2 day stay

Nothing was staying down so after a trip to the gp a call to ace program at rch we made our way to emerg. dept.
We stayed two nights in an iso room as not sure what the cause was. At the moment we are on pump feeds with minimal formula and gastrolyte to make up the rest. thought we were going well today until we had a fountain shoot out as I did a nappy change. there were tears. all that time to get it in (50ml/p.hr) and it flew out. oh well back to gastrolyte. he'd only had 250ml formula today.

Hubby also came down ill last night. guessing its the same thing. At least its not a blockage.

eye test

eye test was all good. We go back in one year unless eye turning becomes more regular or gets worse. I'm very pleased. Glad we have accesss to all sorts of things to help with sight, hearing, walking, eating but sometimes it's nice to hear come back in a year.

Down Syndrome Awareness week 08

Down Syndrome Awareness week is this week. This morning we attended a morning tea to celebrate 30 years of Down Syndrome Victoria. Much has changed over the last 30 years as far as opportunites for people with DS. Hopefully much more can change over the next 30 years.

You can visit DSV website for more events, articles, research etc.
www.downsyndromevictoria.org.au

Dianne Tymms, who is in my DS support group, wrote an article in this months Melbourne Child magazine about her twins, Louisa and Harry. Harry has DS.

Specialists

For those who are interested in who we see if you are looking for a specialist:
Cardiologist: Michael Cheung RCH
Respiratory: John Massie RCH
Gastroenterology: Tony Cato-Smith RCH
Endocrinology: Margret Zacharin RCH
Opthamology: David Mackie RCH
Audiology: RCH/Australian Hearing
ENT: RCH
Physio: SCOPE
OT: SCOPE
Speech: SCOPE
Teacher of the Deaf: Aurora
Hearing Impaired Early Learning Group: Aurora
Orthotics: Orthotic Innovations Surrey Hills, David Philips
Paediatrician: Bill Capell
Dietician: Box Hill
Stomal Therapist: Box Hill/RCH
Osteopath: RMIT Clinic, Paediatric Specialist: Nahla
GP
Down Syndrome Victoria: My Time Parent Support Group

I guess this is why my calendar is pretty full!

Do the Shuffle

Nathan is on the move. He has worked out how to shuffle on his bottom. It looks like hard work. He basically lifts his legs up, while seated, and splits them out wide and scoots forward. There is an awful lot of heel banging that goes on and it is inch by inch progress. But he reaches his destination. At the moment he only moves about one metre. I'm sure as he adjusts and masters his shuffle technique that he'll be travelling greater distances.

http://au.youtube.com/watch?v=Z9TpNrYfxes

AFO's

This morning we went and picked up Nathan's AFO's. They are his jungle legs as they have prints of jungle animals on them. The orthotists took before and after pic's of his feet with/without the AFO's as he was saying there is so much difference. He is hopeful that Nathan won't have to have these ones for too long (6 months or a bit more) and then he can have shorter, ankle length ones. He is pretty sure he will always need some kind of additional support for his feet/ankles sue to his low tone.

Nathan was very good when we put them on him. We cheered a lot and he had a big smile. We'll see how we go over the next few weeks. Orthotist would like us to work up to 8 hours a day. Just have to keep an eye out for any red patches that don't clear after 30 min or so, any blistering or callouses that may form. If this happens we go back for some adjustments to be made.

Just need to go shoe shopping for shoes to fit.

Football Grandfinal Day

Aunty Krissy, Nanna and Grandma are cats supporters, Aunty Bec and Poppa are Hawthorn supporters. Hubby goes for Carlton and I cheer for Geelong, Hawthorn and Carlton in no particluar order. Who will Nathan cheer for?

On Grand Final Day he was dressed in Cats attire as we went to Skilled Stadium to watch the final. He didn't cope overly well with the noise so it was probably a good thing that Geelong didn't score too many goals! So most of the day was spent sleeping and clinging on to my husband or myself.

Next week we are off to Waverly Park for a morning tea to celebrate 30 years of the Down Syndrome association. Hawthorn Footy Club are community partners with DSV. So Nathan may don the Hawks colours yet!

picnic afternoon tea

tears

For the last month Nathan has been extra sensitive to any loud, high pitched or sudden noise. Any of these set him off into tears and extreme clinginess. Babies crying, toddlers screaming, plates clanging, toys banging the list seems to be growing. It doesn't seem to matter if his hearing aide is on or off. It is extremely difficult as in most of the places we go and the groups that we interact with toddlers and babies are present. Toddlers generally don't like to share toys, toddlers fall over or bump heads, toddlers squeal and cry. It seems we get over one incident and then another child will squeal or cry and we begin again.

Nathan was very sensitive to loud noises when he first came home from hosiptal but he has greatly improved and it seemed for the last year it hasn't been an issue. I am not sure what has brought on this behaviour. Hope it doesn't last too long.

videofluroscopy

We had a videofluroscopy done yesterday at the RCH. The plan was to check that nathan is safe to be eating and drinking and that he is not aspirating. I was 99.9% sure that he is swallowing ok but as I am after help for his eating I needed to get this done.

I took quite a selection of food with me to hopefully allow for him swallowing at least one of these things. Once the barium was mixed in the puree became quite thick. In order to get the right consistency I had a taste. It was really chalky and stuck like grit to my teeth. I was unsure he would swallow anything after tasting it myself.

He did really well. He was hungry as it was after 2pm by the time we had the test done. He had several mouthfuls of puree and a drink of milk mixed with the barium. We had a couple of accidents where he hit the bowl and barium and puree went all over his face and chest. It resulted in a good couple of swallows that were caught on the x-ray. Again when he was having a drink he moved suddenly and we ended up with Barium all over his top and down his chest.
The results were good. His swallow is good and we can keep feeding him what we are feeding him. Now I just need help to keep his mouth shut and stop his tongue poking out the food.