Hospitality in Vancouver Rocks!

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

Another Party!

On Sunday we had another little get together with some friends and little Mr Man was definitely more on top of his game. His eye contact is coming along and he was proving that this day...which was great.We made another strawberry shortcake since the last one was so yummy and this time Alistair actually laid eyes on the cake. I stuck a bit of whip cream in his mouth and that was that.
We all enjoyed celebrating with a few friends and family.
And Alistair got a bunch of belly rubs from Uncle George!

This little video is of Alistair chatting away in his Dad's arms

Little Man turns ONE!

Its absolutely unbelievable that Alistair is ONE! Wow time flies and so much water under the bridge too! In typical Julie fashion I left everything to the last minute (the afternoon of!). Its funny really I've had 365 days to plan his first bday and I wait until I'm in the grocery store to be inspired (kinda typical of me). So Alistair and I drove around in a nicely conditioned vehicle (thank goodness as it was 30+ deg outside) and went Alistair shopping for streamers, prezzies, & food! We got some fun touch activated musical toys, some snazzy shoes, party decorations, salmon steaks, foccacia bread, whip cream, & lots of berries. As you can see from the pics Uncle George made it home to celebrate with us. It was a fabulous afternoon. I decked out the deck. Made Alistair a balloon bicycle that became a unicycle as soon as I put it down! LOL The only thing is our poor little guy was nackered by the time we started to celebrate as it was bed time! I'm sure he felt all the positive vibes throughout the day. So as Alistair dozed off in his high chair. We consumed a yummy meal off the BBQ and dove into a berry shortcake without strawberries as he's had a bit of a reaction to them. We still sang happy bday, blew out his candlle, and took turns opening his presents. It was a wonderful day of celebration and I have to admit my heart strings were pulled several times throughout the day thinking of the incredible journey our little man has indured over such a short period. He continues to smile, make us laugh, eat copious amounts, and progress at his own pace. June has been a great month for him although his seizures have surfaced once again within the past week. Fortunately Alistair and I are off to Vancouver this Monday to see a slew of specialists, one of which is a neurologist, so I'm sure a new plan will be considered. The great thing is that after we have three days of appointments we're going to join Uncle George on Niatross for a few days for a bit of a brain break!

REMINISCING

I thought I'd add a few pics from his first days. Its astounding really what the human body can endure! We're so in love with him and of course so very proud!

Daddy and Alistair when he was still in his private room with all his life saving gadgets.

Loving being in Daddy's arms.

Yes there was a time Alistair would take a soother....only when on bubble CPAP!

Mummy with her precious little man shortly after surgery.

We all love those little toes... : D

What an incredible journey of precious memories. I love you Alistair so very very much.....

CANADA DAY

Well we started off Canada Day by going to the park in Prince George and so did thousands and thousands of others. So after an hour of standing in line for food and watching people parade around Jason and I decided to go fishing instead! I think Jason's love for a lack of people is somewhat rubbing off on me. My brain was so much happier once we got out of that place and into some real Canadian landscapes. We headed out a back road close to moms, found a little creek, pulled out some fishing rods, got out our Canadian cups, filled them with some Canadian cheer and celebrated Canada in peace! Alistair and I walked down the back road checking out a ton of gorgeous wild flowers. I have to say an Indian Paint Brush (above) is still one of my fav's! I use to suck the little sugar sacs in them as a kid. Anyways I just love the accessibility we have up here to the outdoors. One of the wonderful things about good ol' PG.Alistair continues to progress. The head control he's acquired over the past month is phenomenol. He's needing less and less support up high now. For instance, we use to have to support his neck and now we're supporting his lower chest as shown above. The CDC (child development centre) gave us that supportive chair, the table, and numerous tools to help Alistair progress and they're definitely doing there job. We try to get in the chair once a day for about 30-45 minuites. As for rolling over, he's definitely grasping the whole concept. I almost lost him off the bed the other day not expecting him to make so much progress so quickly! Its wonderfully shocking! One of the vidoes below shows him rolling about on the bed. He loves the freedom thats forsure.

Well I hope you all had a super day! Julie

Father Day : D

What a gorgeous day for celebrating amazing fathers. Jason is definitely under the title amazing father, incredible dad, brilliant dad, caring papa, marvelous father, wonderful dad, ......i could go on and on and on. That man has diligantly stood by our side through all the knowns and unknowns. There is nothing more touching than seeing a father pick up your son with care, love, and belief that the best is yet to come. There is no doubt I loved Jason before but now our relationship has been taken to a whole new level......I can't imagine anything stronger than the love a family interchanges. It can almost make your heart ache and smile at the same time. Anyhow.....Jason is one amazing father and I feel so fortunate that Alistair can call Jason his DAD. So today we are celebrating Father's Day although i really believe all the celebrating shouldn't be held thru until that one titled day a year ...but hey WE ARE CELEBRATING! I pondered away about what I could get for Jason and truthfully there is nothing that makes a bigger impact on him than food. So last night I baked up some strawberry topped brownie torte http://allrecipes.com/Recipe/Brownie-Torte/Detail.aspx and Rugelach with Cream Cheese Filling ( a type of cookie type thingy) http://allrecipes.com/Recipe/Rugelach-with-Cream-Cheese-Filling/Detail.aspx Then this morning we started off with some nice cards, hand delivered coffee, a banana pancake breakfast with real maple syrup, smiles and giggles from Alistair, and a HUGE LOBSTER.

Yes tonight we had our own lobster feast! I found Jason a 3lb+ lobster for him to consume. There was enough left over for lobster sandwiches for lunch tomorrow. Yes thats a true maritimer thing..... So today we can say we were truly bulging with joy...cheers to all those special dads! Love Julie

Milestone Craze!

Alistair's Amazing Physiotherapist~ Lynn Bergman

She's getting him to put pressure through his feet and

touch the musical touch activated toy

He did so well last visit!

Mom getting Alistair to do something similar

Its astounding really. We went to Alberta on a road trip and truly it was a holiday in more ways than one. I mentally decided to take a break and chill out from all the physiotheraphy, speech theraphy, and calorie pushing that I tend to do on a daily basis. I wondered if I'd regret it in the long run as I was concerned he may back track a tad from the lack of consistancy. But it seems to have done the complete opposite! On the trip he decided it was time to feed himself a mum mum cracker (a quickly disolvable cracker) which is huge as he basically has only put a spoon in his mouth. He also decided he'd start grabbing his feet which has been an endless daily routine in trying to make him aware that they exisit. Now he has decided he can grab them with both hands! Anyhow after we got home he suddenly starts rolling over three times before we even get out of bed...........mind you its starting at 4 in the morning....but who's complaing? We can't believe it really...its just wonderful that he's at this stage. He seems so determined to no longer lie soley on his back. So thats making this mama and papa pretty proud. Its not limited to just the above though. He is also starting to eagerly drink from a glass, do some weight bearing through his feet, and interact with musical cause and effect toys. So just as I was coming to terms with a lack of progression my little man decides to surprise his ma prior to his first birthday. Needless to say this is quite the treat.

We have also started to wean him off his old anti-seizure med as the otherone is up to its max dose. So fingers crossed that is uneventfull. So far so good. Some nights he has a lot of extra movement but that was even prior to reducing his meds. It'll be so nice to be down to two rather than three meds. But whenever I think of complaining about having to give him anything I remember this mom and her 10 month old babe in the x-ray department at Children's. A month prior to that meeting she had been informed her daughter had Cystic Fibrosis and she was having to give her 31 yes THIRTY ONE meds A DAY! So if you ever get on the poor me band wagon ...think of that little darling having to scoof down all those meds EACH DAY.

Cheers Dears! Jules!

Success!

Well I definitely wasn't sure how this past week was going to go. Alistair and I have mainly just toodled off into town and he may have sat in the car seat for a max of 2 hrs at a time. So when I made the big decision that Alistair and I would jump in the car with Grandma and head to Chris and Sarah's wedding off in Calgary I was definitely curious how we were all going to make out. To be honest it really couldn't have been any easier for any of us! We just shoved the front seat right up to the glove box and one of us sat back and hung out with Alistair. Whenever we stopped for a pit stop we just pulled him out of the car seat and let him stretch out and roll around. It was perfect. So ya for us. Its actually really nice for me to know that he is transportable as it increases all the possibilites for us. I'm thinking I need to make a road trip sometime this summer back up to good ol' Ft St John and this just confirms that its dooable. Anyhow the wedding was lovely even though it decided to SNOW! Yeppers we were driving in slushy stuff with summer tires. Ahh yes not what we like to do but at least everyone seemed to be driving appropriately. The wedding was gorgeous and as usual when the Hedges Clan gets together we have a blast and really rip up the dance floor. I brought along Alistair's little tent and just snuck him over to the side and he slept soundly while the music was blarring, people were chatting, and kids were giggling. So yessiery there is a benefit to having a bambino with hearing loss! He did decide to wake about 11pm and hung out with all of us for 3 hrs. Alistair and I even got in a couple of dances!!! We didn't only get in a wedding though. I got to see my buddy Colleen for a short but sweet visit and then I hung out with my long lost sister Candace for a couple of days. She's very prego so we had a good time chinwaggin about all that mama stuff. I also got to wallow in her beautiful home and throw around some ideas for paint colors. We finished off with a nice night with my bro and then headed back home. Just for me to get on the road and see some mountains was incredibly therapeutic. It all must of did me some good as I came home and played my second soccer game ever and got a GOAL! I have to admitt it got me a tad excited last night! .......Well the world is gorgeously green here in PG. Its funny how we have to leave our home to return and appreciate how gorgeous the place really is. ........hey just a note for those of you that reply to my blog can you just put your name down as well as I get these lovely replies and don't have a clue who wrote them! Have a super duper day! : D