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.