Yesterday, what a day!

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.