Moving forward...

I just wanted to take this opportunity to thank everyone who has been so loving and supportive as we faced our latest hurdle. With the benefit of week the diagnosis seems less dire and I am certain that we are already doing the right things for Mitch regarding his speech. Our latest playgroup at the Hospital was an interesting affair because it seemed obvious to me that our case had been discussed. Everyone was very careful with what they said - but the good news is that we will be having team meeting with the therapists, the paed, the kindy and ourselves to discuss the plans for Mitch & Harry. This seems a good way to make sure we are moving towards a common goal. I will reserve my judgement on the speech therapist until after this meeting...but I can say that in the cold, hard light of day it is apparent to me that she doesn't know how determined we are as a family to ensure our boys get optimal treatment.

A dear friend of mine reminded me today about how I have somehow lost myself over the past four years - and I am sure this happens to most parents. However her words did have a ring of truth to them - so I am going to try my best to let all of this therapy talk slide until the next meeting and focus on just being me and having fun with the boys. The beautiful thing is that both boys appear to have no clue about my inner turmoil and are loving life! Although if Harry gives me too much more backchat his life may be shorter than he can imagine (grin).


Speaking of Harry I thought you may like this layout. It just captures his Joie de vivre - his love of life! Down at the beach and loving splashing about in the shallows. Notice he is wearing his lifejacket - which he insists on wearing even in ankle deep water (grin). He is definitely his mother's child - obsessed with the detail. He checks before we go anywhere what we are doing, who we will be seeing and what snacks I have packed... as I said he is a mini-me through and through.

Anyway that's it from me for tonight.
Thank you again to everyone who has emailed, phoned or spoken to me in person. You have no idea how much it has meant to me.

Hugs,
Lisa

Speech Therapy, Scrapbooking and Swimming...

I know that this is a strange combination but it really sums up our past month.
Firstly speech therapy... where do I begin? I was informed yesterday by the speech therapist in the boys' hospital group that Mitchell doesn't have verbal dyspraxia he has a language disorder (Harry is to be assessed next week). She said that he uses a lot of learnt phrases to fill in the conversation (which I have long known) and that he really doesn't understand a lot of what we are saying to him. We have now been told that he needs more intensive one on one therapy than the hospital can provide. The funny thing is that just at the beginning of term we got to the top of the public waiting list for our area, but the speech therapists agreed amongst themselves that the boys didn't need two seperate speech therapists ( due to possible confusion for Mitch). So now we are back at square one. Up until now we have paid for a private therapist through our health insurance because the boys weren't deemed to have a significant speech problem initially. Then when we were referred to a Paed when the boys were 2 1/2 years old, he felt the boys needed help with speech and got us into this hospital group and on the Child Development Unit waiting list for ongoing assistance during schooling.

Last night I just fell apart. How much more can I take? I am so tired of never getting a break - it is just one thing after another. I said to my friend yesterday that the moment I went into premature labour there has never been a day without worry - and I am just so bloody tired. I know I shouldn't complain and things could be so much worse, but I feel at breaking point. I don't know what to think. What does this mean for Mitchell? Does he also have an intellectual delay? Will he ever understand? Will speech always be a battle for him? And then how is it that one speech therapist (who has seen him for over a year)has said verbal dyspraxia with good receptive skills and another (who has seen him twice)says no this is wrong he has a language disorder and has poor receptive skills? How as the mother do I know who is right? It's not a rollercoaster - because that has a start and end - this is a merry-go-round where I am forever trapped waiting for the next calamity to strike. How do I get past my tears? And how do I know what to do next?


I DO know that tomorrow I will get up and the boys and I will face whatever challenges are ahead, but I am just so tired.

Now on a lighter note (thank god I hear you cry) scrapbooking - for those of you that know me well you would realise that I LOVE scrapbooking! If I could do it every day I would! Anyway, it seems like the gods have been conspiring against me over the past week because Harry has decided he doesn't want to go to bed. So our nights consist of Kev and I playing tag team putting Harry back to bed until he falls into an exhausted slumber. Now this would be okay except that he insists on screaming endlessly in a pitch that can decalcify the bones! I have no idea why he has started this... maybe it is just a stage, but boy is it exhausting. So by the time he falls asleep I feel to tired to contemplate anything creative so there goes my scrapbooking... However I have manage to complete one layout for the Scrapbooking 4 Less Scraptacular competition - it is of Mitch looking very grown up and serious at Port Vincent.

And finally swimming. I have had great intentions for months to get the boys into a swimming class more for the exercise than anything - maybe it will exhaust Harry so much he will beg me to let him sleep (I dream). But I just can't seem to get motivated. The boys love the pool and so do I - although I have been known to frighten small children as I clamber into their wading pool with both boys. Kev on the other hand doesn't like swimming or pools or the beach at all. Which makes it an interesting exercise when we go to the pool and he doesn't want to swim. Because let me tell you there is nothing more difficult than watching two little children at once in the pool! So for the moment I have decided to put this into the too hard basket. Sounds un-Australian doesn't it. Maybe my boys will be scarred for life with the knowledge that they didn't learn to swim until they were four years old. Or maybe they will be scarred by the mental image of me in bathers! Who knows. I suppose that's the interesting thing about parenting, you never know what is going to happen and how this will come back to haunt you in your dotage...

With much love,
Lisa

Has Tom Cruise finally flipped his lid?

Has Tom Cruise finally completely lost it? I couldn't resist checking out his latest effort on YouTube - and what a frightening display it was! Laughing inappropriately Mr Cruise rants on and on about his special gifts as a Scientologist...without revealing what those gifts are or why he feels so special. Makes you a bit scared to watch it! Well it did scare me anyway. And I am hard to scare...after all I have twins! Check out the interview which allegedly was leaked from a Scientology Forum...




Its a strange, strange world...
Lisa

For all parents who feel that their job is never done...

For all parents who feel that their job is never done...and no-one listens to what they say...
Here is a fabulous song someone sent me a link for...

Cabin Fever...

Is it just me or does anyone else notice how their children seem to fight more when it is a really hot day? Recently we have had days over 38 degrees Celcius and so we have been house bound at times. It just seems this kind of weather brings out the worst in my boys. They are happily playing and I turn around to find one of them trying to embed a toy in the other one's skull! I don't know who ends up doing the most yelling - them or me. I start each day with a list of lovely activities for us to try and by mid-morning I am thinking of putting them both up for adoption! Harry in particular has this piercing voice which only gets louder as the day progresses - he seems to have NO internal dialogue and tells me EVERYTHING he is thinking or doing.


It goes something like this...

MUMMY!
MUMMY!
Yes Harry
I play with toys!
I play with Thomas the tank!
Yes
MUMMY!
MUMMY!
Yes Harry
Mitchell is playing too!

So you get the idea - I mean I love his ability to communicate it would just be nice if he didn't do it ALL OF HIS WAKING HOURS!!!


Mitch on the other hand is usually quite happy cuddling his teddies and playing "pignigs" where he sets up lego and play food for all of his toys. It's just that Harry can't help but organise him (I don't know who he takes after). And as you can imagine this leads to tears. Mitch fights to the death to keep his toys and Harry simply lays on top of him until he can't breathe.

So Mitch has discovered the ultimate weapon - biting! Yeah terrific - my three year old is biting his twin brother. Although I can sympathise because if someone kept telling me what to do and kept taking my toys I would want to bite them too (note to self...make sure Kev is happy - he has sharp teeth!).


So I am looking forward to a special day tomorrow - CHILD CARE!!!!!! Yahoo! I drop the boys off and have long periods of silence. Which really is ironic, because the people that know me well know how I LOVE to talk. So the ultimate irony I have a mini-me who is driving me insane! You know how when you were naughty your Mum would say "one day you will have children and then you will know what it's like!". I do now!


I love my boys to distraction - but I am worn out. So off tomorrow to catch up with a girlfriend and share a glass or two of wine.

Aaaahhhh..... bliss....

Wishing everyone a blissful week,
Hugs,
Lisa

Farmer Christmas and Happy Birthday!

What a fun time... being three years old and experiencing Xmas in all its noise, fun and messiness! Mitch & Harry have really celebrated Xmas this year.

They are a little confused about the details. They know that it is "Baby Jesus' birthday Mum", but they think the jolly fellow in the red suit is "Farmer Xmas" (which has cause much amusement to friends and strangers alike). They have loved receiving gifts (who doesn't), but even more they have relished handing out presents and a big hug or kiss. They now want chocolate for breakfast, lunch and tea (me too), but are starting to realise that all good things must come to an end.

An added bonus has been having Kev home over Xmas. They adore their Daddy and love going out to the shed to do secret men's business - who knows what they do in there! And most of the time they have wanted to help with sorting out toys and handing on some much loved treasures to the "younger generation" - although Harry did sob when his last sleeping bag for bed went to his little cousin Liam.

We have also been lucky enough to spend time with our dear friend Avi and his family (photo courtesy of Charles- Avi's father). We got to show them some tourist sites and enjoyed far too much good food - highly recommend the Jerusalem in Hindley Street - absolutely yummy food. The boys love Uncle Avi and were much taken with his thoughtful gifts - Thomas the Tank Engine series one through to five is on permanently in our house these days.

Apart from that the past week has been almost unbearably hot. And the boys have missed being able to spend large amounts of time playing outside - and so has Mummy!

Hoping that each and everyone of you had a wonderful Xmas and is set for a joyous New Year.

With much love,

Lisa

PS - look at the photo closely and you'll see why that location was chosen (grin)

I belong to an international premature baby/ child site Preemie-l and recently discussions have centred around the impacts of extreme prematurity.

I thought I would share a little of our journey. Our twin boys Mitchell & Harrison were conceived after 8 years on IVF. It was a difficult pregnancy with many alarms, but we made it to 24 weeks and were feeling very excited about the prospect of being parents after so many years of trying to conceive. My husband was transferred interstate (back to my family) and I drove the 1600kms with my friend to our new home. It was a blissful time - I could feel the babies moving and apart from the morning sickness which never abated I felt happy and well. I did however notice that whenever I went for a walk my belly would tighten - but I reassured myself that these were just Braxton Hicks contractions. On August 12th 2004 I noticed a small pink loss of mucous when I went to the bathroom. I tried not to worry and I went about my normal day. BUT later that morning I noticed the same thing, so I contacted my Obgyn. I was at my mum's place, but didn't want to worry her, so I went into another room and quietly called the receptionist. She reassured me it was probably nothing, but organised for me to come in later in the evening. 6pm that night my hubby and I went in for what I believed would be a routine check-up. But we were told I was 4cm dilated and in labour and my babies would be born that night.

Somehow we managed to hold off their arrival for 4 days and suddenly we had two tiny babies fighting to survive. Mitch 660g and coping on CPAP and Harry 840g and struggling even with ventilation. Hours passed into days. Days into weeks. Weeks into months. Many days I would hang over the top of their humidicribs silently willing them to survive and tears fell. I appeared (to my family and the health professionals) to cope, but inside I was a mess. How had I done this to my precious babies? This must be my fault...musn't it? Had I pushed myself too hard to unpack our house? Should I have driven interstate? At this stage I listened to all the advice from friends, family and medical professionals - prem babies catch up by 2 years of age...it's remarkable what medical science can do these days...my friend had a child with the same problems and you would never know it today... As a parent I clung desperately to the hope that despite being born 15 weeks too early that somehow they would defy the statistics and would be "normal"...what ever that meant. I am sure that I heard what I wanted to hear, but at the same time I am certain that many people also told me what they thought I wanted to hear. So after 5 long months I brought home two tiny, fragile babies who struggled to feed and failed to meet the milestones I had read about in my myriad of pregnancy and baby books. Still I clung onto the hope that in two years they would be barely recognisable as having being born prematurely, and that finally I could relax.

And now we are 3 1/2 years along in our journey and each day brings new challenges. Mitch & Harry are happy, delightful little boys but they ARE exhausting. They rarely sit still and are very loud. Harry NEVER stops talking unless he is asleep, he has sensory issues, speech problems, gross and fine motor delays, chronic malabsorption issues through bowel surgeries and is yet to be toilet trained. Mitch is poorly coordinated, falls over at least 20 times a day, has verbal dyspraxia and as a result becomes easily frustrated and lashes out at his more verbose brother, he also has malabsorption problems, astigmatism and myopia (due for glasses soon) and is yet to be toilet trained. Both boys attend two therapy groups a week as well as other numerous appointments. However despite all of the obstacles in their way they LOVE life and constantly amaze Kev & I with their determination and courage. Harry has learnt to climb on all kinds of play equipment without help. And Mitch loves to take care of his various teddies and dolls - lovingly feeding them and putting them to bed.

FINALLY we have been approved for a small carer's payment fortnightly to try and offset some of the associated costs of their ongoing therapy and transportation. And only now has it finally hit me that this will NEVER end. That my beautiful boys will always have impacts from their premature arrival. Somehow I had imagined or convinced myself that with enough therapy, love and attention, that one day a doctor would say to me "your boys are 'cured'". BUT that will never be. Please don't misunderstand me...I love and adore my boys and I can't imagine my life without them. I just (sometimes) feel sad that Mitch & Harry face life with additional challenges, when sometimes life is hard enough as it is.

Thank you for letting me share my story,

Lisa

A very special Xmas party

Yesterday we were fortunate to go to the Women's & Children's Hospital Premature Bay Xmas Party...

Fortunate to catch up with the staff who helped make our journey through NICU a little less traumatic...

Fortunate to spend time with the friends we made whilst the boys were in hospital...

And fortunate to have the opportunity to celebrate Xmas with Mitch & Harry after such a difficult start to their lives...

BUT I suppose most of all I felt fortunate when I looked around at so many children and realised that Mitch & Harry could have had it so much worse. There were children with permanent feeding tubes, with oxygen, in wheelchairs, and with obvious lifelong problems.

And yet amongst all the families who had gathered to celebrate Xmas there was a feeling that somehow we had survived.

As I listened to the excited chatter of the children waiting for Father Xmas to arrive I realised how much this journey over the past three and a half years has changed me...

I celebrate the small things, rather than longing for the big things. Harry now dresses himself with just a little help. And Mitch loves to help around the house. These may seem small things to others, but to me they are a precious reminder of just how far both boys have come from the fragile beings desperately clinging to life in NICU.

I try not to sweat the small stuff (although sometimes I still do). So what if the boys have food on themselves, the table and the floor. They love to eat and for many parents of prem babies this is a dream come true. How fortunate are we that both boys eat without any pressure from us!

Most of all I treasure the special relationships in my life. There are so many people I would have never known if not for the boys' premature birth. Caring doctors, nurses and allied health professionals. And dear friends who came into my life just when I needed them. I nurture those relationships to the best of my ability and hope that those special people realise what a gift they have been in my life.

Life has a funny way of teaching us the lessons we need to know :-)

Sending lots of love to my family and friends,

Lisa

The continuing adventures of Mitch & Harry

So much is happening at our house at the moment...

Mitch & Harry have finally graduated to big boy beds and their own rooms. The original plan was to have them in the same room - but due to the space limitations of both bedrooms it worked out easier to have them in different rooms. They are still next to each other and we often find them climbing into bed together for a cuddle. We invested in some Ikea shelving units for their toys and they love to play with their toys in their room. Fortunately they are fairly good at packing up with a bit of help. Anyone who visits our house is immediately dragged into the boys' rooms to be shown around.

Our next bit of exciting news is that both boys are now enjoying having tea with Mummy and Daddy at the big table. Up until now they always had tea before we did, because they were ready to eat at around 5pm and Kev often was only getting home at that time. Now they enjoy going outside to play and then coming in to sit at the table. Kev & I have both been surprised at how well they have taken to sitting on their booster seats and remaining seated until we have all finished our meals. An added benefit is that they are now trying new foods much more easily - Harry's new favourite is "eellaclado" (avocado) and Mitch's is "dinosaur lettuce" (because Mummy told him that dinosaurs eat lettuce).

And yesterday we visited the CP Specialist and he has cleared the boys of Cerebral Palsy. He believes that it would have manifested by now and that they are exhibiting none of the classic signs. So we are just to follow up with our Paediatrician. This was a tremendous relief, although even if they had been diagnosed we would have dealt with it. The boys are also getting a great deal of benefit from two special playgroups they are attending a week - both are about 30 mins from home and it seems to take forever to organise ourselves, but the boys are learning and growing, so that's all that matters.

So I suppose that's about it for my update. Life is very busy, but also very happy. Some days Kev and I are exhausted, but one look at our precious little boys and we realise just how lucky we are and just how far we have come.

Hugs,

Lisa xx

Farewell to my beautiful Nana

Dearest Nana,

You have been such an important part of my life ever since I can remember. I know that life for you had become so much harder over the past ten years or so - and I am glad for your sake that your suffering is at an end, but I miss you with every fibre of my being. I can't begin to imagine that I will never see you again in this lifetime. But I hold onto our special times together and the knowledge that you will be with me always.

Nana, you will always be part of my most precious childhood memories...

- Days spent with you and Grandad at Coppins Terrace

- Holidays at the Cottage that Grandad built at Victor Harbour

- Holidays with Mum, Dad, Adam & you at The Coorong

- Visiting you in The Mall at Judells and watching you work your magic

- The BEST roasts in the world!

- Convincing Mum that I should be allowed to shave my legs - thanks Nana :-)

- Giving me my first grown-up handbag and always buying me beautiful dresses

- Encouraging me to study and being so thrilled when I succeeded

- Long chats over endless cups of coffee when I first left home

- Loving me and making me feel so special

Nana, the world is a better place for me and for our entire family because of you. You were more than a grandparent. You were a role model. You were a confidant. And most importantly you were my friend.

I will miss you until God holds us both in the palm of his hand,

with much love,

Lisa