Eats first M&M

Well I didn't think he'd be able to handle an m&m but my wife thought otherwise and as today marks the start of us starting Raphael's potty training, Annie wanted to the food reward system to be something new.

He handles the m&ms well, he eats them by waiting for them to disolve in his mouth and then they are no problem for him.

The potty training on the other hand hasn't been entirely successful yet but we have only be trying for a couple of hours so far and it took our other kids a week before they were potty trained.

Raphael can fly a kite

Raphael's development: physical and mental

The other "R" in CHARGE - Retardation of development

The following are the details of what we know about Raphael's development:

1. It is noted that Raphael's brain appears normal from an MRI scan (18/12/2006)
   
2. Sensory problems are noted with:
• Hearing from ABR (Auditory Brainstem Response) tests and VROA (Visual Reinforcement Orientation Audiometry) tests. See Raphael's ears, hearing and balance for detailed information.
  
• Vision because of bilateral colobomas in his eyes. His vision in his left eye is nearly non-existent but he seems to receive very useful information in his right eye. See Raphael's eyes and vision for detailed information.
  
• Balance from malformed vestibules with only one hypoplastic semicircular canal. Practical experiments show him to slow or no response to to unbalancing circumstances. See Raphael's ears, hearing and balance for detailed information.
  
3. At this stage Raphael appears to only be slightly delayed in his development which is appropriate considering his sensory problems. The following are the groups of posts where I have noted (what I think) are significant signs of development.
   
• Gross motor development
• Language development
• Fine motor development
• Hearing
  
• Vision
• Intellectual development

The Implications of These Conditions

1. A normal appearing brain is not necessarily a guarantee of normal mental and physical development but it is an encouraging sign.
2. Raphael's sensory problems are likely to delay his development until he receives technology to help compensate for his sensory problems or until he learns to compensate for one sensory loss by using information from another sense.
• Raphael has been fitted with hearing aids and frequent visits to the audiologist are necessary to continue to try to resolve the problems with feedback that we are having with his right ear. The problems are probably due to the lack of definition in his right ear which make it difficult to find anchor points for the hearing aid.
• Sadly there is little that can be done for the lack of vision in one eye. If, in the future, Raphael demonstrates that he has some useful vision in his left eye then it may be appropriate to place a patch over his right eye for short periods of time to force his brain to analyse the data coming from his left eye.
• Poorly developed balance organs mean that Raphael will have to use different senses to compensate for the lack of balance organs (vestibular semi circular canals). Physiotherapy will play a big role in training his other senses.
3. I attribute Raphael's (only) slight delays to the excellent therapeutic advice and equipment that he is receiving from ELT (Early Learning Tasmania), CHC (Calvary Health Care), and RIDBC (Royal Institute for Deaf/Blind Children).
   

Summary:
Thanks to lots of stimulation, Raphael is developing well considering his sensory problems; he has even started to walk at 26 months and has a vocabulary of about 15 Auslan signs. It is encouraging that our hard work is helping him developing well, but this is a double edged sword. It means we need to continue to work hard on his therapies even though we feel drained from the endless appointments and hospitalisations.

Two year old Ocupational Therapy assessment

Raphael had an Occupational Therapy (OT) assessment today and passed with flying colours.

This gives us even more incentive to focus on his communication and gross motor skills which are lagging behind significantly.

Advanced fine motor skills

Raphael has been improving his fine motor skills lately. So much so that this Occupational Therapist has gone as far as to say that his fine motor skills are now advanced for his age.

This is amazing. He started off with people calling him delayed, then slightly delayed. We were then warned that his development will be adversely effected by him not being able to participate in eating finger foods. But now his OTs say that he is advanced for his age.

We have ready that early intervention is very successful for CHARGE kids and it is nice to be able to say that Raphael is turning out to be one of these success cases.

Well done my boy!

Weighing today (10.08kg)

Today his weekly weighing put him at 10.08kg which is a marginal increase of 50g since last weighing.

Also today, Raphael's Early Learning Teacher and Vision consultant visited us because Raphael could not make it to the last group with his ear infection. His teacher brought a box with her that seemed to contain an endless stream of things that Raphael found intensely interesting. Raphael showed off his ability to see and demonstrated his fine motor skills by posting objects into a box and manipulating small objects with his fingers.

Development notes

Raphael is cruising a bit more confidently now and sometimes he is willing to transfer his grip from the low table to another nearby object, but usually he will stay standing around the table until he is tired and then complains to us, because he doesn't know how to get down by himself. We have been trying to teach him how to get down but it is like trying to bend a plank of wood - except this one complains at us.

Cruising transfer:



Can't get Down:



He has become very eager to feed himself with a spoon and eat food that his older siblings are eating. This has posed a bit of a problem becuase he can now reach some of the food that his siblings eat and we have caught him putting food in his mouth on a number of occasions. Of course this makes him choke and vomit.

He is able to draw with crayons a bit now. Well by draw I mean that he can throw the piece of paper off the table and make a stripe and some hammered dots on the table where the paper used to be. This is usually followed by an attempt to chew the top off the crayon which, while isn't desirable in itself, is encouraging that he hasn't developed an oral aversion which is common in tube fed babies.

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.

Development observations

He currently has seven teeth and they look ok at the moment (not that I am a qualified dentist).

He is now able to manipulate two objects in one hand. We can demonstrate this by handing him three objects one at a time. The first he takes with his right hand, the next he takes with his left hand and when offered the third, he sometimes transfers an object from one hand into, the already occupied, other hand before taki9ng the object.

Raphael is learning his bed time routine well. Last night Annie and I were going about the business of setting up of of his night time equipment when he lifted his leg in the air when we went to put his oxygen monitor on his foot. This isn't the first time he has done this and we are now convinced that he has learned this behaviour. He has only been on CPAP for a very choppy/interrupted month and so it took us by surprise that he has learned to help us, by doing this, so quickly.

On the down side, he has vomited three times today so far. He is still not very well.

Early Learning session today

Annie took Raphael to an Early learning session today and was pleased to note that Raphael was finally able to drop objects into a box. I am sure that more was achieved during the session but I was not present so I cannot give a full account.

Putting things on things

Finally he has got the hang of putting things in a designated area. For example he has a music box with magnetic dancing pieces (bees) and he has finally got the hang of putting the bees on the music box so that they dance. Admittedly they don't stay there long becuase he likes to pick them off whenever he sees them dancing on the music box.

It is still difficult for him to do and although he can put things on other things, I have still not seen him intentionally drop something in something else. Or to word it another way, I have not seen him drop an object into a container.

Some development

He can now confidently move from sitting to crawling position without cracking the side of his head on the ground.

He has also worked out how to use a hammer to try to hammer little pegs in holes. This is definitely a small step up from his previous attempts where he would swing the hammer and miss the toy completely. He usually ditches the hammer after a short time and then just uses his palm to hammer at the pegs. The pegs usually don't move at all with either method so he then resorts to just pulling the pegs out of the top and chewing on them.

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
  

Hi five

There was lots of fun to be had this evening by encouraging Raphael to give "hi fives" to mummy and big sister.

Also on the development front he has also been known to sign "hello mummy" a few times recently. Two words together; wow! Or maybe it was just "hello" followed by him scratching his head again.

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.

A burst of skills over the past week

After a long period of not doing much in his life, this last week has seen a burst of development for him.

He has discovered a bunch of Auslan signs and uses them whenever he can now. His vocabulary consists of:

• hello
• clapping (not strictly Auslan "applause" but pretty close to Auslan "happy")
  
• daddy/mummy (he uses these interchangeably but it is only luck if he gets the right one)
• more (This is associated with solids feeding so he doesn't use it at other times, not even for tickles yet)

His vocalisations are slightly better too. he has started to make an occasionally short sound. instead of always saying "mmmmmmmmmmmmmmm". Now he sometimes says "mmm"

He has definitely worked out the general concept of cause and effect. He has been shaking a rattle for a few weeks now and recently his fine motor skills have allowed him to press big buttons on sound toys that respond with lights and sound.

He has even had the energy and courage to crawl out of our living room by himself.

Gymbaroo

For several weeks now Annie has been taking Raphael to Gymbaroo. This is a special private class for early development. Today was the first day that I went along to this class.

It is interesting with activities to promote balance and muscle tone with special equipment and orientation changing activities. Also for memory with songs and movement.

I think that it is more of a workout for the mums (and dad) than the babies. But I can see how the activities could be helpful for him though . Especially the activities that train balance, such as being pushed around on the omni-directional skateboard.

Pincer grip

A while ago asked us if Raphael had managed to pick up objects with a pincer grip (thumb and pointer). We hadn't noticed him do that, but I must add that I hadn't been looking for it.

Today I noticed him do it but he obviously finds it difficult to aim his fingers at the object. I guess this is because of his poor depth perception.

More development

He has two new top teeth. These seem to match up nicely with his bottom teeth. I don't suppose he will be using them much any time soon since anything that isn't puréed gets choked on and vomited back up again quick smart.

He has learned to clap hands. I always find uncoordinated babies hand clapping to be entertaining to watch.

He might have signed "all done" today in response to us signing "all done" to him (after finishing his puréed sweet potato). I can't be sure about that though.

Early Learning

Annie started to take Raphael to the Early Learning programme run by the Tasmanian Department of Education.