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!

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.

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.

over vomit

starting to think about a fundo.
have been stubborn and not wanting it but am really over the vomiting and it may be really helpful for him. Will talk to gastroenterologist at next appointment about it.

Still need to get mic-key from stomal nurse at hospital- RED TAPE!!!!

AFO's

Had an appointment with an orthotists.
We just need to wait for funding for the AFO's
It is thought it will take 4-6 weeks.
Nathan will then get casts made of his legs and AFo's made.
Hope is this will help support his ankles so he can cruise around more easily.
In six months or so we will then get an ankle length version

EEG

Nathan had an EEg the other week. It came back abnormal but not sure of the cause of the small siezures he had been having. Hven't seen one for a while. Need to just observe and report back to paediatrician if we see any eyelid flickering or eye rolling while he holds his breathe

Agghhhh

After such a good start with the hearing aide we are now struggling to keep it on. He is loving to pull it off and thow it wherever he can as far as he can. I have heard stories of kids with DS throwing their hearing aides out of bus windows. At least Nathan is not riding on a bus by himself and he can't get down the car window!!

Hopefully this stage won't last too long or his ears will improve.

Hearing Aides

Nathan got his first bone conducting hearing aide on monday. He has been so good wearing it all the time, apart from when he is sleeping.

He seems to be more vocal and is loving making noise by banging anything he can get his hands on.

Latest loves and things that bring a smile to my face: Pulling tissues from boxes, Pulling Nappy wipes from boxes, Building up speed doing the 360 degree bottom spin, Reaching out for cuddles with the grandparents

New signs: Baby, No deal!!, Working on pointing fingers

Turning up the VOLUME

It was so nice today to get out of the house and go for a walk. I think Nathan enjoyed the fresh air. Even though it was cold and windy he was snuggled up in his pram.

This afternoon we are off to the Australian Hearing centre to discuss hearing aids. Nathan needs a bit more volume so he can hear the world around him more clearly. Bit annoyed that the hearing centre we were going to didn't refer us to the Children's. I am glad when we had our recent stay he was able to be seen and be tested while he was having his afternoon sleep. So we'll see how we go. I have no idea how he will keep them on or in??