Not a Great Mix!

Yepperoosy its been a month of constipation and teething. My poor little munchkin has not been the happiest camper but hey who would be with those two things nagging at your body all the time. Luckily, we finally got the one sorted out for the most part ie constipation. However, two little chiclets keep threatening to push through his lower gums . So ya, I was just feeling the bliss of him sleeping through the night when WHAM it all got changed about again. One good thing is when we came back from Manitoba we decided to move down stairs and Alistair finally got his own room. Its great! For one, I don't wake at his every movement or random squack as I turn down the monitor so that I only hear him when he really wants his mama. So on the nights that constipation and teething weren't an issue (which are few and far between) I got some amazing sleeps. So bonus for that!I really can't believe we're at the end of August and here I haven't written at all this month. Sometimes one can say ...no news is good news! Basically thats the truth! Alistair has been doing just fine apart from the above complaints. The only problem is is he also became pretty wingy too. He's getting pretty clever actually. Mom comes in the room and the whining begins. Mom leaves the room and the whining stops and out comes the smiles! The part that has been really bugging me though is the fact that I can't do my regular physio with him as the little gaffer literally hyperextends backwards and cries his little heart out! So yes an abrupt stop came to the sitting, the weight baring on his feet, and the kneeling in crawl position. I just find it a real bummer as it was the one thing I could do to help him moving forward and progressing. Its definitely been a 3 steps forward two steps back month. But as usual Lynn at CDC helped take the pressure off my brain. She just helped me realize that I shouldn't beat myself up about this and to focus on what I can work with rather than what I can't. Sounds simple hey! Well it is once someone gives you the ok! Today we got Alistair in a very odd looking appartus that basically straps him into a standing position. He managed 15 minutes for his first go. Not his favorite thing but he was willing to tolerate it somewhat. Anyhow, we do keep seeing little bits of progress here and there. Its just that this month its all in the details! For instance, with his hands he's starting to curl his fingers around the side of his high chair and he keeps himself proped up with hands. He also seems to be following stuff with his eyes a lot better now as well. So since our physio side of things have slowed down I'm trying to put an extra effort into enhancing his hearing and vision and I think I'm seeing some positive changes. Sometimes I just wonder how much is wishful thinking and how much is actually occuring. Anyhow his vision is a far cry from what it was in February. However, he still isn't too keen to focus on the face. Mind you right when I tell people this he turns around and looks at them! You may wonder how one works with the vision. Well basically you just stimutate you kidlet with visually stimulating things that aren't too busy. Plus you always want to present them the same way. So not upside down, sideways etc. So we use a lot of colorful things and as soon as he looses interest we move onto something else. I incorporate the hearing stimulation with the vision a lot too. So using items with bells (he LOVES bells!), or squeeky toys, or toys that make noise when he touches them. Thankfully, the CDC and IDP provide a lot of great toys as a lot on the market is basically out there to entertain the parents then help the kids. Ooo some other good news is on August 9th Alistair had his last dose of phenobarb (one of his anti-seizure meds) and just the fact that I don't have to crush and mix a med everynight is a bit of a treat. It seemed to take forever to get off the med as one has to slowly decrease the dosage over time. I think it was about eight weeks ago that we started decreasing the phenobarb, so ya its been awhile. Now the goal is to see if he can handle being off the Ranitidine, which is his anti-reflux med. The pedicatrician's plan is that he will hopefully "grow out of it" and it seems to be working as he has been on the same dosage for the past 5 month or so. Would it ever be nice if he was just down to one daily med!

Well thats the gist of it! I continue to be busy with the PG Deaf Children's Society. We have our Adventure Camp out at Ness Lake here in a few weeks so thats keeping me a bit busy. Plus an instructor that works at CNC is pretty keen on working with our society to develop a new logo and website for us. So I'm pretty pumped about that. As for the soccer, the summer season is winding down. We have a couple more games to play and then hopefully I get on an indoor soccer team! As you can see we've also checked out a bit of back country and if you can believe it these lakes are all within an hour of moms farm! Kuddos to Jason for loving the back country as I had never seen this part of PG!

So ya life continues to be busy! I thought as the cooler months started to arrive my little daily planner wouldn't look as caotic but that doesn't seem to be the case! But one should just be happy that they have the opportuntiy to enjoy the caos as you know in this last month there has been a couple of people I know who have received some shocking news in regards to their health. So if you've got it....appreciate it and take care of your body as its the only one you get!

Well I had better send this on. I hope it finds you all well and I'll do my darndest to blog sooner than the last one!

TTYS Julie : D

Sun, Sand, & Sanity

O it was lovely....lets just say I was able to read a book under a tree and watch the pelicans fly overhead and sip on a cider while listening to the water lap against the beach. BRAIN BREAK CENTRAL! Ya it was good for all of us. It was a bit of a long haul for Alistair in getting there as it was about a 12 hr door to door trip with the flight and drive combined but once we got there it was so super nice. Jason's Mom and family have a 160 acer island 1/3 of the way up on the East side of Lake Winnipeg. Its gorgeous. The last town is Pine Falls and then you keep driving for another 1 1/2 hours. Gorgeous! Brian's grandfather who was Metis bought the island in 1906 but first he had to give up his native status to do so. He bought it for $10.

Just being on the water was good for the brain

One of Jason's absolute favorite things to do is go pickerel fishing or just fishing in general. So several times we went out to the channel and through in a hook. The funny thing is the very first cast I made was not exactly ideal and I started to real in and VOILA Julie caught a fish! I rarely have the patience to catch the poor things but today was my lucky day as I literally had been fishing 2 minutes! Jason was delighted as we were the only ones into eatting late that evening so we had a good big feed of it.

The weather was absolutley amazing the whole time we were there. Even when we had a 2 hr interval of dark low heavy thunder clouds roll in it was still amazing. Family across the water called to warn us that golf ball sized hail were coming but we only got a few marbles. However, the clouds were so intense we were actually ducking! We even came up with a game plan if a tornado decided to touch down as the sky was that bizzare...no joke!
When we do make it out to Loon Straits (the area where the island is) we generally try to go around the annual golf tournament. Its not your average golf tournament though as the golf balls are baseballs and the clubs are well.....

This was my team. Uncle Lester, Alistair's Auntie Shyan and myself. Lester ended up being one off of the biggest cheaters (aka winners) and I was one off of the most honest players (aka loser). Its always really good times and no we don't play 18 holes but we do play nine!

The local transportation comes in all forms......

(Jason & BJ were moving the couch to the small cabing)

and getting back from the beach

I have to add the next couple of pictures as Brain, Jason's stepdad had this beard for the past 30 years. The only time Anna had seen him without it was when they very first met! He figured the kids needed to see his cheeks! To my surprise the guy didn't have any tan lines on his face....

We tried out several looks before he went and had it all trimmed off. Good times!

It was so obvious how much Nana enjoyed having the little man about. It was great for him to be held by so many other people and just get out of our monotonus routine that we tend to get in while at home.

Nana entertaining Alistair with her musical talents

And Alistair even had his own mini violin to try out although he was not too interested!

Trying on Auntie Shyans sunglasses! : D

We celebrated our FIFTH Anniversary (WOW time flies), and Alistair and Auntie Shyans Bday

and we also all got in a ton of relaxation time......

Dad & Alistair in the gazebo watching the lake.

Auntie Shyan, Angus (the cat) & Alistair mellowing out in the 30 degree weather

Anna and her boys

Well pictures are worth a thousand words....BRAIN BREAK!

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