Busy day with appointments

I had a hectic day yesterday, but here I will just talk about Raphael's appointments.

In the morning we had a consultation with a physiotherapist with lots of standing and walking practice. Handling uneven ground and very small steps is the next objective for him now. Also we will try throwing objects while standing up. I think we will be able to find a good game of throwing ping-pong balls at each other while standing.

He is confidently walking with a trolley that I hand customized for him. I added swivel wheels to the bottom of a normal child's walking trolley so that he can swing it around on the ground easily. I made it with some old bed wheels which were quite high and I was planning on going to buy some lower ones becuase initially I thought that it would be too unstable. But now looking at it, I am happy that it is not rock solid as it makes him practice his balance skills more and not just lean on the trolley all the time. He loves it and he seems to be walking with it all the time so I am happy that I spent the time on the modifications.

Later in the day we had an ENT appointment to book in his Adenotonsilectomy surgery for May when his normal ENT returns from being away. One of his grommets has probably extruded (fallen out) and is just sitting in his ear canal. Apparently it can take weeks for a grommet to travel down the canal in normal conditions but putting his hearing aids in all the time might be perpetually pushing it back up the canal and not permitting it to fall out by itself. When he is under anaesthetic for his surgery in May they will have a thorough look and see if they can just be taken away they will also look for any more sign of "glue" in his middle ears.

We also had a meeting with a home care nurse about his CPAP mask. It is starting to get too small and it is tricky to get on him at night without obscuring his nostrils. We had tried a larger one but it gave him a big blister on his cheek. We will try taping up his face with soft tape and giving the new mask another go tonight but I am not confident in succeeding with this.

We were also planning to see one of his intensivists but she was stuck in an emergency case so we abandoned that plan and will proceed without the consult until we exhaust our current CPAP ideas.

Early learning

My wife took Raphael to Early Learning this morning I believe that the general advice was that the Physiotherapist was happy with Raphael's development but the OT (occupational therapist) thought that he was lagging quite a bit.

The problem with his fine motor skills might be becuase other children his age are picking up small pieces of food with their fingers to eat but of course he doesn't get this experience; he can't even eat mashed potato, let alone a whole sultana. So we are going through our toys looking for things with small things to grab hold of. Of course we can't just give him tiny things because of the risk that he might put them in his mouth and choke on them. The only thing that I can think of at the moment is baby puzzles that have the little knobs on the pieces to pick them up by.

My wife believes that Raphael has made attempts at verbalising a few words:
All done: "Ada"
Zài jiàn (Chinese for goodbye): "Dyadya"
Gěi: (Chinese for give): Ge

She claims that the evidence is that:

• the sound is approximately correct
• he has said these things more than once; and
• he says them in conjunction with sign language (or action in the case of give)
  

I think that Annie is still being a bit optimistic about this being speech. I suspect that this might turn out to be another "head scratching incident" as he has not signed mummy in a very long time. But regardless of this we will use his sounds back to him (and with the correct pronunciation) to reinforce this behavior and with any luck he will learn that he has actually said an understandable word and not just a coincidental grunt.

ELT consulation

Raphael went to an Early Learning Tasmania session today with Annie. Annie said that he was a bit bemused with the six or so women with varied specialities giving him their full attention.

• General teacher
• Vision and mobility specialist
• Speech pathologist
• Physiotherapist
• Occupational therapist
• Session recorder
• and of course mummy
  

Calvary Health Care Children's Therapy Services (CHC) first visit

Annie took Raphael to his first CHC appointment today. At this visit there was a social worker, physiotherapist and occupational therapist).

They all had a short chat about Raphael and then put him on the floor with some toys to see what he could do. After some prompting and testing Kylie said that:

• he is demonstrating some problem solving skills which is better than what she was expecting of him,
• he also demonstrates good concentration
• he is generally delayed in fine motor skills,

The physiotherapist said that the next step for his gross motor skills is to get Raphael moving from sitting to crawling and crawling to sitting.