Monday, August 29, 2011

New Therapy and W-Sitting

As I have mentioned previously, we finished up with the Children's Development Team a few weeks ago, which is where we have been receiving Therapy since Joshua was 5 months old.  After Joshua's official Cerebral Palsy diagnosis, the Doctor wanted him to be referred to Carpentaria Disability Services, which is an early intervention service for children that have higher support needs than those that are catered for with the Children's Development Team.
Last week, we had our initial assessment done with the Pyschologist.  I am still waiting on the results.  He initially told me he'd call me with them on Friday, but he didn't call on Friday.  He called today and said he will have the report ready in the next few days, definitely by the end of the week.  I am a bit impatient for the results, but I don't have much choice but to wait!  His assessment was done using the Griffith's Scale, which is the first time we've had this particular assessment.  (All previous assessments were done using the ASQ).  The report from the Griffith's Scale is apparently much more detailed and will give the age level that he is functioning at for each of the developmental areas.  I am looking forward to seeing it.  When you have a child with developmental delays, a common question is "How delayed is he?" and until now, I haven't really had an official answer for that.  Of course, given my own knowledge of child development, I can make my own approximation, but I am keen to see what this assessment says and how it compares with what I am thinking in my head.
Carpentaria also have a visiting Physiotherapist that comes up from Adelaide every 3 months.  Apparently she is a very well respected Paediatric Physio, and she is coming to Darwin this week.  She is going to come and see Joshua on Friday, so that should also be interesting.
Today, we had our first therapy session with our new therapist from Carpentaria.  Her name is Andy and she is an Occupational Therapist.  She will be Joshua's primary therapist as part of a multidisciplinary approach to Therapy.  They believe it is best for each child to form a good relationship with one particular therapist rather than see many different people each week, however, other therapists will be called in as needed.  Andy was very nice and interacted well with Joshua.  It almost amuses me to say that, since the model of therapy they use is called DIR/Floortime.  And they also use something else called the Circle of Security.  If you ask me, these are just fancy names for saying that they base their therapy on theories of Child development.  Which seems kind of obvious.  LOL.  Mostly though, they are interested in attachment theory and the fact that children learn best when they have a secure base to explore from, so they focus largely on establishing positive relationships with the child and supporting such relationships between the parent and the child and using those relationships and interactions to build on the child's development.
If anybody is interested, I found an article a few weeks ago about DIR/Floortime, it is not a bad read.
DIR/Floortime - What is is and isn't.
Basically, they focus on development from a holistic point of view, which is quite interesting (yet logical!).
So, I discussed with Andy about getting AFO's for Joshua (braces for his legs), and she also asked me if we'd ever had input from a Speech Therapist.  I told her No, that we had been placed on the waiting list at CDT when he was 10 months old, and were not seen in the time we were there.  So she is going to arrange for the CDS Speech Therapist to come and see Joshua and give some input and also to do a feeding assessment to check if he is having any feeding issues that might need to be worked on.
I also talked to her about W-sitting.  This is a type of sitting that is often favoured by children with Cerebral Palsy as it is a much more stable way of sitting.  Unfortunately, it is also quite bad for the hips and many people treat W-sitting as though it is the devil and should be avoided at all costs because your child will damage themselves.
This is an example of Joshua W-sitting.  Basically the legs form the shape of a W.
I asked some other HIE parents about it, and basically the replies were a resounding NO WAY.  That they were told to never ever ever let their child sit like that and if they did, they should correct them right away.  This was not actually the response I wanted.  Why?  Well because at 15 months of age, Joshua is still unable to get himself into a sitting position independently.  That is, a real sitting position, on his bottom.   I don't think there is any real physical reason to why he can't...  I think he should be able to, given the other things he is doing.  But he doesn't.  We've been trying to show him/help him for months and months, and he still doesn't do it.  He does however, get up on hands and knees and push back into a W-Sit.  This has opened up a whole new world of play for Joshua.  Because he can get into this position independently and can use it to play with toys upright, rather than having to play from his tummy or wait for me to sit him up.    So, you see, it doesn't sit too well with me to have to prevent him from doing something that gives him so much independence.  I wanted somebody to tell me it was ok to let him sit like that.  And I didn't really want to bring it up with one of his therapists and have them tell me under no uncertain terms that I had to stop him from doing it, because then I would just feel guilty when I don't.  Let's face it...  I have 4 other kids to look after 4 days a week..  I really don't have time to be following Joshua around and stopping him from W-sitting every time he does it...
So, I talked to Tahnee, the physio at the Children's Development Team on our last day there..  she told me that if he was only sitting like that to transition between positions then it was ok, but if he was sitting like that for long periods then it would be best to encourage a different position, even if it was just by bringing one leg to the front. Today, I spoke to his new therapist Andy, about the W-sitting.  She was not too concerned.  He does sit and play like that..  but he is 1 years old.  And he has the attention span of a..  well.   of a 1 year old!  Which really isn't that long.  So he really only sits like that for a few minutes before he is off again doing something else.  Plus, she noted that he isn't just sitting there like that, but he also gets up into high kneeling while doing something and then sits back down in a W-sit again to play a bit more and then he is off again and moving.  He is a busy boy.  So yeah.  Joshua W-sits.  And I don't make him stop.  And I don't feel bad!
So that is it from me, hopefully I will be updating again soon about the results of his assessment and how things go on Friday with the physio!

Wednesday, August 10, 2011

Hearing Test - Take 3

So, if you have been following our hearing test saga then you would know that Joshua passed his newborn hearing screening, and then, due to being in a high risk category, had to have a follow up hearing test at around 9 months of age.  (He was actually 10.5 months when it was done, but never mind)
The first test was basically inconclusive because Joshua was unable to condition to the test.  It left me very upset and frustrated because it was quite clear to me that the method of testing (Visual Reinforcement Orientation Audiometry) just wasn't suitable for Joshua.  This type of testing is generally considered suitable for infants from the age of 7 months.  Upon being unable to condition to the Visual Reinforcement test, they tried using Behavioural Observation Audiometry, which is used for babies younger than 7 months.  Although this was more successful, he still only responded consistently to sounds around 50 decibels or "LOUD CONVERSATION".  I also felt that the way they were trying to distract him during the test was counterproductive to trying to get a response from him...
We had to go back a second time in the hopes that he would be able to condition to the Visual Reinforcement after a couple of months had passed.  He did do much better, but the results were still consistent with mild hearing loss.
Today, a month after the second test, we went back for round three.   I wasn't sure what they were going to do this time, as they told me on the phone they wanted to do some *different* tests to get a better idea of what was going on with his hearing.  As it turns out, they didn't do anything different, it was the same Visual Reinforcement test.  This time however, we had a different Audiologist and also a different girl who was assisting her.  And....  JOSHUA ACED THE TEST.   He looked at their stupid puppets and responded to the sounds every single time.  Unlike the last times, he totally understood what he was supposed to do.  So..  they might say that type of testing is suitable from 7 months....  but it took my son until he was 14 months to understand 100% what was expected of him.  So frustrating, as I have been telling them all this time that I had NO concerns about his hearing, but of course they make you paranoid and doubt yourself.  Anyway, I talked to the Audiologist after the test and she told me he totally passed and responded to every sound level that they play at this age.  I told her he did WAY better than the other times, and that my feeling all along had been that the testing had not been appropriate for Joshua's ability and not that he had a hearing problem.  She even mentioned something about how when he was too interested in the toy that the assistant had, he didn't respond but when she backed off on the "distraction" he paid attention again.  And I said "Yes, that was my issue with previous tests too, because they were actually giving him the toys and he was banging them around and making noises and not paying any attention at all, so it was really no surprise that he wasn't listening" And she said "Well it sounds like everybody did a better job today then!"
Anyway, the last time that we went he had a bit of a cold and had fluid in one of his ears.  Today was the same story (although that first cold cleared up and this is another one!)  So she said they would like to see him again in three months, just to basically monitor the fluid in his ears.  She says it is totally normal and unconcerning for them to find that given he has a runny nose, but that they want to be sure that it is not an ongoing problem...  if he was to constantly have fluid in his ears, they would refer him to an ENT for another opinion.  Interestingly, this Audiologist kept going on about how his particular Paediatrician at the hospital is "Great with ears" and knows "all about ear problems" so if there was something wrong then he'd find it at our hospital visits.  Oh, and she also said to me that usually, when there is a hearing problem associated with a lack of oxygen at birth/brain damage then they usually find problems much earlier on than now with things not working as they should.
So anyway...  there we have it...  a hearing test that backs up what I have known all along- HE CAN HEAR!  :)

Friday, August 5, 2011

I am getting better at this!

Talking that is.  About what has happened to us.  Having this blog is a great outlet for me because I can get everything out...  in real life though, particularly with strangers or people I am not close with, I tend to avoid discussing things.  I am truly happy and 'OK', but there is so much raw emotion that sits just below the surface, and if you accidentally open the flood gates, it can be difficult to stop what might come pouring out.  That might be ok sometimes, but generally speaking you don't want to turn into a blubbering mess in the line at the post office if someone asks you a question about your child.  Sometimes, my strategy has been to lie to people, because it is just easier.   Conversations like "Oh he is so cute, how old is he?" and when I tell them they immediately say "Oh, is he walking yet?"  No...  no he is not walking.  Not even close.  But if you give an answer like that, it inevitably results in more questions, so sometimes I just smile and say "Yeah".  Truth is, I am never going to see that person again, so I don't really need to give them his life story.  Sometimes it feels wrong to lie though, like I am doing him an injustice.  Because honestly, my goal in life is to show the world how awesome he is despite his challenges and not to pretend that they don't exist.

So, today we had an appointment at the hospital.  It was essentially a follow up to our last appointment where we were officially given a diagnosis of Spastic Quadriplegia Cerebral Palsy.  I think in a lot of ways, I am a freak of nature or something, because I am so ok with this diagnosis.  I have honestly not shed a single tear about it.  I honestly got all of those feelings out months ago.  And I find it hard to understand when I see other parents talking about their child potentially getting a CP diagnosis down the road.  Logically, I understand, and I try to remind myself that I have in fact been at that point myself in some shape or form. But when I see children who are doing much better than Joshua and their parents worrying about a CP diagnosis in the future, I really don't understand.  I feel like saying "what is the big deal?  My kid has a CP diagnosis and he is the most freaking awesome kid in the whole world?!  What are you so worried about?!"  I don't say that of course, but that is truly how I feel.  (And I apologise if you are one of those parents and are reading this and find it insensitive of me to say this...  I truly am not discounting the very real feelings of worry that you have for your child, I just want everyone to know that getting a Cerebral Palsy diagnosis is not the end of the world, and it doesn't even have to be a bad thing!)  Nobody really wants their child to have Cerebral Palsy...  NOBODY.  And I realise that some parents with children on the severe end of the spectrum will probably be annoyed by my positivity at times, because their reality is again, different to mine, but here is my Joshua, in the moderate range of things, and life is good.

Anyway, back to our appointment and what I was originally going to talk about before I got a bit side tracked there.  We were in the waiting room to be seen and there was a little girl in there with her father.  Joshua was army crawling around, pushing some toys around when the father asked me how old he was, but instead of asking how old he was, he said "Is he 6-8 months old?"  And I said "No, he is 14 months" and he said "Oh, does he walk?" and I said "No, not yet"  To which the guy replied, "I didn't think so.  He doesn't look like he is even trying to walk?"  And I said "No, he has cerebral palsy, so he is delayed"  Interestingly the guy seemed to have a bit of a working knowledge of CP though I didn't ask him for his qualifications on the subject Hahaha.  So after that he said "I thought he looked older, because he is big and his facial features look older and he has a lot of teeth, but he behaves like a 6-8 month old"  And I was like "yeah" and then he said "Does the cerebral palsy affect his legs and not his arms?" and I said "No, it affects all of them, but his legs are worse than his arms" He kept asking questions...  about what caused his CP and I found myself telling him that he suffered from a lack of oxygen before he was born which resulted in extensive brain damage, that he spent 2 weeks in hospital after he was born.  He asked me if he was premature and I said No.  He asked me other questions about his development.  It was kinda weird and so nosey really when you think about it.  But the amazing thing about this, is that I conducted this conversation and did not become upset while sharing these details.  This is quite huge for me.  Oh and this random guy told me that Joshua was a very busy boy and that was a good sign.  (Maybe I really should have asked him for his qualifications...  LOL)  

Then we went in to see the Dr, and again, I managed to talk to him and stay cool as a cucumber the whole time.  (Ok, I admit that I felt myself falter a couple of times (the flood gates started to creak open, but I was able to quickly shut them before anything got out!!)  LOL  So basically the main parts of this appointment was that he wrote up a form for me to take Joshua for a hip x-ray, which he wants done before he sees him next (in three months time).  The reason for the x-ray is because the high muscle tone can cause problems with hip dislocation etc, so it will need monitoring.  He said yearly x-rays, unless of course they show a problem, which might change the course of treatment.  He also filled out the medical report that I need for Centrelink in order to get Carer's Allowance.  This is a non income tested allowance that will give me $110 a week, plus a health care card to help with the cost of medical expenses, plus an annual payment of $1000 to help with his care.  It will be nice, because I am self-employed, I do not get any paid leave.  Any time I take off in order to take Joshua for appointments is all unpaid, and I haven't won lotto yet, so I will appreciate this little bit of help.  
It is always interesting to see things in writing though...   The report says:
Primary Disability or medical condition of the child:
Cerebral Palsy
-Spastic Quadriplegia
-Developmental Delay
Other disability or medical conditions of the child:
Microcephaly (Severe)  
I am not sure why, but the inclusion of the word SEVERE is what got me there.  Was that really necessary?  LOL   Meanwhile, I was happy because his head seems to have had a little growth spurt, it measured up to a whopping 42.3cm today!!   Not that it is a competition, but as pathetic as his head circumference is (About average size for a 4 month old) I know of other kids with smaller heads.
So apart from those two things, two other interesting things occurred.  I am not really sure how it came up, but I ended up telling the Doctor how I am very active online networking with other parents in the same situation, and so I have been fortunate enough to see the whole range of outcomes from children who are completely fine to children who are severely affected, but that it has been very beneficial because many HIE children do go on to get a CP diagnosis and I have been able to see how well some of them are doing and know that these conditions do not have to be all doom and gloom.  He told me that was great because it was one of the biggest problems that they hear from parents is that they do not know where to go and how to access support, and so I told him that many parents, us included, leave the hospital feeling as though they are the only person in the world for this to ever happen to and that being able to talk to other parents is really invaluable.  I also went on to tell him about the Hope for HIE foundation that is currently being set up.  A website for families to access information about Hypoxic Ischemic Encephalopathy, and get support.   I said that they hoped to have it up and running in the near future and that I will be certainly letting him know all the details once it was, because the ideal situation would be for him to be able to pass this information on to parents as soon as the diagnosis is made.  I told him that pretty much everyone is given a prognosis that is somewhat doom and gloom, but that being able to see all the different outcomes and know that life does not have to be as bad as you were initially told, is great.  And he said "And that is why it is called Hope for HIE?" And I said "Yes, because parents need to have hope for their child"  He said it was really great and was looking forward to getting more information.
He also said to me "I was meant to ask you too, Did you make a request to get Joshua's medical records?". I was kinda thinking oh man, what is he going to say about that.  So I said "Yes, I did".  And he said "And did they send you everything you wanted?"  And I said "yes, I got everything I asked for" and he said "Do you have any questions about anything you read, I know there is a lot of medical terminology in there, and we wanted to make sure that you had an opportunity to ask any questions that you might have after reading it"  I told him No, I don't really have any questions.  My one question is "Why did this happen?" but as I understand it, that is still a question mark.  Which he agreed with.  (I did not tell him that I sent the records to another Doctor to get another opinion, that might be stretching the friendship a bit...  LOL)  But I did think it was really nice of him to bring it up and see if I wanted to talk about anything.  He seemed quite supportive of the fact that I had gotten everything, and I think today he has come to realise just how informed that I am about everything.  By the way, the Doctor that is reviewing our medical records has told me that he hopes to have his report to me by mid-September, so I can't wait to see what he has to say.  I am not really expecting anything ground breaking, because he is limited by the records we have, but still.

Well that is it, another super long post from me!  I will leave you with a picture of my handsome little dude, as I think I need to put more photos on my blog!  ;)