Tuesday, November 29, 2011

Medical Report, Funding and Therapy

There is a grant available to us called the "Better Start for Children with Disability" grant.  It is available to Children with Cerebral Palsy, among other diagnoses and gives us $12,000 to use towards therapies and equipment.  I have actually heard that we might get more than that, because in Darwin apparently you also get a remote area allowance.

So, to apply for this, I need to have proof from a Doctor that Joshua does have Cerebral Palsy, so at our last visit with his Doctor, I asked him if he would write me a letter with his diagnosis so that I could apply for that, and of course, he was more than happy to do so.  I received it in the mail this afternoon.  I always find it interesting to read these things...

Medical Summary 

Primary Diagnosis:
1.  Cerebral Palsy
2. Spastic Quadriplegia

Associated Diagnosis:
1. Hypoxic Ischemic Encephalopathy at birth.
2.  Severe Neonatal Hypoglycaemia.
3.  Neonatal Seizures.
4.  Neonatal hypertension.
5.  Intubated and Ventilated for 3 days.
6.  MRI Scan extensive psuedolaminar cortical necrosis consistent with HIE.
7. Microcephaly

Joshua is an 18 month old boy with Cerebral Palsy and Spastic Quadriplegia.  He will need significant input from a range of medical and allied health professionals over his lifetime. Early childhood is the critical period of development and it is essential that he has access to the best available intervention services.  Currently Joshua is under review by the Department of Paediatrics at the Royal Darwin Hospital and the Carpentaria Early Intervention Team.  He is on the list to see the visiting Rehabilitation Team from the Adelaide Women and Children's Hospital.  

Joshua is making good progress and his current medical issues are gross motor and fine motor developmental delay and are consistent with his Spastic Quadriplegia.  He has not had any further seizures and is a bright and interactive child.  In the future he will need further support with his communication as well as ongoing support for his motor development.  

Joshua is awaiting fitting of orthotic devices for both feet to assist with walking and avoidance of contractures.  I will be reviewing him again in February and will happily provide any additional information that is required.  

Dr Peter Morris
Consultant Paediatrician
Royal Darwin Hospital
He wrote a lot more than I thought he would.  I was just expecting a letter saying.  Yep, the kid has Cerebral Palsy cos I said so!

So now I can make an appointment to get the ball rolling to get this funding...

I was just told yesterday by Joshua's therapist Andy, that over the Christmas break, (next week is the last week of Therapy until I think February next year) there will be some people coming to Darwin to run a one week intensive block of therapy known as Conductive Education.  I have heard really good things about this, and I really want to do it.  I don't have all the details yet, but I would have to take the week off work to do it.  I would do it though... I think it is a good opportunity and worth taking time off work.  Not sure how the day care parents would feel about that though.  I am awaiting more information, and right now, I have no idea how much it costs.  A lot, I am sure.  She told me that I can use the Better Start funding for it.  I am not sure if I will be able to get that sorted out quick enough though, or if we were to pay for it ourselves, if they would reimburse it once it was sorted.  (I am betting not...)  So yeah, I will have to see what the price is, but I am really keen...  Especially as I feel the opportunities to do these sorts of therapies are pretty limited in Darwin, so when the opportunity comes up, it makes sense to take it if possible.

As a follow on from the Orthotics, Joshua got his AFOs yesterday.  He was so good.  We put them on at the hospital, went to the shops to buy him some shoes, went to Therapy, then he took a nap in the car...  he never complained once about wearing them.  Today, he wore them for about 2 hours in the morning, and another 2 hours in the afternoon.  I think that is pretty good since he is just getting used to them.  He did start getting a bit sick of them after 2 hours, so I took them off to let him have a break.  Ideally, we will build up to wearing them all day.

Here are some photos of him/them:

Joshua wearing socks, AFOs and Sandals
Socks and AFOs
The AFOs...  with their lovely flouro green velcro!  
In other news.....  The Amazing Joshua is going to be a big brother in June next year...  Here is a photo of him in his 'Big Brother" T-shirt that I used to announce on Facebook yesterday.

Joshua is in training for a new role
I am sure I will write more about the pregnancy in blogs to come...  but for now, that is it :)

Friday, November 18, 2011

Hearing Test and 1st Orthotics Appointment

On Wednesday, Joshua had his 4th Hearing Test.  (Not including the newborn screening) He did pass the last one he had, but due to being sick at the time, was showing some Eustachian Tube Dysfunction.  (Which was also the case at hearing test number 2) so they wanted to make sure that this was not an ongoing problem which would require referral to an ENT.  Thankfully, he passed his hearing test, no problems, and his ears were healthy.  So now we do not have to go back until he is 3 years old.  With little kids, they just play the sound through speakers, and although they play the sound from the left side, or the right side and the child looks towards the sound, it doesn't actually mean they are hearing it from the left side or the right side.  They can just hear from whatever ear, and their main aim is to ensure that their hearing is sufficient enough for the development of speech.  When he is 3 though, they hope to be able to use headphones and to be able to specifically test each individual ear.  So that is great news that we don't have to worry about hearing tests for a little while now!

Then this morning, we had Joshua's first orthotics appointment at the hospital.  Our Physio also met us there for the appointment.  The orthotists name was Andrew, and he was really super nice.  He took a look at Joshua's feet, and watched him stand, to get a good idea about his issues.  Then he started making the casts of his legs.  He will use the casts to make his AFOs (Braces).  Joshua was a very good boy and sat nicely while the casts were made.

Putting a special "sock" on to go under the plaster
Then he put a piece of plastic down the front and began to wrap it with plaster
Joshua watches closely at what is happening to his leg!
And he really wants to try and pull the plastic out!
What do you think about all this Josh?
Close up of the plaster
Andrew smoothing the plaster
Starting to cut the plaster off
Andrew cutting the cast off
Both legs done!  
Joshua was a very good boy and sat through it all without making a fuss.  Andrew commented on what a cruisy kid he was and Maggie, the physio, told him that the kids she had referred to him that he was seeing next week would not be as good as Joshua, so he shouldn't get too used to it.  Hahaha.

Basically, he explained to me that the bones in the feet are not fully formed until about 5 years old, but when a child has significant issues with muscle tone, those muscles can affect the growing bones and cause permanent problems.  So the period up until about 5 years old is really quite critical in terms of providing the feet with the right support to be able to grow and develop properly.  He told me that Joshua's problems (in terms of his foot positioning/pronation) were "fully correctable."  So, basically Joshua will probably have to wear AFOs for at least a few years.  And because little kids grow so quickly, we will probably have to repeat this process about every 6 months for a while.  

We go back on Monday 28th to fit the actual braces and hopefully take them home that day!

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.

Monday, November 7, 2011

A Day in the Life...

Today Joshua had therapy, as he does every Monday.  I took a few photos today.  I wish I would have taken more, but it is hard because I also have to play an active role in therapy.

Here he is with his Primary Therapist Andy, pushing him in the swing.

She sings to him while she swings him, and then when she stops, she encourages Joshua to communicate that he wants to go again by signing "More".  The Auslan sign for more is tapping a clawed hand on your chest, but sometimes Joshua kicks his foot.  Andy believes that when Joshua does this, he is also signing more.  She says it is common for children to adapt signs and to even sign with their feet rather than their hands.  I am not really sure...  maybe he is just kicking his leg?  LOL  But both her and the Speech Therapist we saw last week believe the leg kicking is also a sign for more.  Confusing isn't it.  When your child doesn't communicate verbally, so you try and use sign language, and then they go and make things up as they go along.  It is horrible to think that you might be missing attempts at communication because you are looking for one thing (the right thing) and they are doing something else to mean the same thing.

Here he is sitting in the swing.  He wouldn't smile for me, he was busy making funny movements with his mouth.

Joshua also tried climbing up some foam stairs.  I was shocked at how well he did.  That is not to say he was able to climb up them, because he can't, but the attempt he made was the best I've ever seen.   Andy helped him up by helping him to move his legs and I encouraged him from the top.  Once he got up to me, he loved throwing himself off, for want of a better word, a padded table, and onto a huge (HUGE) Cushion.  He did it several times, he thought it was so much fun, and he is doing so well at trying to crawl over things like this big cushion.  It is not easy to move your body over something that is soft and squishy and unstable, it is a lot more work than just being on the flat ground, but he is getting so much better at it.

He was also really loving the tunnel today.  You can see it in my picture below.

Just last week he needed help to get up and into it.  And then once he got to the other side, he cried like he was too scared to try and get out on his own.  Today, he was very bold with the tunnel.  He easily got himself up into it and crawled (hopped) quickly through it and out the other end.  He was going so fast he was face planting on the floor at the end.  We had to try and show him to use strong arms on the floor to support himself in getting out instead of lunging straight out onto his face.  He wanted to do it over and over again.

Then he was playing on the rocker.  In addition to rocking, we were also using this to practice going from sitting to standing.  He was doing great.  Andy thinks we need to be working on sit to stand more.  Although Joshua already pulls himself to a stand, he does so with very poor technique, and she thinks working on sit to stand more will help build up strength in being able to push up through the legs and ultimately help him learn to pull to a stand properly.

You can also see his little shoes here.  We are still waiting to be fitted for AFOs, and in the mean time, I was told to buy him some high top canvas sneakers.  We just got them a few days ago and Andy loved them, she thought they were great.  Although they don't provide total ankle support or completely correct foot positioning (he tends to turn his feet outwards) they are very good at keeping his foot flat...  and not having his toes curled into all sorts of positions, with his foot bending in half and trying to stand up on the top of his feet instead of the soles of his feet.  So ultimately it has made standing practice easier because he doesn't require as much assistance in maintaining his feet when he is wearing the shoes.

I have just learned that the Physio is going to be meeting us at the hospital on Friday for his appointment to get the Dr to sign the referral for his AFOs.  Man oh mighty it has taken a lot time for them to get this organised and I was planning to complain to his Doctor on Friday, so lucky some action is being taken.  Apparently they also want him to have resting splints to wear at night time.  Poor Bugger.

Here he is with Maggie the Physio under the climbing frame.

It is a bit of a problem solving activity for him to have to work out how to get through the openings to get in and get the balls and balloons.  Initially it was also physically challenging to get over the bottom pipe and get in.  We've been doing this for a few weeks now though and he has that part down now.  He LOVES balloons and tries to munch on them.

Andy and Maggie are both scared of balloons popping, which I find quite amusing, so they are always worried he is going to pop them!

We also did a bit of play on the iPad.  Popping bubbles, playing music, making fireworks and even a funny bird app.  When you speak, the bird repeats back what you say and you can make it sing by pressing piano keys.  You could also feed it food.  And somehow make it blow up..  Yes..  the bird blows up into a puff of scorched feathers and smoke.  Joshua was good at making that happen...

So this is a typical Monday at therapy for us.  Today we also went to the hospital and had Joshua's first lot of hip X-rays done.  I was a bit worried as I had been told before hand that it was best to have two people to hold him down, so I made Rod come along in case I needed him with him.  As it turns out Rod held him by himself and it was fine.  He didn't even cry, he just yelled a bit to let everyone know he was annoyed!
Afterwards he got his first sticker....

"I Sat Still for my X-RAY" !
I guess I will update again on Friday after our hospital appointment if there is any breaking news to add :)