thumbs up, thumbs down

From the weekend ...................

Thumbs Down - to the woman at the gardening shop that took my baby's hand to get his attention and when he turned to look at her, dropped his hand like it was a hot potato, Owen bless him started waving like crazy - she turned away. You broke my heart and I burst into tears as soon as I got to the car -at first I will admit I was crying for myself but then I thought - Owen will have to deal with people like that all his life - and then I was crying for my innocent, beautiful baby.

Thumbs Up - to the woman from the local bakery who played peek-a-boo with my baby as he sat in the pram while I selected a tasty treat from the display. When I went to pay for the sweets and I stood blocking her view of Owen and she said "you've interrupted the game", so I moved to the side so that they could continue, Owen's giggles and the young woman's smiles warmed and soothed my heart. And Thumbs Up - to the woman at the checkout who said hi when Owen waved and then played "hi fives" with him and to her husband who said "very cute". There will always be people that can "see" Owen for who HE is, his beauty and his playfulness.

NOTE TO SELF - learn to focus on the positive

Tuesday is music

I have not been in a good place this past week.

I was feeling stressed about Cy starting preschool next year and which days to send him. I initally thought Tuesday Wednesday would be good but that would mean we would have to join a new music class, we currently go on Tuesday mornings and the thought of having to meet new people, a new group made me feel really anxious - and I wondered have I got social anxiety? Because I just can't do it, can't meet more new people. I feel this way I think because I still feel bruised and battered by grief, I don't want to expose myself to any more polite (and not so polite) looks, questions, those "sympathetic", kind smiles. Damm it I am so over it.

So I have decided to send Cy to preschool on other days of the week so we dont' have to move to a new music group. I like the Tuesday morning group we are in, everyone knows us, there are no questions, looks or those kind smiles, just joy, laughter and encouragement. I love taking the boys there.

Got to give myself a break ......

Just the way they planned it

A few days after Cyrus was born I had a very strong feeling that there was another baby waiting to be born, I forgot about that feeling until 8 months later when I found out I was pregnant again. We had tried for 12 months to have Cy, so to get pregnant without even trying and only on my first cycle after Cys birth was like a miracle to us !

When I was pregnant with Owen I told people that this spirit has rushed at us because he needed to be born NOW that he had such a passion and zest for life, he didn't want to miss a moment, I really felt this with every fibre of my being.

Owen also managed to make an early entrance into the world, when my waters broke 6 weeks early (he was 6 pound 10) rushing to be with us. (the doctors later told me that because my uterus was damaged by Cy's C-section it would have ruptured at around 38 weeks both of us could have died).

The extra chromosome had saved our lives. (the 47th chromosome makes the placenta age faster (mine had started to calcify) it hits its used by date earlier and signals to the baby its time to be born, this is not for every DS pregnancy but for many).

Now when I look at these two boys together, Cy and Owen, I see that they are meant to do this journey together. Its sounds crazy but I think this is the way they planned it to be all along, even before they were born and I get to live with extreme cuteness everyday - gotta love that.

Sand Play

I got a surprise today when I went to download some photos of Owen and Cy playing in the sand. I found this photo taken nearly a year ago to the day, when we "offically opened" the sandpit . It reminds me of just how far we have come in a year.

Owen was 7 months old, he often held his head on the side like this (I had forgotten that) it resolved without any intervention.


A year later Owen and Cy now play in the sand together everyday.



He loves the sand, (eats way too much of it), he has also learnt to pat it, dig in it and load the truck. (don't know what is going on with his hair here mmmm might be time for a haircut)

the good and the bad

Took Owey for his first hearing assessment after ear tubes last week.

He did so well and it was obvious to me immediately that he could hear better.

But then the audiologist looked in his ears and couldn't find the ear tube in the right ear all he could see was tiny, hairy ear canals. Then the left ear - fluid - blocking the ear tube. I felt paniced and devestated.

I got outside to Col and lost it, swore and cursed and just fell apart, and Col said lets go see the ENT........ right now ,

We drove up to the ENT's office and gratefully he saw us inbetween patients - He sucked the fluid out of Owen's left ear its greenish eeeuuuuukkkkk. And he took a very gentle look in his right ear and could see the ear tube and its working perfectly, no infection ! YIPEEE

So the plan is - antibiotic drops for a week and then another check up, please pray that the drops work!

and Col I LOVE you

EI how much is enough

From our government funded EI program Owen has had:

• six 1 hour sessions of speech therapy in the past 18 months
• Four, 1 hour sessions of OT in 18 months.
• PT 1 hour about every 6 -8 weeks though we haven't had a session for months.
• A hydrotherapy class for kids with disabilities is run every week for 1 hour (Owen LOVES this). Our attendance is sporadic though because of illness, school holidays and Owen sleep times changing over the past 18 months.
• we also attend an Early Intervention Playgroup once a week- its a free-play session, some singing, and usually a therapist will also attend to answer any questions. Its not a great session, it always seems so disjointed.

Is that enough?

Well I know I don't feel very well supported by the formal EI program, I do feel I have to do it by myself, it's stressful and tiring - emotionally, physically and mentally.

In addition to the above we also:

• attend a kindermusic session (30 minutes a week) I have taken Owen since he was a tiny baby, initally just in the baby harness but now he takes part in the lessons alongside his brother.
• attend a Rudolf Steiner Playgroup on Mondays it goes for 2.5 hours lots of lovely sensory play, natural materials, rythmn, singing and repetition, both Cyrus and Owen are enjoying it. (this playgroup clashes with Hyrdotherapy so we are not doing hydro this term)
• I have Owen and Cyrus to our private Osteopath/myofasial (?spelling) therapist for regular assessments since they were both babies (Cyrus has gross motor and speech delays)
• I have done treadmill training with Owen from 10 months till about 13 months 5 days a week until we were all frustrated with it. But now that he is crawling well and has better core strength I aim to have him start again yesterday he did 5 minutes (30 meteres) stepping it out the whole time.
• He watches the Your baby can read DVD's about 3 times a week (we aren't big TV watchers at our house) Owen and Cy both love the DVD's and can read quite a few words from them.

Then there is all the normal stuff you do with kids, play outside, in the sand pit, swing on the swings (everyday), sing to them, read to them, wrestle with them on the floor.

Is it enough?

Its all I can do.

Its all I know to do, at this time.

I wish there were more hours in the day

I wish I had more energy

I wish I had a crystal ball

so I could know

is this is enough?

Tubes are IN

After a very long wait and two cancelled surgerys due to illness the Ear Tubes (grommets) are finally in!

Ghosts of Open Heart Surgery made it a bit traumatic for me, but Owey did fantastic.

Surgery lasted about 30 minutes there was lots of fluid and the surgeon said "nothing like a challange first thing in the morning", the grommets were as big as Owens ear canals and it was difficult to get them in. After the surgery Owen nursed and slept for about 30 minutes then stretched and woke up smilling, he was joyful and happy all day.

He has a bit of bloody gunk coming out his right ear, not alot, but we are keeping an eye on it, he is on antibiotic drops until Sunday fingers crossed it will clear.

I am not sure if we are meant to see instant results or if it will take time, but today he has attempted to say Bang Bang -" Ng Ng" - which is a new sound for him, a soft sound - his other sounds (words) are all harsh vowel sounds and he also said Car softly rather than his usual harsh KRRRR KRRR.

Now I am trying not to worry about infection, scarring, the tubes falling out or becoming blocked I didn't realise that once the tubes were in that there was a whole nother bag of things to worry an obsess over ! time for my own harsh vowel sounds AHHHHHHHHHHGGGHHHH