Friday, September 28, 2012

Hospital Appointment- 28 months

Today we had a routine checkup for Joshua with his Doctor at the Hospital.

Before every appointment, he gets weighed and measured by the nurses.

Today, for the first time, his height was done standing up instead of laying down using the device that babies get measured with :)  That is because today is the first time he could stand up well enough!  He was 87cm tall, which is just over the 20th Percentile, and he weighed about 11.8kg, which is just below the 15th Percentile.  Which is great.

Today, we had a student doctor along with our normal doctor, and we got to start the appointment with the student doctor.  The Student Doctor was actually a trained physiotherapist, so she did know stuff about stuff (Ha!) and have experience with children with Cerebral Palsy.  She did a full check up on him, checking his chest and ears and throat and all the rest, and she also took his head circumference.  She got 43.3cm.  I think at last measure, I got about 44.4cm.  I know my fellow Mum's of children with Microcephaly will be laughing at that, because we have it down to a fine art when it comes to positioning the tape measure to get the true maximum head circumference (Which is how it is supposed to be done) but health professionals often just slap it on and get a reading without particular care for trying to get the biggest possible measurement...  and hey...  every millimetre for our kids counts!!  LOL So yes, either way, his head is still small.

So the particularly great thing about this appointment was that Joshua was able to debut his solo walking to his Doctor.  His Doctor was of course, thrilled to see it.  He has told me many times that Joshua is doing so much better than expected and he said it again today.  That for the severity of the insult to his brain that Joshua suffered as a baby, he would never have imagined that he would be seeing him like this.  I told him "well there you go, when you see babies like that, don't doubt them!" Hah!  He says he although he doesn't see a lot of children like Joshua, Joshua is the first one he has ever seen "get better" over time, that every other child he has seen has either gotten worse or just stayed stable.  He asked me if there was anything in particular that we have done over the last 6 months or so that has contributed to Joshua's great gains and I said No, honestly, it is just him and the fact that he wants to do things.  That is the truth.  I know it would sound great to say it was due to a lot of hard work on my part, or that we'd found a magical therapy that has amazing results, but we haven't.  We've only ever done conventional therapies like Physiotherapy and Occupational Therapy and compared to a lot of parents, I think my focus on "therapy" is a lot less, this is all Joshua.  He woke up one day and decided he wanted to walk.  He walked with his walker for 6 months and then took his first independent steps when he felt like it.  He is doing great with his walking.  He still falls a lot, and still crawls as well, but he is doing a lot of walking around the house and I don't take his walker to day care anymore either.  We have been taking a break from day time AFOs since he started walking independently but I think we need to get back into using them, at least on the right foot, as it does do a lot of silly things still.  The left leg is not too bad.

So they still think that Joshua is a Level 3 on the Gross Motor Function Classification System (GMFCS).  I am not sure how much I have talked about that in the past, it is basically a grading system that grades the severity of the impact of a person's Cerebral Palsy.  1 being Mild and 5 being Severe.  So they are still grading Joshua as Moderate.  I said now that he is starting to walk on his own do you think he is moving more towards a level 2, but she wouldn't say that, but she did say that it is not fixed.  Honestly, there is not really any doubt in my mind that he will end up a lesser level.  I think he will end up at most a 2.  This is the levels for 2-4 year olds:


BETWEEN 2ND AND 4TH BIRTHDAY 
LEVEL I: Children floor sit with both hands free to manipulate objects. Movements in and out of floor sitting and standing are performed without adult assistance. Children walk as the preferred method of mobility without the need for any assistive mobility device.
LEVEL II: Children floor sit but may have difficulty with balance when both hands are free to manipulate objects. Movements in and out of sitting are performed without adult assistance. Children pull to stand on a stable surface. Children crawl on hands and knees with a reciprocal pattern, cruise holding onto furniture and walk using an assistive mobility device as preferred methods of mobility.
LEVEL III: Children maintain floor sitting often by "W-sitting" (sitting between flexed and internally rotated hips and knees) and may require adult assistance to assume sitting. Children creep on their stomach or crawl on hands and knees (often without reciprocal leg movements) as their primary methods of self-mobility. Children may pull to stand on a stable surface and cruise short distances. Children may walk short distances indoors using a hand-held mobility device (walker) and adult assistance for steering and turning.
LEVEL IV: Children floor sit when placed, but are unable to maintain alignment and balance without use of their hands for support. Children frequently require adaptive equipment for sitting and standing. Self-mobility for short distances (within a room) is achieved through rolling, creeping on stomach, or crawling on hands and knees without reciprocal leg movement.
LEVEL V: Physical impairments restrict voluntary control of movement and the ability to maintain antigravity head and trunk postures. All areas of motor function are limited. Functional limitations in sitting and standing are not fully compensated for through the use of adaptive equipment and assistive technology. At Level V, children have no means of independent movement and are transported. Some children achieve self-mobility using a powered wheelchair with extensive adaptations. 

Which reminds me, Joshua has been a w-sitter for well over a year now.  It is not a desirable sitting position as it can be very bad for the hips.  However I just took Joshua for his second lot of hip x-rays in I think early August, and I got the results of that today.  His hips are still completely normal!  Yay!  Cerebral Palsy in general can be bad for the hips because the tighter muscles can cause the hips to start coming out of the hip socket so he has regular hip x-rays to check, but so far, so good!

So perhaps Joshua's Doctor is starting to run out of "worst case scenarios" to give me, because first of all it was about motor skills...  and he is meeting motor milestones slowly but surely...  so then he moved on to telling me he would have communication difficulties...  and although that is the case right now, we are seeing progression there also.  And I always knew he would walk....  And I was right...  and I know he will talk fine too...  Just wait and see :p  So today...  the doom and gloom prognosis was that he might have behaviour problems.  And just for good measure, he also said that Amelie might have behaviour problems too, because she might get jealous of the extra attention Joshua needs.  LOL  We will wait and see hey.  Yep, there it is again...  wait and see...  the story of our lives, but we've been waiting patiently now for 28 months and we have seen a lot of awesome things in that time, so I only expect that to continue.  I don't know the future, but I know it is going to be just fine.  

Joshua's Doctor has decided that he doesn't need to see him again for 6 months now.  We were on 3 monthly appointments since Joshua's CP diagnosis, but he is doing so well now he has been bumped back to 6 monthly.  Of course, he said if I need anything from him or anything changes then just give them a call and they will get him in sooner.  Well the nurse put us down for January, which is less than 6 months, but I guess after that it will be mid year for the next one, but seeing the visiting Rehabilitation Team in March.  So I guess for the rest of the year, we might just have our regular therapy appointments and that is it!!

A random picture that has nothing to do with this blog post but still true.  LOL  
A picture of my beautiful Boy.  Cos he is awesome, so why not! :)  



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