End of year lists

At the end of 2010 here is what Owen is signing

cake, dinosaur, cook, bike, chicken, egg, mouse, cat, hat, queen, dog, milk, drink, eat, toast (gesture), giraffe, ice cream, flower, play, poo, train, music, shark, fish, bee, crocodile (g), frog, sheep, pig, monkey, horse (g), tree, swing, toilet, paper, bath, ball, happy, sad, phone, glasses, star, boat, fish, finished, friends, go, bird, duck, pasta, hot, book, sleep/bed, jump, elephant, run, boy, rock, orange, more, bubble, please, bear, huge, little, rain, rabbit, rainbow, butterfly, wash, gorilla, crash, where, baby (74)

and he sayes - Santa(this week), apple (this week), Randall, Cyrus, car, tiger, cow (moo), ball, hello/bye, light, up, tah (as in give), teddy, Owen, Dad - (15) This week has seen a leap in his attempts at sounds, we are hearing lots of awwwh ba ba ba and la la and hearing two new words in a week is an absolute joy !

He is having his second round of speech therapy this week (his first since he was 13 months old), which is why I have made these lists because I like to go in knowing just what he is doing.

Also this week I put a bowl of pasta onto his highchair table and he put his hand in the bowl and went to take a piece out but dropped it immediately and signed HOT ! and then started to blow, I was so impressed with his understanding, use of sign and what to do next, he has definitely had a little development spurt this week.

I am wary of counting words and signs because I know it can be very misleading for instance Cyrus only had about 30 words/signs at 2 years old and he took an amazing leap this year and now has hundreds of words which he can put into 4-6 word sentences, so there was definitely alot happening "in there" but he just couldn't express himself and his visual learning wasn't very good - perhaps it was his long-sightedness that made it hard or perhaps his gross motor delay but he was never a huge signer, he knows what they are but he didn't use them like Owen does.

And just because Owen knows the sign doesn't mean he understands for instance if he sees a picture of a Gorilla he signs horse and if I say no its not a horse he might sign sheep or some other animal (he is having a guess) and then I have to say no its a gorilla and then he signs gorilla- so he knows the verbal word gorilla and signs appropriately and he can read the word gorilla and sign appropriately but he still has remembering what the actual picture of the gorilla looks like. I guess this is where I see the learning difficulty, the need for for constant repetition I know he will get it one day. Its like the word friend he knows the sign for it but I am pretty sure he has no idea what a friend is but over time I know he will develop an understanding of it just like he has the word hot.

I know that Owen is doing really well with his signs and I enjoy teaching him, I am so grateful for the Internet it has been such an amazing resource, it makes me cringe to think where he would be at if we just relied on the service provided by Disability Services in this country actually its a disgrace but that is the subject for another post at another time.

So looking forward to this new year roll on 2011

inspiration

When Owen was first born I did alot of internet searches on Down Syndrome, most of it was rather depressing and scarey - that was until I found blog land -but before I found the blogs I found this, the most seriously inspirational advertisment ever.



I called Col over to the computer to watch it, we smiled, we laughed, we cried, and felt for the first time that everything would be okay. Emotional. Powerful. Inspirational.

perspective

Owens sudden weaning has compounded so many feelings, I just feel such a total lack of control over my life right now. I wanted to feed him until he was 2.5 -3 years old, he is my LAST baby, he is that baby that MOST needs my milk but he is the baby that has decided he is OVER it - long before I was ready.

Yesterday was the first day I haven't expressed milk, it made me feel so guilty, and angry, I know I could keep pumping to give him the nutritional benefits of milk but I would have to increase the number of times I express to 3 or 4 times a day I have been pumping just twice a day and I have watched my supply dwindle over the past few weeks. It all seems like such a hassle to me at this time. And for me nursing has been about so much more than nutrition.

My breastfeeding relationship with Owen has held me together all these months. When he was first born it wasn't easy and he had a nasogastric tube inserted he needed some practice and he was only 34 weeks old so he tired easily, but after a few days he really had the hang of it and I had lots of milk because I was still feeding Cyrus as well. Nursing bonded Owen and I together after his birth and the shock of the DS diagnosis, because even inside the storm of grief I was able find a peaceful, deep love and acceptance when I held him and nursed him - he was MY son. My milk helped him to recover from his bad Jaundice, it was the only thing I wanted to do after his heart surgery - to nurse him to hold him safely in my arms again and give him the warm, nourishing milk and emotional comfort he needed, and when he got rotovirus and RSV at the same time and pediatrician told me he didn' t need fluid replacement because he was breastfed that was the best feeling, and when he put on kilograms of weight after his heart surgery -pure gorgeous baby fat I felt so proud of our breastfeeding relationship, and through all the other sicknesses he has had, and the asthma, and most recently the ear tube surgery always -breastfeeding was there. It has been a very significant part of our relationship.

Anyway I have started seeing a counsellor because I know I needed to talk to someone. Recently I have felt too much like floatsam and jetsam on the river of life swept along with no rudder, no control. Owen weaning has brought to the surface feelings of anger and guilt and frustration which I know are not just about weaning but are also connected to Down Syndrome and the huge expectations I have put on myself to learn and do all that I can for him (and in the almost total absence of EI support) - believe me that is some heavy load.

Ginkgo biloba

Owen has been on Ginkgo Biloba for a couple of months now, Ginkgo is used to support cognitive function and motor planning, I follow the Changing Minds Protocol - he weighs 12kgs so he has 60mg per day. Ginkgo tastes NASTY. Just try it yourself and you will see why it is necessary to hide it in a strongly flavoured food or drink, I hide it in his favourite Blueberry Soy Yogurt.

So have I noticed any differences ? So hard to tell at this young age I can put most of it down to natural development but he does seem more motivated in a general sense - he now crawls laps of the house (using 4 point crawl), getting into cupboards, seeking and playing with toys on his own (he used to do this of course but he has taken it to a whole new level). He had had no interest in spoon feeding himself until about a month ago when he took the spoon from me loaded it up and fed himself the last half of his meal - with "I can do it myself" attitude, high fives all round. I continue to share feeding him his meals each day.

Recently Owen missed a week of Ginkgo when he was sick with a tummy bug. He has been back on it for 2 weeks now and I have noticed the last 3 days he is really motivated again, it makes me think - this is more than just a coincidence or natural development, I think Ginkgo is making some difference for him but obviously not in the Bed Head/Hair department, its still as crazy as ever.....

I is for icecream

Seems Owen is getting 3 teeth at once, 2 incisors and a molar - all on the bottom jaw - these are teeth numbers 13,14 and 15. He flatly refuses to nurse at all during this time so I am still expressing milk, I don't know how long I will continue to express for - finding time to do it is a pain and I have noticed already that my supply has dropped a little, yes, I am still hoping he will return to nursing after this lot of teething is done. He has the milk on his cereal in the morning and he is drinking it from a straw cup during the day (I have to thicken it with a tablespoon of fruit puree to help him swallow easily) but he is drinking larger and larger amounts from the straw cup, which is a relief, but just to make sure he is getting enough fluids I have also been giving him plenty of fruit, soy yogurt and a new indulgence ICECREAM (actually frozen yogurt) and doesn't he lurrrrveeee it, he insists on holding the stick all by himself too, here he is savouring that last little bit on the stick. mmmmmmmmmmmmmmmmmmmm

Day 6

Day 6 and things are getting worse on the nursing strike -now he is refusing the early morning feed - between 3-5am. This is bad because he hasn't worked out how to get himself back to sleep, so we have been awake today since 3am. Col, Owen and I have all had naps I am so thankful its the weekend. This morning I got up and got Owen at 3am and took him back to our bed and on other mornings he has taken a feed at this time. But this morning he just refused to latch on and he grizzled on and off from 3 till 5 when Col couldn't stand it anymore and got up with him.

I have started expressing to maintain some supply though it is looking pretty grim for him starting nursing again. :( I wonder if this is an example of the DS stubborness people refer to?

During the day Owen is being grizzly and demanding too, he is tired and emotionally overwrought (?spelling) and of course teething. It is so hard to listen to him grizzle when I know a feed would solve alot of the problem, it is so hard to lay there awake in the wee hours knowing a feed would quietly settle back to sweet slumber. With my other two boys I have weaned slowly and gently and there hasn't been this emotional turmoil associated with it, but there really is nothing I can do but cuddle him and be patient and hope that whatever happens, whether he completely weans himself or comes back to nursing, it happens quickly.

On Strike

Owen is on a nursing strike !

It started 4 days ago when he bit me (with those pointy sharp teeth) I yelped out in pain and he burst into tears he really got a fright. And from then on he has refused to nurse during the day at all and only once overnight. If I offer during the day he bites me ! I checked his mouth and he is cutting another molar (tooth #13)and I think he might also be getting an incisor as well). After 4 long days (there has been lots of grizzling from Owen and anxiety for me) I am still holding on to the hope that he will take up nursing again, for me it is really significant part of our relationship. And he hardly drinks from his honey bear cup maybe 50 mls a day, not much, not enough in the hot weather we currently have. I have been giving him lots of fruit puree and wet foods to help keep his fluids up.
I have tried nursing him in the bath, nursing when he is drowsy after a sleep, nursing when he is tired and grizzly, he just wont' have a bar of it and I don't want to push it too much, I am just hoping that after these teeth finish moving he will come back into my arms and back to my lap.

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

coming to terms with the past

I have done some editing of this post because after posting it and then sleeping on it I felt uncomfortable with the original words I had used.

Owen is meant to have just turned 18 months old, -he was due the 27th of April arrived the 21st of March 2009). Its been a wild 19 and a half months. I am not sure whether to write that I have found peace with the 47th chromosome but I am in a good place at the moment. But until very recently I was still struggling with it.

For me the grieving process has been interuptted and complicated by Owens health (jaundice, cardiac failure, sleep apnea, cardiac surgery, hypothyroidism, and respiratory viruses, hearing loss (still WAITING for him to be well enough to have ear tubes in) and his newest health issue asthma. Each time he got sick it was like we hit another speed hump on the road of acceptance. We went on to survival mode and would do what we had to, to get him better. But then he would get well again and instead of feeling joy I often just felt exhausted and deflated and sad about Down Syndrome. Because, I would think we wouldn't be going through any of this if it wasn't for that extra chromosome. (which I know is not really true).

One of my biggest issues is the fact that we are THAT family, you know that family with the kid with Down Syndrome - at playgroup, at school, at soccer, at music. And I wondered why did that bother me so much but in a moment of clarity I have realised that this is about me.

As a child I grew up in a small town (just 300 people) our family was hardly "normal" with my Dad having a mental illness that he self medicated and everyone in town knew it and I think was afraid of him. I grew up with a great deal of shame, powerlessness and anger, we where That Family.

As soon as I could, at just turned 17, I left that town and started my own life and it was going to be "normal".

And it was .......until Down Syndrome and now I feel right back where I started out, now I feel like we are That Family again, ironic isn't it. So anyway realising this deep connection with my past and my childhood desire just be normal has been such a release for me, I realise it has what has kept me "in grief", I acknowledge that wanting to be "normal" will probably be a the thorn in my side, my weak point. But in that moment of realisation and since then, I have felt lighter, felt much more at peace with Owen having Down Syndrome, because it just is and yes it is who we are, we are - That Family - the one that loves, adores their kid with Down Syndrome.

So, back to grieving and acceptance, now I realise that this process is determined by the experiences of my past, my family relationships and my childs health and possibly a thousand other variables no wonder it is taking some time.

Three little pigs

Meal times are never just about eating !

Beach Photos

So good to be back home, we had a great week at the beach.


We all just loved the sunshine and seeing trees in full leaf again!


We took Owen and Cy's little car down the beach it was a big hit with both of them.


These perfect little spheres of sand are made by crabs at low tide and cover the beach.



Owen LOVES to eat sand I had to distract him with other things to play with the whole time we were on the beach or else he was shovelling it in by the fistful.


We went to the butterfly house - it was very humid and very warm inside, Owen looks ready to pass out.


We stopped at the markets in Bellingen and met John (who runs the curry stall there) he recognized Owen (well his 47th chromosome actually) right away and quickly ran to get his son Anun who is 9 and who also has that something extra. It was fantastic to have that instant connection again ! Owen wasn't sure about the beard ! you can check out John and his family in this documentary taken for ABC last year.



When in Coffs Harbour everyone gets their photo taken at the Big Banana - Australia is littered with Big Icons they are pretty wild but everyone always get their photo taken beside them its just what you do.

We had a great time the weather was kind to us and I feel ready to take on this (very busy term), and Christmas is looming.......eek

beach break

So we are off to the beach 7 days of sand and surf - can't say sunshine because it is forecast to rain nearly the whole time we are there! I can't wait to see each of the boys reactions to the beach. We live about 2.5 hours from the coast but havent been since last November, I love that we have a whole week to enjoy it "see you " when we get back

Car Track

We have this little ride on push car at home and I sat Owen on it but he couldn't get it to go, then remembering our crawling track and how the slope helped Owen to learn to crawl I took the little car out to our (overgrown) front path which has a gentle slope down to our frontdoor, and look what happened.


At the beginning did you see him sign "GO" ? (we use AUSLAN - Australian sign language) it is his new sign. Sorry the video goes a bit longer than it needed to and Cyrus pushing the car back over Owens toes ! - I don't know how to edit videos on our camera).

surf, sand and no earplugs

Owen was scheduled for ear tubes (grommets) today.
Yesterday I took him to the doctors just to check out his chest because he has had a wet cough the past 2 days, and I know from his heart surgery that a grotty chest is a big no, no for anesthetic.

She listened to his chest and it was clear (what a relief) BUT then she looked in his ears - she couldn't see the left drum, the canal is still too tiny but (and for the first time) she could see inside the right one and see the drum and it looked NASTY. So the surgery had to be cancelled, he has to take a course of antibiotics to clear up the infection and surgery is re booked for one months time.

Silver lining is ------- he will be month older and the ear canals can grow just that little bit bigger (more likelyhood of being able to insert the tubes) and we can go on our beach holiday in early October and NOT worry about the sand, surf and ear plugs.

Play to Talk

This is a great post from Pia about Play to Talk and Communicating Partners the the technique I have been using with Owen and also Cyrus (he had only 30 words at 2 years old) now 10 months later he now has hundreds and we are even getting a few 4 word sentences ! You can click on Pia's links to join the Communicating Partners yahoo group, the group is a very supportive, encouraging and insightful with great tips and support to help parents to connect with their late talking children.

connecting the dots

I have been acting like a crazy woman lately stopping "strangers" in the street to introduce myself, my family and baby Owen. But we all have a common denominator because these "strangers" also have a family member with DS. At the newsagent I stopped mum Gale and her 28 year old (gorgeous) son James (who had just had highlights put through his hair) Gale took one look at Owen and just melted into familiarity and warmly swept him up for a cuddle. James was a little unsure of cuddling Owen (fair enough James those teeth are just as menacing as they look) it was wonderful to hear James talk about Masterchef, football, ten pin bowling, saving his money to buy a house and that he had just been to his Drama class. It was awesome to meet a family with an older son with DS, Gale had some sage words of advice about inclusion in school and we exchanged phone numbers. At Macca's on Saturday afternoon Col told me to turn around and look at a very cute little girl poking her head over the top of the booth seats and smiling at him - she had Down Syndrome too ! ( in our town Owen is the only child with DS under the age of 10 ! so seeing another young one with DS is a big deal to us. I turned around to look at her and then looked at her parents who were looking right at us. I did this little charade of acknowlegement and with big smiles crossed the room to talk and introduce ourselves. Glenn and Janeen had two of their daughters with them Tian is 3 and has recently been adopted and Olivia is 10, both are just beautiful, both have Down Syndrome. What a great family, full of laughter and hope and joy. Olivia is just inspirational - reading novels, writing, spelling, going to sleep overs and birthday parties and managing her Gluten Intolerance herself -by always checking with an adult if the food at a party is gluten free before eating it! WOW, she just blew me away but it was her beauty that rocked me. Tian is just a sweetheart, she is blossoming in this family. I left Maccas smiling like a lunatic because it is wonderful to be a part of the Down Syndrome family - I have longed for a sense of connection and community all my life - and it took the 47th chromosome to find it.
Thankyou Owey, you are my light, love you baby, MUM XXX

my boys health update

Randall's appointment with the Pediatrician went well and he is growing at 1cm per month. It seems his white cell count was low due to a recent virus and the thyroid and phospate levels were due to a growth spurt.

Cyrus had an ENT appointment on Friday he has had 3 monthly check ups due to fluid in his ears. He currently has glue ear and may need grommets (Owen is getting having them put in in just 24 days time)

Owen is starting to crawl on hands and knees just a few "steps" and then he flops onto his belly but I think he did about 4 of those steps in a row today and it made my heart fill with joy.

Today there is no struggle with the 47th chromosome, none at all, infact there is just happiness and love for this lovely, perfect, funny, cuddly little man.

struggling

Do you ever find your self struggling with the 47th chromosome?
I am finding it difficult at the moment, I am not really sure what has set me off, maybe its the delays, maybe its some of the quirky behaviour, at times I feel I am just not equiped to do "this"?

Also there are a few other things going on at the moment, we have just found out Cy needs glasses (very long sighted) and Randall has swollen lymph nodes and got some strange results in a blood test (white cells, thyroid and phosphate abnormal) so we are off to the Ped today for him.

Sometimes I think you just don't get paid enough to do this job - being a mum.

how do you teach sign?

someone recently asked me how did I teach Owen to sign? I have not had any training or support, I haven't read how to do it, I have just followed my own instincts and I wonder what others do ?

When Owen was about 8 months old I started reading to him before bed and I read the same 2 books every night they are a really simple one animal/item per page


I went on to the Auslan website and found some of the signs for the animals or items in the book at first I just did Dog and Duck and Cat. I read the book with Owen sitting on my lap, the book in front of us and use my hands over his and make the sign or I would do the sign with my own hands (for example duck is hard to do with a hand over hand).

When he watches Playschool or his Your Baby to Read dvds, or when I sing nursery rhymes I would do the same thing, hand over hand signing.

I really think for Owen it was the sensory input that was most valuable in learning the signs, I mean I know the visual is important but I really think it was feeling the sign that was most vaulable. Now that we use sign to communicate Owen can learn a sign very fast (recently he learned "poo" in one day. At the moment I am not learning any more new signs I have hit a hump, we know about 40 and it meets our needs in the day. Owen also sayes just 5 or 6 words I am also working on him verbalising more and sharing baby babble back and forth with him.

Cheeky Monkeys and a Hat

There are three cheeky monkeys in our house but it is the middle monkey that is the most mischievous, I love the first photo where you can actually see him plotting to take Owens beanie and the last photo you can see his delight at Owens reaction!

MIA

No posts and no photos recently because I have been sick with vertigo for the last 10 days. It was probably a virus but I realise that this crisis in my health is probably a reflection of the constant day to day stress I put myself under with little time for friends, time out, hair appointments etc. The vertigo was completely debilitating all I could do was lay in bed, if I got up I was staggering and bashing into furniture and the walls and the nausea was overwhelming. Randall was calling me "Future Mum" - because I would have to have someone to support me to walk to the toilet! My partner Col looked after the boys, the house, the cooking and me (and I am a pretty awful patient), but he had to go back to work last week so my mum flew from Adelaide to look after us all, she left yesterday. I am running on about 90% of normal just the ocassional dizzy, nothing debilitating. Back to fulltime parenting tomorrow !

Here comes the sleep train

One nap a day has shifted things big time.
Owen is waking just once a night now and woke at 6.30 this morning !!! and I can put him down at nap time without nursing him (he is just so tired he falls asleep with just a little patting) YAHOO fantastic. I feel a million bucks.
Its a job to keep him awake at 10 o clock but with a quick snack and a drink he can get through until about 1130 (he is having lunch at 11am. I moved Cy's nap too now his going down at 12pm (was 1pm) and waking at 2.30pm an hour earlier which means he is sleeping through the night without the antics.

Owen has found EYES are for poking ! I ask him where are your eyes and he points to my eyes and then his own eyes (well sometimes its his ears) and he goes back and forth back and forth sometimes poking both my eyes one after the other as if to say, and you've got two of those ! Very cute. Photos to follow

urrrrrgh to sleep to dream

Owen is not sleeping well
two weeks ago he was waking every 1.5 hours at night then it stopped YAHOOO just when I was threatening to do some "sleep training" (read night weaning).
But the new pattern he has adopted in no fun either, sleeping till 2am then he has a feed back to sleep then awake at 4 am sometimes for the day sometimes I can get him back to sleep for another hour so our day starts at 5am - it is beyond a joke.
But to top it off his big brother Cy is waking at 2am and STAYES awake until 4am (around the time Owen is waking for the day).Cy talks and giggles and plays with his teddy's for the whole 2 hours, he doesn't call out for us or cry, just wild laughter and voices (which would be cute at any time after 7am) His bedroom is right across the hall from ours and it is so hard to sleep through the antics well I speak for myself because this is when Owen is sleeping soundly.
The last few days I am starting to feel really depressed even now I sit and type in my PJ's (Its 1pm in the afternoon).
Today I am going to give Owen just one day sleep, because maybe he is getting too much sleep in the afternoons? So my plan is to have him have just 1 sleep each day for a few days to see if it improves things or makes it worse (heaven forbid).uuuuugrrrh I am just so exhausted.

Honey Bear

Our speech therapist did a drinking assesment on Owen about a month ago and was happy with the tiny amounts he was taking from an open cup. I wasn't happy the amount he would take was just so tiny. So it was time to hit the blogs, I saw so many children having success with the Honey Bear, it was time to order one.

I had to order it through a distributor in Brisbane and after only 4 days of squeezing the bear - squirting water into his mouth and me making exaggerated slurrpy noises with pursed lips HE GOT IT.

He can now drink good amounts from the bear instead of having to rely on breastfeeding alone (I feel more hydrated already !).

we have movement !

Owen is on the move !
He is creeping forward just a little bit just 30cm or so but in combination with sliding onto his tummy and sitting up again he is managing to move about the room. This is the first movement he has had since he was rolling, which he only did for about 3 weeks before rolling off the bed he was 10 months old, (thats 4 months ago !).

As a total bonus I have noticed his habit spasm is hardly happening at all Yippee.

Speech, Sign and Surgery

Owen sigining 'up' (we're going up, we're going up, as high as we can go, were going down, we're going down, we're going way down low, up up up up up up and down down down down down SPLASH (goes the boat in the water)

Owen had his first speech evaluation last week and I think they were impressed with his signing, I haven't told them he has 30 signs and I haven't told them that he is also sight reading from the Your Baby Can Read DVD's http://www.yourbabycanread.com/ words like dog, cat, tiger, no, head, clap, wave, arms up, point, baby, swing, elephant. Its pretty wild and I feel like I would be looked at like an over involved parent but honestly he has learnt to read from just watching the dvds. And he has learnt most of the signs from singing songs and nursery rhymes (there is not much else to do when you can't creeep or crawl !

Since he was around 3 months old I have been using the Communicating Partners guidlelines http://jamesdmacdonald.org/ and Owen learnt from early on that his actions were valid communication just as much as using his voice we did lots and lots of turn taking -like he would bang on the highchair so I would bang the table back and forth back and forth always with big smiles on our faces. It has been a very natural progression into formal signing from there. He started signing at 12 months old - eat, milk and duck and since then there has been an EXPLOSION of sign and 8 weeks later he has 30 signs/natural gestures ! Most have been learnt through nursery rhymes singing and signing at the same time (like twinkle twinkle little star).

Two weeks ago he started making a making a new sound at the back of his throat it sounds like gccggrrrrrr, after a few days I wondered if we could turn it into a word - so every time he said ggcccrrrr I would say CAR to him and sign car or hand him a toy car or point to our real life car - he learnt VERY quickly, in a day I think, we take 3-4 turns and I am now trying "car, broom brooom" to extend him by 1. He also has "words" for cow (mmmmmvvv) and tiger (grrrrrr), mouse (eeehhh eehh), light (ite ite) and look (eeeeeeggrrk).

He used to babble alot until he was about 10 months old when he suddenly stopped, at first I was worried then he started making other sounds (not babbling) and I didn't worry about it anymore. But then he started signing and I noticed that he was signing "Duck" when I said truck, signing "Low" when I said Go, and would moo like a cow when I said Karl (a character from a tv show) it was obvious to me that something wasn't right. Outwardly I would say it was very hard to tell that there is anything wrong with Owens hearing, but through his signing I could see he was mishearing (a new benefit of signing - hearing assessment?).

Today we went to the ENT to follow up on some hearing tests from a fortnight ago and Owen has "moderate to moderate/severe loss" and he needs grommets except - the private hospital where the surgeon does his operating from, does not have insurance to operate on children younger than 18 months of age. So can you believe we have to wait for another 3 months ! But it might be just as well because Owens ear canals are SO TINY that he could not see the whole ear drum clearly and there is a risk that he may not be able to fit grommets to such a tiny ear drum - another 3 months of growth maybe just the thing.

I know that lots of typical kids have grommets but I did feel it is another "victory" to DS, its a funny thing to think I know. And I felt a bit teary that Owen has to have another operation it brought back all the nervous uncertainties and memories of his open heart surgery. ahhhh well , the count down is on for surgery - September 29th,- in the mean time we have to talk louder, and directly to him because he can hear us its just that it is like he is wearing a set of ear muffs (or a bubble hat perhaps?)

Backstroke

Special Olympics 2032 ?

Celebrity Status

Owens dad (Col) went to the shops last night to get a few things for dinner, he wasnt' gone long he took Owen with him. And for the first time he really noticed people staring at baby Owen and then looking away - You know the look I mean.

It hurt his feelings, it made him defensive, it made him feel the weight of social judgement of Owen and of himself.

I call it our "CELEBRITY STATUS" people seem to notice us now and some strangers stare in a "trying not to stare kind of way" and when you meet their eyes they quickly look away. I imagine its what celebrities face when they too nick to the shops for milk and bread. Yes its hard to get used to, I know with time we will develop thicker skins, with time we will become immune to the stare or we just won't care anymore - imagine that !

In the mean time at least there's no photos to document our bad hair days, tracksuit pants and muffin tops !

Crawling Track Ideas

Owen has been sitting for 6 months now but has not made any big move toward creeping or crawling.

Now none of my kids have been especially motor motivated, they are more the "observant, nerdy, book reading" types. But Owen is bored of sitting and once he has thrown everything out of his reach he whinges and grizzles until someone gets him something else to play with !

I first read about a crawling track on Unforseen gifts http://unforeseengifts.blogspot.com/2010/04/how-we-built-our-crawling-track.html

and took a leap and made one.

Now at first Owen could only push himself down backwards, after a week or so he got the creeping forward motion going (with his favourite toy at the bottom for motivation) things were going well for a few weeks but then he would just roll onto his back and refuse come down the track.

Anyhow today I went to http://trisacharm.blogspot.com/2008/11/patience.html and in it I saw Joaquin looking up at his wall as he was coming down the track so I had this idea to put the track next to the fridge so Owen could see and play with he second favourite toy as he was coming down the track and had his fav. toy at the bottom. SUCCESS he is staying on his tummy right to the bottom.

see why I love the DS blogging community so much !

Sitting pretty.

Owen is sitting up on his own from lying down ! (adjusted) he is 13 and a half months old)

And I missed it the first time
I had laid him down on the floor and turned away to start dinner and when I turned back just a few moments later there he was sitting up and giving himself the biggest, happiest, clappiest cheer ever.

In the past three days he has worked and worked so hard and has it almost perfected, it is such a huge effort for him - damm those short arms - he still cheers himself everytime !

'xuse the cheeky video !

Baby Wearing

I have an Ergo baby carrier nowas Owen is nearly 11kgs ! I have been through 3 different carriers intially he was just in my arms then he went into a sling then a front pack with his legs dangling down andnow the ergo (his legs wrap around me I have carried him all his life - but a lot less now that he can sit and play with toys.

When he was born 6 weeks early he used to have apnea events, he would turn ahorrible dusky blue but I found that by wearing him he would not have theseturns as often and if he did I just had to jiggle him and he would remember to breathe.

Then when he was 6 weeks (adjusted) he went into heart failure I carried himall the time and we slept together - I think it was comforting for both of us. After his open heart surgery he got RSV and we were in and out of hospital (between july and october last year) but I found that being upright in thebaby carrier helped him to shift the mucus in his lungs and I could keep aclose eye on how well he was breathing and if he needed ventolin.

And the baby carrier has allowed me to keep up with Cyrus (they are just 16 mths apart).

I think there is just so much sensory input when you wear a baby -the movement, the deep pressure and warmth of your body on theirs, the sound of yourvoice and heart - good for any baby but especially for our baby's with DS.

I am a convert (can you tell) LOL. I have never worn any of my other babies but I wish I had.

Tai Chi Hands

Owen he has what the Ped calls a "habit spasm" its like he gets a moment of too much tone if he is overexcited, overtired or frustrated - he rolls his eyes to the top of his head and stiffens his legs and arms and groans - it is somewhat upsetting as he is doing it alot at the moment. He has also started rocking when he is sitting, he has his legs out in front and hands on his thighs and rocks. He also loves to look at lights and loves to watch his hands and it looks like he is doing Tai Chi.

I have never seen or heard anyone else talking about strange behaviours of their kids with DS and I worry that Owen has something else going on like autism.

In other areas (except gross motor skills) he is progressing well he has over 10 signs, is vocal and communicative and has reasonable fine motor skills. How do I manage these behaviours - should I interupt him when he is doing it or is that rewarding the behaviour ?

I have been wondering do all or alot of babies with DS have these strange behaviours? I have heard it said that people with DS can have autistic like behaviours without being autistic and still be very capable and independant - just quirky.

I waver between not worrying about the "quirks" and being in a panic about them - it probably depends on how much sleep I have had !

Opening Doors

Owen is winning everyone over, our family, friends, and strangers he has opened doors in peoples hearts that can only be opened by this soul, it is so beautiful to be apart of and observe, it is transforming.

The Pendulum

I have been busy posting about the past year trying to catch up but reading back through my posts one thing is missing.

Its the emotion of coming to terms with Down Syndrome.

This I know - everyones journey is different. Ours has been affected by Owen's health which meant the grieving process kept getting put on ice until each crisis was over.

At first I swung between love and grief, acceptance and denial and I will admit it rejection. I thought about adoption - give him to someone that WANTS to take this on, because I thought "I can't DO this", I cried, I sobbed every day for 5 weeks after Owen was born.

We had little support from family and friends who also struggled with Owen having Down Syndrome.

Then we found out that Owen's heart needed to be fixed and all I wanted was for my baby to live, to sing to dance to feel love and to be loved. I realised how much I loved and wanted THIS baby.

And grief is diffiuclt you know - its like a pendulum and just when you think your okay you are totally in acceptance without warning you can be swung back into those dark sad feelings of grief.

That pendulum has swung back and forth over the past year, but the arc is getting wider and wider with more time spent in acceptance and love than grief.

As Owens personality comes out, as he grows and he progresses and I learn to reorganise my thinking, to get a tougher skin, to get educated, I am coming to realise that IT REALLY IS OKAY, I can do this - (look what we have done already).

Shining bright

Today is May 27th 2010. A year ago today Owen's heart was repaired.

attached is a photo of Owen wearing his heart beads - every bead represents the procedures he had during his hospital stay (needles, canulas, blood tests, xrays, drains, scans, THE operation and the most beautiful, colourful, heartshaped bead for discharge from hospital).

We are so grateful that his star has a chance to shine.

RSV

We finally left Westmead and came home a full month in hospital, so wonderful to be home again but .........................

next up for Owen was RSV

its a very nasty respiratory virus for a person that has just had cardiac surgery - though better that he got it after surgery than before surgery when the outcome could have been too awful.

Instead the RSV put him in hospital here in our home town for 10 days and he needed O2 (his sats were 80% when we first arrived in hospital)

RSV also sensitised his lungs so that every cold virus he got after that put him in hospital between July and October we were in 5 times for around 5 days each time.

Finally at the end of October we came home and the weather cleared. During this time though Owen was THRIVING ! He stacked on the weight and grew like a weed - all the energy that was going to his heart was now going into growing !

Hypothyroidism

another update
Owen was moved to the cardiac ward 3 days ago, his heart rate was too slow and so the external pacemaker was still attached and initiating the beats of his heart, plus naso gastric tube, oxygen and cardiac monitoring.

But yesterday the NG tube and oxygen was taken off and he was allowed to breastfeed whenever he wanted (the previous day he had his first breastfeed and he remembered how to do it - everyone is impressed it was a wonderful moment for me. I have longed to hold him, comfort him while breastfeeding. The pacemaker has now been turned off (for 2 days) and his heart has taken over - beating well.

So the plan for today is to take the pace maker wires out which are still attached to his heart (internally) and then my boy will finally be mine again, this is the final tube/wire etc to come out after surgery. He needs to have cardiac monitoring for 4 hours after the pacemaker wirees are removed and then that can come off too.

Things to worry about now are - his temperature is up between 37 and 38 degrees (they say they see what will happen if it goes over 38 then antibiotics will be started ) and he has low thyroxine levels and has to have a couple of scans to see why it is so low - checking thyroid function etc) He started thyroxine medication.


No word of when we can come home yet but I am thinking it must be sometime next week??
stay tuned.

Surgery

Adjusted (being 6 weeks early) Owen is only 3 weeks old when he undergos his heart surgery, in the cardiologist letter he wrote "I fear Owen will not make it to the next cardiology appointment". We flew to Sydney (a 9 hour drive from here) and took our little 17mth toddler with us but we were far from family and friends. I wrote this email to them after the surgery:

Surgery went well the surgeon was happy with the way things went he said the holes in his heart were very large and his heart had been working hard to pump his blood around, the valves he made using Owens own tissue were working very well.

Since Wednesdays operation he has been on life support but yesterday they took him off the paralysing drug and last night he opened his eyes for the first time - it is like he has been BORN again, we were so excited and he is responding when we say his name and talk to him he opens his eyes WIDE, its magic.

Probably the most shocking thing has been how swollen he is particulary his face, Col and I said that if there was a line up of babys we wouldn't have recognised him, they say this is normal due being on life support, not moving at all and the heart being "insulted" after becasue of the surgery. But now that he is coming off the paralysing drug and he is starting to wiggle and blink the puffyness is going away quickly.

Oh and yesterday he started having breastmilk all 2 mls and hour (now up to 6 mls this morning), and one of the chest drains came out whoo hooo (a big moment).
He will remain on life support today he is still having some trouble maintianing his blood pressure and he ison the pacemaker again today not sure why but that is a step backwards I guess overall though he is inching forwards. He is going very steady which we are really thrilled about.

We have moved to Ron Macs house which is fantastic we are very lucky to have got in it makes things alot better for us, everyone is very generous.

We are holding up, though at times it is very very upsetting and exhausting. There are SO many babies and families here going through a difficult time, we are not alone and we all support each other.

Okay well I have to go thanks to everyone we feel loved and supported.

Cardiology visit

HORRIBLE

Owen is in heart failure, his lungs are wet and he needs medication right away, he also needs surgery right away. The cardiologist asked us "did you know he had DS before he was born" I shook my head no, then he asked "what would you have done !!!!!!!!!!!!!?????" WTF!

We couldn't believe that he asked that, the gall of the man.

an email sent at the time to a friend:
Owen has one major hole and 3 other things wrong (complete AVSD) with his heart all which require surgery at Westmead.
The next step is a pre surgery appointment in Sydney, the cardiologist made is sound like the appointment should be sooner than later but gave no indication of a timeframe, I guess it depends on the priority of other cardiac patients in the state. We are shocked that things are so bad, we knew there was a problem of course, but his heart had sounded fine under the stethoscope until last Thursday when it suddenly became very noisy (the pediatricians words) and he also had developed fluid on his lungs making it hard work for him breathing. It is all so sudden when he had been doing so well.
He is on medication - a diuretic to reduce his blood volume to ease the pressure on his heart and lungs. He seems to being going just okay - he has had a cold on top of everything else.
Col and I have been very upset but have pulled together again and we are ready for the next step (daunting as it is). At every moment we just try to put as much love and (for my part) breastmilk into him as we can and we think, I mean we are pretty sure that he smiled at us - he has done it twice now (on different days) such gentle, peaceful little smiles - it melts our hearts !

Getting out of hospital

So the following days are a blur, trying to establish breastfeeding, Jaundice that made my baby so very sleepy that he needed a naso gastic tube to deliver breast milk to him and required hours and hours on the "Bili-bed" (much better than the overhead lights) , moments of apnea with heart rate below 100 and O2 sats at 60% (very scarey), an ECG of his heart which was anything but reassuring (an appointment with the visiting cardiologist was booked) BUT finally, finally we inched towards those doors of the hospital and home. And during that 7 days since his birth we also finally came up with a name that suits him
this is how we told family and friends

Brothers

My face was so red and puffy from crying hard but it was time to let the rest of our family meet our new baby. My first born son Randall was the first to met Owen I told him "We think the baby has Down syndrome" and he reached out and touched me and said "its okay mum he'll be fine, he's my brother and I love him". It was a naive yet perfectly wise statement a statement of unconditional love. That moment was so touching, so profound I will never forget it and it carried me through these early weeks.

Next was baby/toddler Cyrus's turn to met our newest baby, and of course there was Love so tender and unconditional, nothing but love for our new baby. You can see it here http://www.youtube.com/watch?v=96b6mDndeDE&NR=1

The open palm

After an hour or so of snuggling with baby Owen - I handed our newest baby boy to my husband and I had a flicker of anxiety as I thought he looked like he had down syndrome - This is what I saw from the bed (insert photo here) See his eyes a little turned up at the edges ? I asked my husband - do you think he has DS and he rolled his eyes and shook his head in a soft reassuring way. But when my Col left the room and a midwife came in I asked her - "this may sound like a strange question but do you think my baby might have DS?" and instead of saying "oh no your baby is perfect" she said "yes I do think he has some of the features". I sat still in the bed but on the inside I was running, screaming, shaking I looked at my new baby asleep in my arms, I remember thinking no, no no HE IS FINE .....

Then she opened my baby's palm....

and showed me the single crease in his palm, a very distinctive feature of DS (though not everyone with DS will have it).

Col wasn't back (he had gone to get the rest of the family) and the Ped arrived, he started to undress my newborn baby and pointed out (actually poked and prodded) all of our perfect baby's "imperfections". I was felt like I was dying and I was alone my baby lying undressed at the end of the bed like a petal torn from a flower.

Finally he said the baby has 6 out of 10 DS markers that is a strong indicator and we should consider a genetic test to confirm it. Col came back at that moment.

I can't describe the spin I was in, the hurt, the pain, the confusion and the rest of our little family had arrived outside and were waiting to see their brother and newest grandchild. For a while we didn't know what to do next...

The begining

I was 34 weeks pregnant and got back into bed after *another* toilet visit in the deep dark of night, when I felt a familiar pop (all three of my labours have begun with my water breaking). I laid there trying to ignore it, wishing it wasnt what it was, but after a few gushes and the bed starting to get wet it was time to admit that my baby was on its way!

The date was the 21st of March 2009 - which I would later find out is World Down Syndrome Day. My little chickee was 6 weeks early, he wanted to be born on THIS day the most important day of the whole year !

I had a Csection due to problems from my second childs birth and I remember just longing to hear the baby cry to know that babys lungs were going to be okay. And there it was - a long Bellowing sound - WHAT THE HELL JUST HAPPENED HERE !!

My husband and I had begged for the baby to be delivered onto my bare chest, I had read alot on baby crawl (see http://breastcrawl.org/video.html and we wanted to give this baby the BEST start. Since his lungs were in such good order the Ped. was happy for the baby - A BOY - to be put to my chest. I will never ever forget that moment...ever.

Owen stopped crying immediately and then under the cover of a blanket he opened his eyes and looked at me.

His eyes were SO dark so enchanting.

But there was something else too, it was his nose it looked....... well flat, like he'd been 10 rounds with Tyson it looked strange -

But those EYES they burned into me,

and then he started to kick and lick and suck his hands and I am sure if I had been able to move I might have been able help him to the breast but lying flat while I was being sewed up wasnt' helpful. I also noticed that if I took my hand away from his dear little head it flopped forward and so I left my hand there supporting him so his head didn't flop downwards,

Later I would learn that the flatness at the bridge of his nose and low muscle tone (not being able to hold his head up) are some of the indicators of Down syndrome.

In these minutes before we knew about DS we were so happy, so relived and so tired !
All that was about to change.

The first Year

Well wow, here it is - the blog at last. Acutally the hardest thing was thinking up the title !

I have been a HUGE fan of online blogs from parents of children with Down syndrome, they have helped me (unknowingly) through the grief of unexpected diagnosis, the harrowing experience of open heart surgery and they continue to inspire me and encourage me to expect the best of and for our baby with DS beautiful, wonderful, funny, baby Owen. And now I hope I can give just a little bit back to them.