Wednesday, 27 August 2008


What we have managed to do for Raphael

My intention for this post is to boast about the progress that we have made with Raphael.
  1. To get Raphael to gain weight in the early months he was given a Naso-Gastric Tube (NGT) to help him get enough food.
  2. We avoided the next step, after an NGT, which was stomach surgery involving a gastrostomy tube and a fundoplication. We managed this by pulling out his NGT and putting him on a strict feeding schedule of rich formula and heavily fortified pureed foods.
  3. We pushed hard to get Raphael's hearing tested early. The testing showed hearing loss which is currently being addressed with hearing aids
  4. Very early therapy, that we initiated, found a problem with his left eye. This was ultimately found to be a severe malformation.
  5. We were advised that his malformed left eye was totally useless (practically completely blind) but after incessantly asking for things that we could do for his eye we were eventually told that patching (right eye occlusion) might help. Disciplined patching has resulted in his left eyesight dramatically improving even to the extent that he is even receiving useful peripheral vision in his left eye even while his right eye is open. Three expereinced ophlalmologists, two orthoptists, and one optometrist told us that we would not be able to achieve this.
  6. There is a three month waiting list to have a real sleep study done in Melbourne or Sydney but my wife pushed hard to get some kind of sleep study for Rapahel because he would stop breathing at night for long periods of time. She managed to get a pulse and oximetry test for two nights in our local hospital and this showed very clearly that Raphael needed assistance breathing at night. This then resulted in Raphael being added to the home care nursing programme and being put on CPAP with a variety of other devices surrounding him.
  7. Our desire to leave no T uncrossed led us to travel to Sydney to get second opinions in all the areas that effected Raphael. This resulted in us comming back to Hobart with the request that he have an adenotonsilectomy. The result of this so far seems to be that we have been able to reduce the pressure of his CPAP and we are hoping that we might be able to remove it alltogether in the no-too-distant future.
  8. despite being completely blind in one eye and haveing no balance sense, lots of dedicated therapy and appointments mean that we ave been able to get Raphael to walk unaided at just over two years of age. I wonder if this might be some kind of record for a child with his medical problems.
  9. We have taught Raphael some sign language (Auslan) becuase of his early hearing problems. He is still unable to talk properly because of his early deafness and throat problems, but Raphael has a functional method of communication with the sign language that we have worked so hard to learn for him.
Of course this is only the list of successes that we have had. It does not cover the amazing multitude of things that we have tried that have gone nowhere.

Lastly I want to give credit where it is due for the amazing Progress that Raphael has made:
  • Thanks to all of his wonderful medical staff, doctors and nurses who have been patient with our incessent and repetative questioning. Thankyou also for your caring for Raphael and having a give-it-a-go attitude even you have know that what we wanted to do was not going to work.
  • Thanks to all of his early intervention therapists and teachers who have accomodated us with extra hours of work to help him extend to his full potential.
  • Thanks to support organisation and our wonderful Australian government for money that has helped us do things like go to Sydney for the expert second opinions and that will help us go to New Zealand for the CHARGE Conference in October this year.
  • Thanks to my dear wife who always has time for Raphael, and the other kids, and is so amazingly organised when it comes to appointments (only missed two amidst the hundreds that we have had). Thanks also for her dedication to dragging him around to the multitude of therapy appointments that he has. Thanks are also necessary for her encouragement in times when I have been ready to give up on some aspects which, in time, have turned out to be some of his greatest successes.
  • Credit to Raphael for his persistent and social nature that have greatly aided his development.
  • Praise be to God for his amazing faithfulness in supporting us and slowly healing Raphael in this trying time for our family.

A couple more Doctor appointments

We have had a couple more appointments with a Pediatrician and his ENT but apart from Raphael having yet another cold and having his left ear clogged with wax there wasn't much to say.

He has completely recovered from his adenotonsilectomy and now that his latest respiratory infection is subsiding, we have managed to reduce his CPAP level to 4.0 without having any desaturations over night. This weekend we are going to try to put him to sleep without the CPAP on at all (only the O2 monitor).