Update On Joshua

Hello all!

I haven't even started to write chapter 9 of Josh's story yet, so unfortunaltely you'll all have to wait a little bit longer to read the next installment. We've had a busy week so I'll fill you in on all the details.

On Monday Josh had a follow-up appointment with neurology at CHEO. He had been seeing Dr. Macmillan, but he is in Boston receiving training in some sort of diagnostic technique and is gone for a year. Josh was seen by Dr. Doja instead. We had met Dr. Doja while Josh was admitted at CHEO but we hadn't seen him since Josh was 6 weeks old.

So first of all, Josh was weighed before his appopintment and he is now 22 lbs. That's great! He's doing so well. His head circumference is only 42.5 cm (17 ") which is below the 3rd percentile, but his head is growing so that's the main thing.

Dr. Doja is really pleased with how well Josh is doing. Everything seems to be on track in terms of development and he is glad to hear that there have been no signs of seizure activity. He did have a couple of concerns though. He is concerned that Josh seems to be using his right arm/hand for fine motor movement and his left arm/hand for gross motor movement. He would like to see Josh using both arms equally.

He also raised concerns about the likelihood of the seizures returning. He said Josh is at 'high risk' for the seizures to return because of the brain damage. Some areas of his brain are so badly damaged that the brain tissue has actually atrophied (shrunk) and there is quite a bit of scar tissue present. None of this is new information - I was aware of this already as I had seen the MRI images taken last December. Because of this increased risk for developing epilepsy Dr. Doja said that they will continue to see Josh in Neurology. This way if the seizures do return we will be able to access neurology's services right away rather than being put back on a waiting list.

This was a bit of a surprise. I thought this would be our last visit with the neurology department since Josh is also followed by a neurologist/child development specialist at the Ottawa Children's Treatment Centre (OCTC). Oh well, it won't do Josh any harm to be followed by 2 neurologists. Our next appointment with Dr. Doja is on May 6, 2009 and then he'll go once a year after that.

On Thursday Josh had an appointment at the OCTC with his new occupational therapist, Laura. He had seen an OT 4 months ago and she did a developmental assessment but she ended up accepting a new position at the centre and we had to go back on a waiting list. Anyway, his new OT Laura did a follow-up on the developmental assessment to make sure that he was still on track and to check for any discrepencies between the right and left arms/hands. Good news! He's right on track with fine motor development for his age and she hadn't noticed any major discrepencies between the right and left hands. She did notice that he does prefer to use his right hand to complete tasks, but will use his left hand if encouraged or if the task requires two hands. This is an improveent from his last assessment, so I am very pleased with how things are going. Josh just seems to be beating all the odds. It doesn't look like he's going to let the brain damage slow him down one bit!

I also received a call this week from someone at the OCTC informing me that Josh has been accepted to the infant development services department. He's been on a waiting list since January. I'm not really sure what they do, but they've signed us up for a parent-child group of some sort that runs every Tuesday afternoon for 10 weeks. That group starts on Sept. 23 so it should be interesting.

I guess that's all to update for now. Thanks for checking in!