Short stay in the Mater Childrens last week

Very distracted week as far as ABR was concerned. lots of interruptions. On Tuesday we checked into Hotel Mater Children's Hospital. Harri was required to spend 2 nights under EEG observations. This was to help clearly diagnose his epilepsy and make changes to his medications if necessary. The down side is he needed to be sleep deprived ( very tired). It took us the rest of the week to get right again.

We are also trying to read a book that was recommended to us, "The Brain That Changes Itself" by Norman Doidge. We have found it initially a very interesting read. It is a collection of research and success stories for neuroplasticity.

Finally

Good news this week, Harri finally got rid of the cast. It was replaced by a splint that can be removed for bathing. He had his first good night sleep last night. We are getting more ABR done, because of better positioning.

We will have to interrupt his sleep for a short hospital stay this week, Tuesday and maybe Wednesday nights. They will be performing EEG tests during his sleep to eliminate epilepsy as a part of his neurology problems.

We also met with a new neurologist to discuss DBS (deep brain stimulation) as a possible treatment option for Harri's recovery. Unfortunately there is not enough evidence or research into this treatment for brain injuries yet. But the Doctor believes that there will be lots of development in this area over the next 3 to 5 years. There is a small chance that this could be a possibility for Harri.

regards Matt

good weekend away on the farm

I packed up Harri and the family and went away to a farm for the long weekend. Thank you to David, Lorraine and family for putting us up. Despite still having the cast on his arm, we got in and did lots of farm work. Moving cattle and sending them through the dip for ticks. Finding, cutting and moving fire wood. Campfires, star gazing, barn christening party and BBQ's were all part of the action. Motor bike and car lessons in the paddock for Harri's brothers. Fishing for fresh water crayfish ( yabbies ) in the house dam. A visit to Imbil to see the Valley Rattler ( old steam train from Gympie) and a visit to the Kenilworth Cheese Factory and a visit to the Eumundi markets. What a lot to fit into 3 days. Harri a little tired after such a big weekend, but looking forward to hopefully getting the plaster off, for good, tomorrow (tuesday). Regards for now Matt

it's a long road

Harri saw the orthopedic specialist in the fracture clinic this week, and he wants Harri to have the plaster on for 2 more weeks. It has been a long road for this injury recovery, from mid January to end of April.

I recieved a phone call back from one of the directors of Emotiv, and had a long discussion about the application of the epoc headset. He has given me a contacts in brisbane who may be able to help adapt the product to suit Harri. Stay tuned on this one.

We had a visit from Harri's Auntie Shelly for 4 days. this caps of a good year for visitors Maria and Nanna over Easter, Nathan, Nicole and Conner in February, as well as Neil, Carol and Grandma in late February.

We have acquired an appointment with a pediatric neurologist at the end of April, to discuss deep brain stimulation as an option for Harri's recovery.

We are expecting a quite week ahead, hopefully get our head down and a lot of ABR done.

Regards Matt

April review

We have recently returned from our ABR review in western Sydney. The trip and stay was a lot more comfortable than previous trips, as Kim joined us on our trip to Sydney for the first time. A new location for the clinic again. But we had more space for the clinic than any of the previous clinics I have been to in the past. The accommodation was very reasonably priced. We were given a sizable discount because of the ABR clinic being there. It was a bit further to commute for us from the airport. The staff were great at the Chifley at Eastern Creek, they really looked after us.

We were pleased with the outcome of the review, and are setting about our plans to accomplish as much ABR prescription exercises in the next 4 months. Harri showed that he had good gains of strength in his abdominal and upper back. This could have resulted in a good review in the weight bearing tests, but alas the cast and broken arm prevented us from doing any of these tests.

November 2009

April 2010

The line across his abdomen was more of a straight line in Nov 09, and now tends to follow the rib line up in the middle, this displays improved underlining strength in the core muscles.

There was not much spare time for anything else while in Sydney. But we did take time to track down the offices of Emotiv, and now have a clear contact name and number for their Sydney operations. I hope to establish discussions with their researchers to track down developers using the headset to work with communications for people without a voice or other form of communication.

On return from Sydney, Harri started coming down with a bad cough. This rapidly developed into a productive cough with high 38 temps. We are working hard to avoid a chest infection.

On this coming Tuesday Harri should be finally rid of his cast, x-ray going well.

We will keep you posted.

Regards Matt

Following a new study for an old drug

Hello All,

A conversation with a friend of Kim's, resulted in myself looking into a study posted in the Medical Journal of Australia in 2008, about a old drug called Bethanechol. Not normally used for cerebral palsy or muscle spasms, this study shows interesting results. We need to check to see if it will effect his seizures adversely. But currently the Neurologist is investigating whether Harrison has epilepsy or if his events are a result of muscle spasm and twitching

Here is the link http://www.mja.com.au/public/issues/189_05_010908/letters_010908_fm-2.html

I don't think there has been a study with children yet. But our GP believes it worth while talking to the Neurologist.

Regards Matt

a busy start to the year

Boy, what a start to the year. Getting the children started at school and into routines with school, sport and other social activities. Harri also having a lot of specialist appointments and the complication of a broken arm, which needed to be pinned. All this meaning i have been slack in keeping up the posts.

Before you know it we will be in Sydney for our next ABR review. A first this time, we will be joined by Kim, as the QLD holidays will coincide with clinic.

Regards Matt