Thursday, 27 September 2007

The blind receive sight!

We purchased some eye patches at the chemist today and patching his left eye has been an amazing experience. Unlike our previous patching experiences, where he just sat still and cried, this time he wanted to explore and actively grabbed things with his hands. Of course he is not as accurate as with his right eye.

I had prepared some toys that made noises so that they might have been able to draw his attention to them but he was not particularly interested in them. He happily found all sorts of things to play with. We found that he seemed to be able to see quite small things so we started to test to see exactly what he could see. We put smaller and smaller objects on his play surface, until he could not see them any more. We found that he could even see coco pops. The only test that he failed was that he could not see white grains of rice on the pink blanket; having said that, my wife could not see them either though.

This has taken us completely by surprise. We thought he was almost completely blind in his left eye but he has shown amazing prowess with it.

This has reminded me of a passage form the bible - Luke 7:22:
So he replied to the messengers, "Go back and report to John what you have seen and heard: The blind receive sight, the lame walk, those who have skin diseases are cured, the deaf hear, the dead are raised, and the good news is preached to the poor.
His left eye seems to be much better than before, his gross motor skills still improving (although he is not yet walking), his eczema has cleared up, he is still deaf (I expect God is still working on this one), and he is not dead.

I send my appreciation and admiration to all of Raphael's doctors, nurses, therapists and teachers. Your skills and hard work are improving my son's quality of life.

Monday, 24 September 2007


The ophthalmologist review today was mostly done by a registrar at the hospital. We talked about the possibility of probing his tear ducts again but because we are still paranoid about Raphael having general anaesthetics we declined the offer.

We obtained some information about eye patching to see if we can improve the vision in Raphael's left eye. Both the consultant and the registrar didn't think that there was any real hope for getting vision out of Raphael's left eye though.

Wow (10.43kg)

Raphael's paediatrician is going to be very happy with him the next time she sees him. He has put on 70g in the last week.

He is becoming less and less interested in the special formula (Nutrini) that we feed him and now it is common that he takes the bottle and gives the teat one lick before giving it back to us. I can't blame him for it, it tastes terrible! One person commented "I thought it was for tube feeding only, I didn't think anyone would take it by mouth"

To make sure he is getting adequate nutritional content, we have been adding scoops of regular baby formula (S26); we have been adding it to his purées in just slightly less proportion to that recommended to be added to water. Because he is taking less fluid we are a little concerned about whether he is getting enough water. He seems happy enough and I haven't seen any signs of dehydration yet, but I will be asking the dietician about this the next time we see her.

Saturday, 22 September 2007

new hearing aid

The new hearing aid is a bit of a pain. It is really quite large and it's curved shape means that it is hard to get the double sided tape to stick to both it and his head. The combination of this larger aid, his low set ears, and having almost no neck makes securing this hearing aid in place to prevent feedback extremely difficult. Fortunately the new left ear mould is a really good one so it is compensating a bit for the difficulties we are having with the device itself.

I originally thought that the old hearing aids were a bit annoying in that the battery compartment had to be opened to turn off the aid. Annie soon learnt a trick that meant that we didn't have to use the supplied tool to open the battery door but we were still looking forward to the possibility of a new aid with a better "turn off" mechanism.

However, the new aid has turned out to be even more annoying in this area. It has a special little battery door lock that can only be undone with an extremely fine screwdriver. Only the tiny screwdriver that comes with the hearing aid is small enough to undo the lock, even my jewellery screwdriver set doesn't have a small enough screwdriver to operate the lock. In my attempts to find a way to operate the lock without the screwdriver, I think I have managed to break it. It now seems to open and close easily regardless of whether it is locked or not (oops). Oh well at least I have solved one problem.

Thursday, 20 September 2007

GP appointment today

Annie took Raphael to our GP today to arrange:
  • five doctor referrals for our Sydney trip,
  • completing a clearance to fly form that the airline requires,
  • eighteen month old vaccination, and
  • the "blue book" eighteen month check.
For international readers, and people without children, the "blue book" is a small blue folder that is issued to every baby at birth which contains some very basic baby parenting information and a place for medical history for the baby. There are recommended check-up dates for the children and a list of things to check off, to confirm that your baby is developing at a reasonable rate. The idea being that if there are any areas of concern, they would be highlighted by the checks in this book. Our GP didn't think that it was necessary for this check because everything that was in there has already been identified as being a problem and is being managed in detail.

Monday, 17 September 2007

New hearing aids and weight check (10.36kg)

I weighed Raphael today at 10.36kg. This is a milestone for him becuase he has finally weighed more than the first weight check at the beginning of the trial (10.3kg). But before I hear you cheer too loudly, this only represents a 60g gain since 9/7/2007 (10 weeks).

Speaking of loudness, we also took Raphael to Australian hearing today to get new hearing aids for him that can supply higher volume for his left ear. Unfortunately, one of the new aids was missing the childproof battery lock and so he will have to wait for that one to be repaired. The good news is that it was the right aid that was missing the lock and so he is able to wear his old right hearing aid (with the same volume), and he can wear the new left hearing aid with the enhanced volume that his left ear needs.

Saturday, 15 September 2007

New sounds

He has finally started making a couple of new sounds.

The first new sound is "ba". We think that he tries to say banana when we are feeding him a mashed up banana but he is very inconsistent with his pronunciation.

The only way I can describe the other new sound is something like: "wva-wva-wva", it is like he is saying the "w" and the "v" at the same time.

Tuesday, 11 September 2007

Finally able to get down from standing

Annie and I have been trying to teach Raphael how to get down from standing for more than a month now and he has finally got the knac. Thanks to a visit from his early learning teacher, who made some suggestions in our home, we setup a new play area for him and put some "half way" cussions behind him so that when/if he plopped down backwards, he would just sit on the cussions and not be frightened by the big drop.

After a week's practice of clambering around these cussions, which incidentally he is also willing to step up onto and down from, he is now able to plop backwards from other surfaces and also to bend over and bend one knee to get down. Of course he still needs to hold onto something when he is standing up, I suspect that will take some time to train him to be able to stand by himself.

Monday, 10 September 2007

Another weighing (10.29kg)

Raphael has been wolfing down the food over the past few days and so we were certain that he was going to put on weight. Instead of the usual ~600g of food that he normally eats, he has been eating over 900g each day for the last three days.

He weighed 10.29kg with is a gain of 380g. He had even done a poo just before I weighed him so it is not like he was holding in a full load to make his weight look better.

Wednesday, 5 September 2007

Early learning and Australian Hearing

My wife forgot about attending Early learning this morning and they called her asking if she was coming. Scrambling everything together, she was there within fifteen minutes and found that the she was the only person scheduled to attend the session that day. The whole place had been setup just for Raphael. I think that she felt quite guilty about forgetting because of this.

I certainly don't mean this to sound like I am berating my wife for forgetting; but quite the opposite. I mention it becuase this is the first appointment that we have forgotten in the hundreds of appointments that we have had. Annie has been the solely responsible for scheduling appointments with practically no help from me at all and to have only forgotten one, amongst the countless numbers that we have had, I think is amazing.

Well done Annie! I cannot think of a high enough accolade for you, you are priceless.

In the afternoon we went to Australian Hearing to have more accurate hearing tests and new molds made. His left ear is only hearing above 90-100db which places that ear in the profound hearing loss zone. His right ear is much better, being a 45-55db loss (from memory).

Monday, 3 September 2007

weighing (9.91kg)

He has been eating well so this weight loss of 230g down to 9.91kg has come as a surprise for us. We will do some kj analysis to see if he has had reduced energy intake.