An update on my boys

Thought I'd do a little update for anyone interested :)

Tristan will see the dietician next week to discuss where we go from here. She's not happy about the bowel problems or the Dr. We are going to be discussing his diet (obviously) but also to see if there is a need to continue on the pediasure formula or if we can switch to normal formula or even cows milk finally! I'll get him weighed on Friday to see if he's gained or not. He will see the CHN afterwards for a general check and to book in his 18 months developmental assessment and also needles (shudder). He's also participating in a weekly speech group session.
He is now saying "o-oh" (occasionally) when he drops something or falls over, VERY cute! And he has also started waving most of the time now, he holds his hands in a fist and moves the fingers like he's holding onto a ball or something, but that's close enough for me! He is also pointing at things he wants now too. Not much else happening in the communication/language sector... a little bit of random babble here and there but not even daily.

Brendan has audiology on Friday and his Autism Spectrum Assessment in Dec. He is seeing the OT and Speech fortnightly and also doing a weekly group speech session. Nothing else to really report on, he's plodding along at his own rate.

Thanks for the update and it's good to see thier problems haven't been swept under the carpet.

Re the speech, keep talking & reading to them. My grandson was a very late talker, just turned 4 and is now starting to talk where you can understand him. This has made a big difference in his frustration levels.

Keep us posted on how your next visits go :)

Thanks xx

I read to them, commentate on my (and their) daily activities, model their language (which I often do when speaking to adults, I forget to switch to adult talk!) and a whole range of other things.

Brendan has sensory processing disorder, hearing and ear problems which doesn't help and I'm not concerned over Tristan, he's only 16.5 months, and I think he's taking it all in... he's more of one to sit back and watch things before doing them so I think he's doing the same for his speech :)

I was a prem and also had speech issues...talked very late (and seldom) and saw a speech patghologist frequently.

I'm sure they will come along fine with their speech...watching and listening are the first steps! He is probably understanding a lot more than he lets on, despite the sensory issues.

Brendan isn't just delayed in speech and language, he has other issues going on to, but thank you for your words x

Another quick update on Brendan :)

On Friday (yesterday, 5/11) I took Brendan down to Perth to see the Audiologists. Brendan was such a champ, he was so well behaved and has graduated from needing two Audiologists to just one! (people that know Brendan know that this is a HUGE thing) The hearing test only took about 30 mins whereas before it took then more like an hour because of his behaviour. I'm just so glad that he was so easy to work with yesterday, but then they know Brendan and Brendan knows the procedures etc now so that helps.

Anyway the results...
Moderate/Severe hearing loss in his right ear and mild/moderate loss in his left ear. At this stage the only permanent damage is very mild (they tested his nerves) however without surgery to insert grommets, it will become a permanent hearing loss. He has been waiting since December last year to see an ENT specialist and is unlikely to be seen before June 2011, all because a referral got lost wasting us 7 months of precious time. The Audiologists work in the same building as Brendan's Developmental Paediatrician so they are going to have a chat with her and get her to talk to PMH to get him seen sooner. *fingers crossed*

Brendan has shown a hearing loss in both ears since his first hearing test (not birth one) however before it was only a mild/moderate loss.

We go back in February.

:hug: I dont have any advice or experience but I do have one of these :hug: and another for you son :hug:

You have had such a long journey and I now it's still ongoing. But it is great that you are seeing so much progress :hug: I am sure that you appreciate the little things even more now. Best of luck with seeing the ENT earlier, and with the dietician and CHN.

All these medical appointments must be very tiring for you. How long as it been since you've had a week without a medical appointment of some sort? I hope that things settle down soon for you.

:hug: You are doing such an awesome job with them both Sally.
There's no other ENT you can see? It took us forever getting DD1's grommits sorted too, eventually we got to see someone else 3 hours away & had the surgery done there instead.
Good luck with it all & keep us posted :)

Thanks guys xx Unfortunately, without going private, there is no other ENT we can see. Perth is it. I'll just keep on their back as will Brendan's speechie and together we will keep his Dr on their back too. The paediatrician has quite a bit of power so she should be able to push it through too, especially given his latest hearing report!

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All these medical appointments must be very tiring for you. How long as it been since you've had a week without a medical appointment of some sort? I hope that things settle down soon for you.

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It does happen, just not very often! School holidays are usually when it happens as the speech therapy group only runs during the school terms :) It does get a bit much sometimes, and I can take a break from it if I need to, but at the end of the day all this hard work now will do the boys so much better. It's not really a lot of time when you look back, most appointments are only 30mins. And thankfully I don't have to travel all that far. The local hospital has Speech Therapy, Occupational Therapy, Dietician, Physio and the CHN all in the one block. A bonus is that the receptionist knows us - easy for making appointments!

Feeling better today than I did on Friday, I was a bit shocked and upset about it all.

Thanks again xx