Wednesday, July 20, 2011

Appointments, so many appointments!

We have a few things coming up, I almost need to write them all down here so that I will remember!!

As I mentioned a few posts ago, following Joshua's Cerebral Palsy diagnosis we have been referred to a different Early Intervention Service, which is Carpentaria Disability Service.  This service is intended for children who are more severe than the ones that go to the Children's Development Team (where we have been going so far).   The ball is now rolling for that, and I have an appointment with someone on Monday August 15 to have a general chat about the service.  (I am actually not sure who/what this person is..  as in, their job title..)   It is just to go over how everything works.  Then the following Monday, 22nd August, we have an assessment with the psychologist.  After this initial assessment, he will start therapy the following Monday.  It worked out well as his therapy is going to be on the same day as it was at CDT, so I have not had to change anything work wise.  I did have a chat on the phone the other day with the Occupational Therapist, she seemed really nice on the phone and she told me that she was going to be Joshua's therapist. I asked her if he would see each therapist (as in physio, Occupational Therapy, Speech) separately, and she told me No, that they operate as a "multi-disciplinary service" and they try to make it so that one therapist is assigned to each child and that they will work on all areas.  But if there is specific concern/complex issue in a certain area they will bring in the relevant therapist on an as needed basis.  I find this to be interesting, as I haven't really heard of it being done this way in other places.  It is no different to the therapy we have been receiving so far though, where the OT and PT would alternate running it each term.  That therapy was 1.5 hours per week and in a group setting...  he will now be getting 1 hour a week on an individual basis.  Hopefully that is better for him?  I initially thought that we might be placed on a waiting list before starting with the new therapy, but when I asked the OT about this she told me No, that based on the Doctor's referral Joshua is a high needs case and will get straight in without going on a waiting list.  Interesting really, as I would expect there would be worse kids than Joshua....  I wonder what they will be expecting when they meet him for the first time, as many times I think he sounds worse on paper than he seems in real life.

So our days at Baby group with the Children's Development Team are numbered...  though his new therapy is on Monday afternoons so technically I could still go...  so we could keep seeing our little friends there...  But I am not sure if they will kick us out...   LOL.  It really is a bit sad, we have been going since Joshua was 5 months old and I usually enjoy taking him.  If we don't keep going, I might have to find something else to do with him on Monday mornings.  Oh, and the other interesting thing about the new therapy is that it is going to be home visits.  (Darn it, now I have to make sure the house is clean, Hahaha!)  The physio at CDT basically told me last week that they want Joshua to have AFO's and they were hoping to get the ball rolling with that before we started at Carpentaria.  This is interesting, because you might remember I posted about this a little while ago, and brought it up at his most recent assessment with the CDT and the OT told me she would rather see him crawl for a while before he got AFO's.  Now they seem to want to do it...  I am not really sure if this will fall into place in time because I am waiting on the forms from Centrelink regarding the disability/carer stuff, and as part of that, we should be able to get a health care card for him.  The physio said that the orthotics cost money (obviously) but if we had a health care card for him then we would not have to pay anything.  So that will be really helpful.  Anyway, it will take a few weeks to get the centrelink stuff sorted once I have the forms, so it may end up that the whole process takes too long and they won't actually have sorted him for AFO's before we change over.  I think the physio at CDT anticipated we'd have to wait longer before getting in too.

So, we also have to go back to the hospital on Friday 5th August.  I think this appointment is a little pointless, but I do appreciate that it was made.  The Doctor is basically expecting us to have gone away after receiving a Cerebral Palsy diagnosis and to have had a bit of a panic attack and then want to go back and ask him a million questions once it all settled in.  In reality, this is not the case for me.  I was not shocked to receive a Cerebral Palsy diagnosis, I was quite certain by the time that he was 8 months old that we were headed that way.  When you read about cerebral palsy and the way it affects movement, the descriptions fit Joshua exactly.  Also, being active in online support groups for HIE means that I have seen many different outcomes for children with HIE...  and for a lot of children Cerebral Palsy is one of them.  Through seeing photos of other children and hearing stories from their parents, I have learned that Cerebral Palsy does not have to be a scary word.  It is true that sometimes Cerebral Palsy can be very severe, but many times people are able to live full and happy lives despite having Cerebral Palsy, and that continues to be my hope for Joshua.  Anyway, I have seen many discussions over the last year about Cerebral Palsy and all of the different options there are for treatment, so I don't really have any questions.  The only questions I really want answers to are not about Cerebral Palsy in general, but would be ones that relate specifically to Joshua and his prognosis, but the truth is, that is still up in the air, the Doctor cannot tell me those things now, just like he couldn't tell me when he was born.  So, for right now, I am totally at peace with a Cerebral palsy diagnosis and we will just deal with things as they come up, one step at a time.  If they are recommending specific treatment options, certainly I will have questions then, but for right now, we carry on our merry way.  

The other appointment we have is another (!$%##!!) Hearing Test.  They called me today and said they want to bring him back to do some other kinds of tests.  I have no freaking clue what, and I wish I did now.  But they told me that the tests they want to do will require two Audiologists to do.  This appointment will be on Wednesday the 10th August.  And this whole hearing thing is pissing me off more than anything else!!          

So, this is what is going on with us right now, and I guess I will be updating after some of these appointments have been and gone, or if something awesome happens in the mean time!  Like crawling!  (Yep..  still waiting on the crawling!  LOL)

1 comment:

  1. I love reading about what Joshua is doing, you are such a great mom!! Can't wait to hear when he starts crawling!!