Friday, November 11, 2011

Today's Hospital Appointment

Today we had our routine appointment for Joshua at the hospital.  It was pretty interesting actually.
There was a student doctor working with our "real" Doctor, he is doing his final exams in a couple of weeks and was doing the last of his prac work.  So as part of that he obviously has to do things (obviously!)  LOL  So our Doctor asked if I minded that he sat in on the appointment, and that as part of his work he needed to ask me some questions etc as though he was the "real" doctor.  He was given 10 minutes to ask me things about Joshua, and then I could give feedback on how i thought he did and the real doctor did too.  It was good and lame at the same time.  LOL  His first question was "What brings you to the clinic today?"  Fair enough question if that was my first time there, but dude, we might as well live here.  Of course, he doesn't know us and the point was that he was trying to get an idea of Joshua's problems and history, it was just really weird to be sitting there having to explain everything all over again! 10 points to me though, because I did it, and I didn't even cry!
I told him we were there because Joshua has Cerebral Palsy, and then he asked some questions about his development, and he asked "What was his birth like?  Was he born here at RDH?"  And I said "Yes he was.  Well, he was a planned home birth, but we transferred to the hospital due to heart decelerations so he was born via vacuum after we arrived here"  And then he asked me if there were complications after delivery, did he spend any time in the Special Care Nursery?  And I said "Yes, he went to Special Care not long after he was born because they were concerned about his breathing being a bit noisy, but he seemed to be doing really well until he decided to start having seizures when he was about 5 hours old."  Just seemed like a good idea at the time I guess.  LOL
Then he was asking me about whether he eats food (I am not sure what the alternative was that he had in mind?  Tube?)  It was sort of an odd way to phrase the question.  I said Yes, he eats food, that we have to spoon feed him, or he can eat finger foods on his own if they are cut into small pieces, and he drinks toddler formula.    He asked if he was breast fed as a baby, (Whaaaat?  He still IS a baby?! LOL) and I said yes, he was breast fed until just after he turned 1.
Then he was asking about his growth, and if it was going ok.  I was like well...  he is growing.  LOL  He is little, but growing!  Then he starts checking his weight on the percentile chart but maybe he wasn't really thinking about head circumference, so I decided to throw him in the right direction by saying "Yeah, and his head has its own special percentile....  a negative percentile" Which then prompted him to look at his head circumference and he announced that his head had grown 1mm in three months.  LOL awesome.
Finally he asked me if I had any concerns, and I said No.  The (real) Doctor asked me if there was anything I thought he could have done better and I said Not really, he was alright, but then the Doctor told him that he should have asked me earlier on whether or not I had any concerns because it is important to address the parents concerns rather than be too focused on the medical details all the time.   Fair enough.  LOL

So, this is Joshua's stats now, about a week shy of 18 months:

Height: 77cm (5-10%)
Weight: 9.69kgs (3-5%)
Weight for Height: 25-50%
Head Circumference: 42.4cm  (0%)  

So he is a little fella, but his height and weight are fairly proportionate now.  And I really do believe that kids with small heads tend to be small all over because otherwise they would look weird.
They have no concerns about his growth other than his head of course, which there is nothing that can be done about it, so in other words, no point being concerned about it either!

The other interesting thing about this appointment is that the Physiotherapist from Carpentaria came along.  Now, I have known that Joshua needed AFOs (braces for his feet/ankles) for about 5 months now.  And I've been about ready to choke somebody over this because things just weren't getting done about it.  First it was delayed because we changed services.  Then it was delayed because...  well, who knows, because I am pretty sure there was no good reason.  And I was planning to complain to the Dr today and make him write the referral if needed.  It is most annoying because Joshua is not able to make any further progress in terms of standing and walking without them.  So, this Physio is pretty new to Carpentaria and only saw Joshua a handful of times, but she took it on herself to come to this appointment and get the referral done.  In the waiting room while waiting for the Doctor she asked me about whether or not we have any equipment for Joshua at home at the moment.  I told her No, and then told her what equipment I had been told that he needed (Stander, special chair) and that it had been months but we had not gotten anything yet. She was clearly not impressed.  She asked if I needed a bath chair for him, and I said No, he was ok in the bath because he just plays or W-sits.  I showed her that he has to W-sit because 1. He can't get into a regular sit independently, and 2. when he is sitting on his bottom his right leg stays bent due to his tone and makes him unstable.  She immediately told me that she had some leg wraps (Leg immobilisers) I can use, and was I going to be home this afternoon, because she would bring them to me.  These wrap around his legs and hold them nice and straight, so he can practice sitting on his bottom with his legs straight and even.  And she said I would get the other equipment next Monday because she was having an "equipment day".  I felt relieved to know I was finally going to see some of these things.  So anyway, she came into the appointment and had the referral done, and was also able to talk to the Doctor and give her input on how Joshua is going.  The Doctor indicated that he thinks communication is going to be a big issue for Joshua.  The physio said that Joshua has good 'pre-communication' skills, and good play skills.  She had the Doctor check him over to see if he needed to have a consultation with an Orthopaedic Doctor, but it was decided that at this time, it is not necessary.  We also got the results of his hip X-ray.  All is good, no signs of dislocation at this stage.  She also told us that Carpentaria is planning to start Hydrotherapy next year, which would be good for Joshua. The plan is also to try and get him seen at the CP rehab clinic in March.    

The Doctor made an interesting comment to the Student Doctor, which was "When you look at Joshua, you see obvious motor problems, but you also notice that he is very bright and alert.  That is one of the biggest challenges for people with Cerebral Palsy because they are often of normal intelligence despite being physically impaired".  Honestly, it is REALLY hard to tell at this age what cognitive ability is like, and I often feel discouraged because there is so much Joshua doesn't seem to understand (though, like every other area, he does make slow and steady progress)

The physio told me afterwards though that she agrees with the Doctor, that she thinks Joshua is smart.  So I guess that is good that they think that! She also said she thought his Doctor is really, really good.  After the appointment with the Doctor, the physio took me straight downstairs with her to Orthotics with the referral to make his appointment then and there.  The appointment has been made for next Friday and she is going to attend it with me.  She told me that she worked in private practice before and is used to getting things done, so she is also frustrated by the lack of action that seems apparent within government funded services.  She told me if I need things, to tell her, and she will make sure I get them, quicker than what I have experienced so far.  Then later on she called me to make sure I was home to bring the leg immobilisers over, and said she would also bring the stander over for him today. And she did.  So now I have decided that I really like her.  She has done more in one week (one day even) than has really happened in the last 3 months.

Joshua in his Loaner Stander, also wearing leg immobilisers and his shoes.
This is an upright stander, and it is the least supportive stander you can get.  She is thinking that he will only need it for a few months now, and especially once he gets his AFOs in a couple of weeks, he will be able to stand much better just holding onto things etc.  She wants him to use it for 5-10 mins at a time at frequent intervals during the day.  She also wants him to wear the leg immobilisers for a while before bed each night to give his legs a good stretch. It would be good if he slept in them all night, but she doesn't think that will happen and thinks they would be too hot.  He will be getting special splints that he has to sleep in when we get his standing AFOs as well...  The aim behind putting Joshua in the stander, and using the immobilisers is that stretching out the muscles and weight bearing ultimately help to decrease tone.  It can also help to prevent contracture.  (when the muscles become permanently fixed in a tightened position)

So in other news, I also got a phone call while we were waiting at the hospital to make an appointment for another hearing test.  He passed the last one, so I really hope that it will go ok this time.
He is also getting referred to an Opthamologist to have his eyes checked.  He doesn't appear to have any vision problems, but because he has never formally had his vision tested, the Doctor wants it done to make sure it is all ok, because poor vision can impact motor skills, so if there is a problem, it is best to catch it.

So really..   it never ends.  And it seems like everything comes in bursts....  things will go quiet for a while and then all of a sudden we are swamped with appointments again.

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