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 :)

1 comment:

  1. He looks adorable in his AFOs. I'm glad you were able to get that funding...what a wonderful opportunity! I hope the Conductive Education program works out!