics. There is no cure ...yet ! Management is a program of treatment by a team of specialists to manage symptoms or complications as and if they arise ... if .
My twin sons are also participating in a 7 yr study about cognitive development in NF1.

Facts & Stats about NF1.NF is not a rare disorder, it is the most common neurological disorder caused by a single gene. Find out about the facts and stats for NF here.
It is (was) Ehlers Danlos awareness month too Veronica knows all about this.

Like Veronica ...the main reason I wrote this post was not to 'whinge' but that if I could bring awareness to one person /family and help them in some way then it was worth baring all.
I rarely talk about NF, even within my extended family, so believe me when I say how hard this was to do.

♥

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Monday, 26 May 2008

Aerobix and other heavy stuff


MY Winter Exercise program...

I am on it !

Take one Weetbix.

Take an Aero chocolate bar.



Crumble the Aero over the Weetbix. Voila!

AEROBIX !

Seriously I would not do that to a chocolate and I don't really eat aero bars because they are so full of holes - hole lot of nothing !





I do have a muffin top and a twin belly flap ... tucks neatly into my jean though and is hidden by top.I don't mind this at all - the babies love to poke my belly button in and out. It is a cheap amusement whilst nursing - except it makes me jump.
I am inspired to start a real exercise program though after reading Lightening's efforts.I want to get fit. My weight is in the healthy weight range but on the limits. I will never wear a bikini again my body is very ugly due to NF1.
So some serious stuff now ...
I will talk more about this later week . May is Neurofibromatosis awareness month -and I am in still in denial ...It is as common a genetic disorder as CysticFibrosis yet most people have never heard of NF.

Have you ?

Rewinding at the Fibro today 7/5/2010 ...

Friday, 4 January 2008

18 month Letter to S & J


Friday, January 4, 2008
Dear Babies Toddlers

Dear Sam & Joel,

Today, you are 1 year 6 months and 4 days old. I really can't believe it has been that long already. Nor that it has taken me this long to write down these thoughts.The months have flown, thats over 78 weeks or 552 days or 13248 hours or 794880 minutes of joy and endless delight.

We found at 4 weeks , we were pregnant on our second IVF cycle but third transfer of two embryos - you guys.Our last little ones. At 5 weeks6 days we knew there was definitely one heartbeat possibly two of you but it wasn't offically confirmed till 7 weeks 2 days.

Two years ago, I was 9 weeks pregnant when I started 'spotting' for the second time between Christmas and New Year .I thought I was losing one or both of you. A unscheduled ultrasound showed me you were both okay. I continued to spot for the next 4 - 5 weeks. I was in fear of losing you.

It was with baited breath I went to the Nuchal translucency (NT) scan or Nuchal fold.I was ecstatic to be pregnant with a healthy 'pair in there', 'twins'. I anxiously waited for the first trimester to end.Though, I knew there were no guarantees as I lost your sister at 26 weeks or before actually. I knew so many angels even born at fullterm. Still, I could finally start to dream a little about being able to meet you both, and see you and hold you as living breathing treasures.I had a little more hope and so much phenomenal support.

At 18 weeks we found out you were both boys - sons & 'brothers' ... not that I ever disappointed but I know others expressed regrets there was no girl in there... because of Charlotte. In a way I was relieved that there would be no comparisons. I lived and breathed for the ultrasounds every two weeks from about 22 weeks. Every time I waited my heart skipped a beat till the sonographer showed me both your heartbeats. I found out by ultrasound that your sister's heart had just stopped beating ...no reason known.

When it became apparent you had to be born a month early @ 35weeks and 4 days by caesarian section. I was so scared I had failed you. All was eventually ok. I cried when you were about to be born - we had waited for over 14yrs to hear those first cries (your big brother we adopted @13 months) and your sister slipped so still and silently into this world - then the only cries were mine.

It took us 19 days for them to let us take you home though in my mind you were ready after a week ... I wanted you to home so much .You were both well but they said it was 'feeding' problems. I couldn't understand it. I hated walking out the hospital door empty handed 7 days after your birth, on the eve of my birthday too ... though only an interim goodbye - it was reminiscent of 22 months before when we said goodbye to Charlotte (forever).

I am sorry I didn't get to write an actual 12 month letter .I endeavoured to do it but failed and now you've been with us for 18 months. The first few months were gone in the blink of an eye ... not that we got a lot of sleep. At best you slept 4-5 hrs in a stretch but not always at the same time. You were both fairly settled babes and breast milk soon had your sleeping again. I was always tired but then again I stayed up too late on the Internet. Though I was always a little tired I was never overwhelmed. I was perpetually scared something would go 'wrong' or scared that I wasn't going to be a good mum. I knew how to do how to feed you, burp you,settle you but could I love you both, enough.

At the beginning I couldn't get enough of you ... when someone else was there holding you both I wanted them to give you back. For a long time all you did was sleep and eat, pee and poop.I didn't want to wish the time away. Though I was so eager to fast forward to when I could really play and interact with you. As the days went by you both were smiling and showing your individuality and reaching out to grasp the world around you with both hands.

Sam and Joel , you were, still are, such happy,smiley babies, the littlest things bring the brightest smiles to your faces and your blue eyes light up. Where ever I went people were smiling and cooing, and later lining up to high-five you both - your big brother taught you early. I was so proud of you.

Before you were born, and especially when you arrived I already loved you both so much . I wasn't prepared for how much you would impact our life in a blessed though chaotic way. Everything is more worthwhile. As, I watch you sleeping or at play I realize the time is flying by faster than I want it too.

Before I knew it, there was a parade of triumphant firsts that I never got to properly document.It seems that eighteen months has passed in a blur . Countless precious memories were made, with an endless list of spectacular firsts ... first smiles and coos, first words (mum), first rolls, first foods, first creeping,clocking,crawls & cruising, then sitting, first steps, first climbs and falls, first birthdays, first teeth and first bites and first reciprocal hugs. I wish I could replay your first birthday ... I wanted to remember, to cherish every single moment of your lives.

Joel, you spent two months in the Pavlic harness for your hip dysplasia - from 4 months to six months - no baths the first month, then only a handful of baths the next. You didn't mind though your movement was very restricted. You took it so well. It didn't stop you later from being first to crawl and walk .

Joel, the day you got really sick with high temperatures and they thought you had meningitis @ 5months was the worse. You didn't but it was scary seeing you endure the lumbar punctures. When they diagnosed a UTI - related to kidney reflux and kidney dysplasia I was so worried.It is being well managed but is an ongoing medical issue.It breaks my heart when you have to have blood tests and scans etc but we hope you will grow out of with no permanent kidney damage.I hope this is the worse of it over and you don't have any other medical problems.

Joel, you started to breastfeed at just over 5 months and it was magical. I never imagined it possible after all those months of exclusive expressing and pumping for you. You soon became a breast man like your brother.You both are fiercely jealous if one is feeding and not the other. I guess that is the time that stresses me the most ... leaving one of you to cry and not being able to meet your needs then and there. Twin/tandem feeding is awesome but you rarely go to sleep for a nap or at nighttime unless I feed you single. You both poke, prod and grab at each other, laughing and distracting each other from feeding properly or to sleep.

Sam , the day I saw the cafe au lait marks appearing and realised you have inherited the genetic disorder that I have (and other family members). I wanted to crawl into a ball and cry.It still breaks my heart every time I see your na.ked body permanently marked .I don't know what the future holds in regards to what you may endure.It is so variable and very scary. I will there for you as best I can to make sure you are okay. I am so sorry my precious boy for this.

Every day I see more independence and your little personalities shining through but you don't cause too much trouble.You have gone from my tiny 4lb12 and 6lb8 babies to lean but cuddly toddlers - though Sammy is now the lighter of you both.

The madness and mayhem that reigned once you could crawl around 9 months ,doubled when you could cruise the furniture at 10 - 11months, then escalated when you could walk. Joel, you took the first tentative two or three steps alone in late August and Sam not till a few weeks later . It wasn't long before you both were walking halfway across the family room into Daddy or my arms! .Your growing up so quickly and I don't want to wish your babyhood away but I let you feed yourselves . The mess is inevitable but we have a lot of laughs.Now we try to get you to help with picking up toys and things and you are learning quickly.

Amazingly you are good boys most of the time.Though mischievous of late I know it all part of your development and the crazy days of climbing and scaling the furniture will pass.So will the paper shredding and trashing of all things within your reach.You sleep well in our bed, with the side car.I love waking up with you both beside me and snuggling with you . I admit I do have days where I want to shriek and pull my hair out but they are few. My grey hairs are still few so that is a good sign.

You can undo your cloth nappies in a flash and remove parts of your clothing ... uh oh but it is funny. You have wicked grins as we say "NO !"

I still cherish the moments I can rock you in my arms or juggle you both on my lap, because often you both won't sit still long enough for me to do that unless you are breastfeeding .Trying to get you to sit still to read a book is a struggle - you just want to play.

Joel, you are so happy and cheerful all the time except when you are waiting to be fed. You are the patient one. You enjoy your food and eat well. You like vegetables but not salad. Cheese and eggs -no way. You play the drums like a little pro and have everyone in awe of your talent already. You like to imitate your big brother and getting into boxes is one of your favourite things. I love your chubby arms and legs ...and that cheeky smile .Your hearty giggle is such a happy laugh.We all start laughing. You love to wear things around your neck and the stacking rings as bangles. You can sign for milk but it more of wave with your fingers and a huge grin...so very cute. You love the dummy and helps when you have to wait.

Sam, you like to have attention and to be fed first up, you can cry quite loudly and have a tanty if I try to do anything else but feed you.Even now you know exactly when you want to be breastfed and sign for milk with a cheeky grin if you aren't in tears.You are easy going, and can usually be calmed quickly with the breast.Late at night if I am at the computer, you will get out of bed, leaving Daddy, to toddle down the hallway to find me to nurse. It is a struggle to get any food into you ...barely no puree vegies/fruit/rice cereal has touched your lips but slowly we are increasing and varying your diet from plain rice and custard. You are the charmer and your blue, blue eyes are breathtaking. I hope they stay that way.You now bring Joel his dummy ... unless you are teasing and taking it away to chew on it.

I am not sure how much longer our nursing will continue .Though people are asking me - how much longer ? but I hope I will be able to demand feed you till at least 2 and beyond if all goes well. I am pleased it worked for us.Your Daddy has given me so much support.

You both sit on command at the mention of a biscuit or Chocolate. It is so funny to see you drop instantly to the floor and wait expectantly or raise you hands in anticipation. You will doing anything for a Smartie, but you quite happily pass them to each other when we ask you to .. sometimes both go in one mouth ... uh oh !.

Your attempts to talk and communicate are becoming clearer though you have only a few clear words. Mumma, Daddy, D. Nan Nan, Dog, uh oh and uh uh uh 'that' are most noticeable but you understand much more and can follow many requests ... like put you hat on, outside,lets go to car and "sit down" !.

You both love to be tickled and rumbled by your big brother. Everywhere you go your smiles melt hearts every time (and daddy's and mine especially). I love to grab and kiss your chubby legs and feet when we swing outside. Neither of you will sit and watch TV but you can channel surf like pros with the remote or manually. You are good at button pressing and love mobile phones. Bath time is fun and tossing the toys in and then later 'out' is a favourite too.

You are my precious little guys. It is not possible to put into words how much you mean to us after losing your sister. I struggle to imagine what if's ... if she didn't die and what if you were all together or would you be here at all...???

Being outside is your favourite past time and you both love the swings,slide, play gym, cars, balls and little toddler trikes.you like to throw the ball for the dog but he is less than impressed at your distance and aim.

Sam, you still only have 5 teeth ... maybe that is a good thing LOL you only got your first tooth at almost 13 months. Joel, got your first at 13.5 months and now you are up to 7 teeth with your top molars points just breaking through. You have given each other a fierce chomp or two on the finger (s) - because you insist on putting it in an open mouth and tears have flowed - you haven't learned yet. I get very cross when you bite me though thankfully it is not often.

You are such good buddies though you had everyone in stitches at Christmas tussling and fighting over a toy.You love to play along side each other and you share well. I can ask each of you to give the other a biscuit or smarties or toy and amazingly you do (most of the time).I am looking forward to watching you grow up into talented young men ... hopefully not for along time. lets take it one day at a time please. Your big brother at 14yrs is so grownup now - (well he thinks so) I want to slowly enjoy every minute of you two.

In the whole scheme of things 18 months is a short time when I think of all the time we will have together. I pray it will be a long time.The last 18 months of my life have been the best I have ever experienced. I love you both so much and every day I give thanks to God that I have you in my life .If it is any indication how much fun this first year and half has been , the days ahead can only bring more laughter, more fun and countless joys.

Just this morning as we shared my our breakfast cereal you were both giggling and laughing hysterically when the I scooted the toy motorbike across the table and then it went onto the floor, over and over - I had to laugh too. Laughing is a such wonderful way to start the day.

Love,
Mummy