Q: So what has been happening lately? A: The regular drudge of appointments of course.
In addition to the occasional doctor appointment, this is what a typical week looks like at the moment:
Monday: Signing with a deaf adult followed by the early intervention playgroup
Tuesday: Speech Pathology
Wednesday: RIDBC (Royal Institute of Deaf and Blind Children) videoconference
Thursday: Teacher of the Deaf - teaching listening skills.
Friday: Childcare in a mainstream childcare centre. We are hoping to give him some real world exposure rather than the world of therapy and "special needs" that he is immersed in for the rest of the time.
I mentioned to another family that I have been learning Auslan and they asked me to publish my revision videos so here they are. Of course this does not replace doing an Auslan course but I hope you can get something out of them.
I work with computers for a living (a systems administrator for those of you who know a little about the industry). This gives me an advantage with working with computers to make my life easier and the ability to give me information at my fingertips. However there is always a cost of having increased information, and that is increased time required to absorb that information and turn it into knowledge.
On Thursday night I spent three hours writing a script (programme) to download all of the video signs from http://www.auslan.org.au for my own personal use in educating myself more in Auslan. If this is in breach of the copyright of the site then I do apologise. I also downloaded the synonyms and meanings of the words and grouped them all appropriately together so that I can easily look them up. I then loaded them onto my phone with appropriate free software to be able to display them. Now I can lookup the signs for over 7000 words quickly wherever I am. For instance I just timed myself and from a cold start it took me 20 seconds to look up the word "Whatever" and so now I know how to sign it.
The next part involved getting a set of pictures that Raphael can look at so I can then teach him the sign for the word. The reason that I was thinking of doing it this way is because of the outstanding success that I had previously with teaching Raphael signs from pictures. He loves looking at the pictures on my phone and then signing it.
So my wife and I started scanning/photographing the pictures from a childrens' picture dictionary of 1500 words. Then I spent another couple of hours writing another script to compare the list of video signs with the list of picture signs that I had and creating folder of all of the correlating pictures.
So now all I have to do is stay one letter ahead of Raphael to teach him a stack of signs. So far I have gone through about 60 signs and reviewed or learned all of them. This has brought me up to about half way through the letter b so there is plenty more to do. I have only scanned up to the letter D, so I will need to do more photographing of the dictionary aswell.
That is my plan but there is one serious flaw to the plan. Raphael learns faster than I do.
This is the sort of thing that I have access to now:
Click on image to replay the sign.
crash
smash
accident
As a Noun
An event in which a moving car or other vehicle hits something and is badly damaged or destroyed. English = crash, smash, accident.
As a Verb or Adjective
Of a car or other moving vehicle, to hit something and be badly damaged or destroyed. English = crash, smash, have an accident.
Raphael has made moderate speaking progress this year but has been picking up Auslan signs extremely quickly. I can no longer count how many signs he knows because there are too many to keep track of.
Today he spontaneously used a two sign phrase that we have not used with him before. He signed "Brother" then "Sit" then pointed to his back. This was shortly after his mean father put a stop to a game where Raphael's older brother was bouncing on Raphael's back.
So that Raphael can participate in eye chart tests, we trained him to sign the eye chart pictures. I did this by photographing the chart with my phone and sitting with him and going through the pictures. Here is the result of our work:
You'll notice that I have been a bit slack in blogging lately. I have stopped blogging every single appointment because it was getting silly with at least four a week.
Another Australian Hearing appointment today confirmed that the grommets are no longer in effect and it looks like he might have more fluid in his right ear. We will have to decide whether we want them to be reinserted during his next operation.
He performed as expected on his hearing tests and new moulds were taken to try to resolve the increasing problems that we are having from feedback (squealing).
It was a long appointment and we arrived at Raphael's new signing playgroup with only 15 minutes left. We had a brash introduction to the teachers there and I was a little disappointed that there was a lot of talking happening there. I was hoping that it might be a speech-free playgroup to encourage Auslan development for the children but there seemed to be more English than Auslan. Maybe all of the administrative work necessitated using a language that most people were fluent with and maybe the quantity of signing will increase next time.
Raphael as started to sign nappy. He is very clear and he knows what it means but I don't think that he has put together the sensation of having a dirty nappy ad needing to have his nappy changed.
For instance If I tell him that it is bed time then he might sign "time" or "hearing aid" or "nappy" all things that we attend to at bed time. But he hasn't signed nappy due to having soiled it.
Our first two earnest efforts to get Raphael to sign was with the signs "all done" and "more".
As Raphael always seemed to be "all done" when it came to eating he leared that one very early on. It was his first sign. And so we eagerly kept pushing for him to learn "more" but time dragged on and it didn't look like he was every going to say or sign more.
But all of a sudden here it is "more", spoken poorly, but signed nicely. He has been doing it for a few days now and it is very clear.
Raphael has just signed some two sign sentences: "This", "there" (put this in there) "that", "head" (put that on my head) "finished", "there" (I am all done, put this pencil away)
Raphael loves to show off and when there is a big audience he is at his most adventurous. He has to get over the initial shy factor first but then watch out for exciting new things from him.
On this one extended family gathering Raphael signed Hearing aid when it was whistling.
He then demonstrated how to push it in to stop the feedback.
And then to everyone's amazement he stood up! Well only for a split second, but it was the first time that he had even tried to do it. He tried again and again until he managed to be on two legs for two seconds. After that it became a game to intentionally fall over and then laugh so that was the best he managed for that day.
Last night at 10:30 Raphael became extremely restless while sleeping and it turned out he had a fever (39 degrees).
we gave him some panadol and he was so thirsty that we gave him some hydralite but after only 15ml of the hydralite he vomited everything up. We wanted to give him another dose of panadol because he had ejected it all but we weren't sure if it was safe, we didn't want to overdose him on paracetamol.
To find out if it is ok to give another dose if the first one is vomited out we called the new home care nursing team but we knew that they closed well before 10:30 and so we weren't surprised when there was no answer. We then called the 24 hour doctor telephone service available in Hobart. This was the first time that we had called this service for Raphael and after the nurse gathered some information from us over the phone, she asked us if we wanted an ambulance or to take him into the hospital emergency room. We didn't think that he needed to go to the hospital but this is the usual reaction for medical professionals who hear/see Raphael when he is a little sick. After getting a very brief medical summary, she referred us to a doctor and he told us that it would be ok to give Raphael another dose of panadol if he had vomited the previous dose out within 25-30 minutes of it being given.
He said that it was "refreshing to hear" when we said that we didn't want to bring Raphael into hospital whenever he is sick or we would be going there every week. From looking at him this time though I quietly thought that we might end up bringing him into hospital later that night; he had slight respiratory distress and he oxygen saturations were 90-91 when on CPAP instead of his normal high 90s. If he got any worse then I was going to bring him in. The previous night I was woken up 5 times by Raphael. I needed sleep but it didn't look like I was going to get much sleep that last night either so I mentally prepared myself for another sleepless night in the emergency room. I got to sleep at about 12:30 after monitoring him for a while and he woke up at 5:30. That was much better than I expected.
He is bright as a button now and this morning while watching me prepare his breakfast he even said and signed "more" without any prompting from me. His nose is runnier than normal but I don't think that we will be taking him to the emergency room today.
Raphael has done some new things. He is getting over his sickness finally and has been trying out a new sign and a new sound. He can now say "ooooo" and can copy us when we sign "more" although I dont believe that he knows what it means.
On another note I have somethign to complain about. As a general rule we try to feed Rapahel as much food as possible, but if he eats too much too quickly then he vomits. So it has become an art form to determine whether he has eaten too much recently. Today, recently, we decided that he had eaten enough for the time being but for the first time I can remember he wanted to eat more. We didn't want to risk giving him more and so we refused to give him anything. Unfortunatelly this made him upset and when he gets upset he can go into a coughing fit and when he goes into a coughing fit he is very likely to vomit; this is exactly what happened. So in an attempt to prevent him from vomiting, we caused him to vomit. That was so frustrating!
He uses yummy usually when we feed him something from a spoon, particularly if it was something from our plate/bowl rather than something from his own bowl. He uses "hearing aid" whenever we are about to put his aids in. The problem with this is that his hand is in the way.
He is responding quite well to verbal communication while he is wearing his hearing aids but will only verbalize language with grunts rather than pronounceable words or syllables.
On the down side his left ear's hearing seems to have become significantly worse since the gromet insertion (90db loss) this places his left ear in the severe to profound hearing loss category. It is our fear that because it seems to have become worse, it may continue to degrade in the future.
Also at the moment his right ear's grommets are leaking quite a bit of goop which keep on clogging up the hearing aid molds making them useless. We have become quite proficient in cleaning them but it is not a pleasant task to extract a thick glob of puss from the mold tube.
Raphael has recently started tall kneeling (kneeling with his thighs perpendicular to the floor) without holding on to anything for a couple of seconds at a time. He seems to be confident with this but then always reaches to grab hold of me before he has any chance of falling.
He has just recently started to sign "time" back to us when we sign "bed" "time" to him and put him in bed. "Time" is a complicated sign but he does a pretty good job of it with a pointed finger and two hands.
On the other hand he uses "finished" less frequently now and is more likely just to turn away from food offered to him. If asked if he is all done then he will enthusiastically sign finished (two handed) to confirm his desire not to eat any more. Also he has begin to use a one handed "finished" sign to indicate that he is having a good time so it can be a bit of a challenge to work out what he really wants. If he is signing "finished" and turns away from food when offered then that is the message that he does not want to eat any more.
Yesterday started with my wife waking up with a moderate allergic reaction. So I:
Rushed my daughter off to school leaving my wife next to the phone with strict instruction to call 000 if she started to have any problems with breathing.
Rushed onto hospital to pick up Raphael
Realised that he didn't have his hearing aid and so rushed back home to pick up his hearing aid
Zoomed down to Early Learning Tasmania where he got some one-on-one work with physiotherapists. The next lot of gross motor practice for him will be to practice getting down from standing (that is standing while holding onto something). In general they said that although he is still a little behind in his gross motor skills, he should not be doing more at this stage anyway because of his other impairments.
Flew back home so Raphael could have a sleep before his Australian Hearing appointment (to get new hearing aid molds).
Received a phone call saying that the molds weren't ready yet (phew, that gives me an hour break)
Took Raphael along to a parent teacher interview (for our elder daughter)
Rocketed back to hospital to meet with a orthoticist(?) (someone who practices orthotics) and occupational therapist to see what they might be able to do about sorting out a customised hat to secure the CPAP on Raphael at night.
Immediately afterwards we met with intensivist and paediatric home care nurse about arranging necessary equipment that we will need to have at home to maintain the CPAP on Raphael. One extra piece of information that came out of here is that it is not the air pressure that causes gradual facial squashing but rather the pressure of the straps that hold the mask on. Another interesting point was that the intensivist was going to alert the ambulance service that if we call about Raphael needing emergency transportation, then we really do need it. I imagine that there is some kind of list of people that we have been added to, titled These people aren't kidding if they call.
Drove to an extended family dinner at my parents place, stopping at a bunch of shops to buy supplies along the way. While at this event Raphael learned a new Auslan sign: "applause". He would raise his hands in the air and, in response, the rest of the family shook their hands in the air accompanied by a "yay", eventually he got the idea of vocalising as well and he would raise his hands, take a deep breath and say "aaaaa" with a big grin on his face. (photo courtesy of my mum).
Finally after saying a long goodbye to some relatives who were going back to the mainland, we zipped back home for me to pick up my work clothes and then I went to the hospital to fit Raphael's CPAP mask and sleep next to him in order to gain experience with fixing any problems that might occur overnight.
Last nights CPAP experience was pretty good with the new blue gel mask. This blue gel mask had a ridiculous clear membrane on the inside that was frequently blocking Raphael's nose (that was until I attacked it with a pair of scissors the night before last), it is much better now. Once the mask was on and strapped down it only took half a minute before he was fast asleep. The headpiece needed to be adjusted four or five times last night but apart from that there were no problems. I am looking forward to getting the custom made headpiece when it is completed.
I got about four hours of interrupted sleep last night in the hospital. I am looking forward to tonight when it is my wife's shift in the hospital and I get to crash at home in a nice comfy bed instead of an armchair recliner that can't be made flat.
Tonight was the last night of the eight week Auslan course. I really enjoyed it and I am using it as much as possible at home. I am sure that Raphael understands some of the common signs that I sign to him. Some common phrases that I think he understands:
come here
drink time
bed time
finished
When I started the course I was unsure whether Raphael would ultimately use Auslan for communication but I wanted to get started early in case he would. I still don't know know if he will so I might continue onto a level one Auslan course. I have not decided if I will do this yet but I have expressed my continuing interest to the teacher.
He can now sign "up", well actually it is nothing like the Auslan sign for up, but I believe that it is a generic baby sign for "up".
This crawl speed is now quite fast when he wants it to be and if my wife or I give him a little smile then he responds with his huge lopsided smile and then he tears across the room all fours, booldozing any toys that may be in the way and finishing with him lifting one arm in the air indicating that he wants to be picked up.
He has learnt a new sign: "Finished" and this one is very interesting because he is actually using it at the appropriate times. As with all of his signs, he is not signing accurately, but I am not worried about that.
This was actually the first sign (along with "more") that I tried to teach him so it is very satisfying that he has finally picked it up.
Today was a busy day. This is my (Paul's) day off but Annie had to take the morning off aswell because of the number of appointments that we had lined up. Today we had:
Consultation with PEG nurse,
Gymbaroo (gross motor development for Raphael),
Consultation with ENT,
"Let's sign" sign language course, and
Tonight Raphael's Early learning teacher will come to our house to discuss a learning plan for Raphael.
Our vaccination appointment was an hour late today and I only arrived to the Early Learning signing course just as everyone else was leaving.
The teacher is so nice though, and gave me a quick one-on-one run through of all of the things that the course covered plus some extra signs that she had prepared just for me (because she knows that I know a little bit of signing already and I am very keen).
My Auslan vocabulary from the "Let's Sign" course with extra tuition consists of about 61 words and 26 letters. From the Tasdeaf Auslan course we have covered about 36 words plus letters and numbers. I don't know how much I have learnt from dictionaries, videos and web resources so far.
Raphael's vocabulary is about 5 words so far. He has got some catching up to do! :)
Tuesday: Speech Pathology
