Alistair and I had a great trip this time down in good ol' Vancouver. We flew down the 12th and returned on the 17th. This trip really did not feel so medical. For one the appointments went all quite well with no drastic or unexpected news. Plus the hospitality was superb and I really got a chance to chill out after all the appointments. On Monday Alistair got another EEG (basically an electrical scan of the brain) and then he saw the neurologist, Dr Connolly. Fortunately, I feel very confident with Alistair in her care. She reviewed the EEG and informed me that he still has seizure activity on the top aspect of his brain but it is alot less activity then before. I guess he was also on a low dose of Lamotrigine for his weight ie 30 mg a day where I believe she said he could be on a dose as high as 150 mg a day. So we have lots of play room. So we are continuing to decrease the one med and increase the other. Ooooo yes and since he had that cluster of seizures he hasn't had anymore and seems to be quite bright and bushy tailed apart from the darn old teeth pushing thru and reeking havoc. Tuesday Alistair saw Dr Versher (wonderful lady) who is the plastic surgeon and feels he's really doing well with his hands. So yahoo I think we're free and clear in the realm of hand surgery. (THANK GAUD!) The OT Kim (another great person) also lengthened his splints as his fingers were falling over the end. But it looks like another 6 months max and he'll beable to say adios to those things. Its amazing really even though its such a minor thing they still have to go on every night and the soft ones go on as often as I can remember during the day. Just to have those off the daily "to do list" would be brilliant! After this appointment Alistair and I jumped on the local bus system and headed to Granville Island for some hat shopping. I must have been in a great frame of mind that day as I chatted up everyone in sight. Its a good indicator to me how I'm doing mentally! So ya good stuff....Wednesday we say the Optitrician Dr Lyons (nice gentle man) who said his retinas were looking good (whew) and that he has a slight stigmatism and slightly far sighted so we are going to try some temporary glasses. Then we saw Dr Matsuba. He's a developmental pediatrician at Sunnyhill Hosptial with a specialty in visual impairment. This was an interesting appointment as he was able to use these cards to determine how well Alistair could see. They had an aproximately 6 inch box on them with black and white lines. The first card maybe had 4 black lines in that space and each card had more and more lines where I finally was going cross eyed. Anyhow he basically said he isn't blind but he is on the cusp of having vision issues. Alistair actually preformed really well. So I was delighted but Dr Matsuba was slightly disappointed as I guess there is great funding out there for kids who are dealing with hearing and sight issues. Anyhow we will follow up in a year and go from there. So as for his sight I've been told he can see but he has to be trained to use his vision and there is no program to help with this at the time being. So thats the only thing where I felt a tad overwhelmed....actually once I got home I felt it quite a bit just because now I not only have to stimulate his auditory nerve for his hearing, I have to work with his motor skills and help create "super highways" of the brain, I have to work to enhance his speech, and I have to stimulate his vision to teach him to use it appropriately. So ya ACK flippin ACK! BUT isn't it just amazing that we have all these resources in Canada to access. I also find by having these scheduled appointments it helps one keep on track with the plan when you just feel like falling off the wagon for a bit. Can you imagine Alistair's existence without any of them? It almost makes me nauseous thinking of it.
So now for the hosptality down there! I stayed two nights with Mrs Lovely Jan-Louise (the nicu nurse my bud up north connected me with) This women literally opens her doors and makes me feel so welcome its astounding. The only problem with the lady is we always get into these conversations on how we are going to solve all the worlds problems and then I end up going to bed at 2:30am and Alistair decides to wake at 4am.....hmmmm not so great! But hey fun till the morning arrives. The thrid night I stayed with Kim, Don & Grady. Grady was born 8 days after Alistair at 25 weeks gestation and man is he a little trooper. Kim and I connected in the pump room at Childrens and have been buds ever since. We always try to connect when we're down and its fun to see the progression of our little men. Grady wanted to use Alistair as a big teether this time so we had to be on the alert! But it was good times. Great food and fun location. They live right down town by Denman street so we were out in English Bay at the beach and just out and about people watching (which is heaps of fun in that area). Then the last two nights George and I planned it so he'd be down on Niatross at the same time. That was fabulous. We powered (due to a lack of wind) over to Bowen Island for the night. Alistair seemed to really do well with the swells and movements of the boat to the point he just snoozed away. Its like being in a huge rocking chair. We just put up the board that one would use in stormy weather to keep you on the bed and it was a perfect little "crib"It was so nice to get out on the ocean and have the wind blow the cobwebs away. The next morning George jumped overboard in his gear and scrapped the haul and then we went for a little hikaroo with the stroller. We had promised Jan Louise a sail in the harbour that evening so we sailed back to Vancouver and picked Jan up and headed out. Unfortunately it wasn't good sailing weather when the evening came about but she seemed to still love the experience as we puttered around to English Bay and Granville Island.
So ya...thats my long winded way of saying we had a nice little brain break down in the big city! Now we're home and getting ready to head to Lake Winnipeg where his Mom and Brian have an island. It'll be a nice getaway for all of us.....hope you're all getting brain breaks this summer too! Cheers Julie