Friday, January 24, 2014

Life is flying by!

WOW what a year already! Life is just flying by. To be honest January and February tend to be the slowest months for me and I surely can't say that now. With working almost fulltime hours lately, having Alistair back in daycare Mon-Fri, working part time on Jason's book keeping, organizing more sessions of ABM therapy for five days out of the house at the end of the month, flying to Vancouver with the family tomorrow for a few days for the variety telethon, as well as the play dates, socials, and appointments throughout the month lets just say I hardly have a second to sit and read those magazine subscriptions that get plunked down in the mailbox.

This picture has a pretty neat story actually. The production manager that came up with the crew from Global to do a video for the Variety Show of Hearts Telethon took this picture. I didnt' know anything about it until a co-worker of the production manager sent me this photo below. He had added the text and had it up in his office! It just warmed my heart and I asked for the original. It amazes me how my little man has and will continue to touch so many hearts in such a positive way.
Alistair has been doing more then great lately. He's so happy being back in school full time. They are just great at keeping him stimulated with getting outdoors, doing gym time, playing with the other kids, and pushing his limits. Talk about limits he's maxed out all the communication goals we had set for him so we are now at another level with exciting for all that he's making progress. Alistair's also been in the lime light lately. We had Global TV come up some time ago and do a little video clip on the family for the Variety Telethon which airs on the 25th & 26th of January. The neat thing is our family was chosen this year as a feature family for the telethon so Variety is flying us down and putting the whole family up in the hotel for a couple nights. We don't get many opportunities as a family to get away and to top it off as a charity event and to be totally catered to is pretty special. We are going with the flow and going to experience what its like to have the airline fly Alistair's stroller down with us, use this new FAA approved child safety harness, and to experience the whole variety telethon experience. It will be quite the couple of days! I understand we are going to be live as a family on the Variety Show of Hearts Telethon Jan 26 between 11 & 12. Whatever the case hopefully the whole telethon is successful with the fundraising as they touch a lot of lives and hearts and truly take substantial financial and emotional strain off families like ourselves.
(Francis trying out the CARES FAA approved Safety Harness for Alistair. is where you can buy one if your interested. It cost me about $100 after customs was involved)
Alistair is definitely getting a lot of publicity lately. He also got our whole famdamily on the front page of the paper. If I had known they were going to cite me word for word I may have attempted to sound a tad more.......ummmmmmm ya whatever! LOL

Here is what the article reads : "
More than four years after their son Alistair was born, Julie and Jason MacMillan still don't know what is causing his disability - and they're fine with that.
Although Alistair can't talk, walk or sit on his own, doctors have been unable to determine the source of the problem and after years of tests the family has come to accept that the condition will, at least for now, remain a mystery."He's an undiagnosed kid with a whole shwackload of anomalies and we just accept it. It is what it is," Julie said. "Maybe one day we'll pursue it more but the geneticist we did follow for the first few years doesn't have a clue [what Alistair's condition is]. They've put him in a database with all those anomalies and they just don't know why he is what he is."Born with a rare congenital malformation - Alistair's stomach and intestines were in his left chest and pushed his heart to the right side of his body - doctors had told the family if Alistair made it through the early days of life he would likely make a full recovery. He spent his first six weeks in a neo-natal intensive care unit in Vancouver and then was transferred to UHNBC where he received three more weeks of care before being discharged.When Alistair was an infant, Julie said she noticed he was "floppy" but she attributed that to his early medical challenges and figured at some point he would progress through it. Soon after his release from hospital, he started having seizures, but those were soon controlled with medication.But as the months and years went along and Alistair remained unable to sit on his own or communicate verbally, Julie and Jason realized there was more to their son's condition."It really wasn't until he was about three or even three and a half that we started saying we had a special-needs child," Julie said. "No specialist ever came out and said we did, we just started piecing things together - he's floppy, he couldn't sit, he couldn't stand, he was having trouble holding his head up."Alistair is classified as having global developmental delay, a catchall term that's used when physicians can't pinpoint the cause of the problem. But the lack of a firm diagnosis means the family has no idea what to expect as Alistair gets older."There's no prognosis with Alistair, he's in a class by himself," Jason said.After years of having Alistair undergo many tests to try to determine the underlying issue, the family eventually decided that all the visits to specialists in Vancouver was causing too much stress on everyone involved. Since they were no closer to figuring out the cause, they decided to take a step back and just work with Alistair at his current level. Other than his seizure condition, which is under control, there are no other major health issues Alistair faces on a daily basis."I think the hardest part for my husband and I was coming to terms and realizing he was a special needs kid," Julie said. "At the beginning you think, 'of course he's delayed' and you want to push and push and if we just put a huge amount of energy into the first three years we'll get him past this."Although there are still many things Alistair can't do, Julie and Jason are encouraged by what he has accomplished as he continues to make progress. He communicates by making noises and by pointing to objects or flash cards with pictures of items like food, drink or wash clothes on them.They believe he's been able to understand things more and more as he gets older.Recently while Julie was reading to Alistair and his little sister Francis, he started turning the pages of the book on his own."That's really exciting, but a normal kid's parents may not even recognize that as a milestone. For us it's a massive feat," Julie said.Like many other families with special needs children, the MacMillans only found out about Variety - The Children's Charity after they had Alistair. Recently they secured funding from the charitable group to help outfit their accessible vehicle with a lift to help get Alistair's special chair in and out of their car. Since Alistair attends the Child Development Centre daily during the week, the accessible car and lift have made things much easier on the family."It prevents me from having a bad back," Julie said, noting many parents of special needs children suffer injuries due to all the lifting that's required. "Our big thing is to try to stay fit and not be in a really bad state that way."Variety is holding its telethon this weekend on Global, beginning at 7 p.m. on Saturday and running for more than 22 hours. The annual event helps raise funds to help special needs children and their families get the equipment they need and ease financial strains.Among the entertainment that will be featured during this year's broadcast is Elton John, Mumford & Sons and tributes to Barbara Streisand and Bruce Springsteen.Jason said he and his wife never understood the magnitude of what a group like Variety can do to help until they had Alistair and began living the life of being a special needs parent."It can be straining financially and [Variety] just makes it that much easier," Jason said.More information about the telethon is available online at"

Francis as always is just a sparkle in our lives. I don't think life could be any more exciting for a little person than what she gets out of it. Its so fun. Christmas was amazing. She just took the whole day in stride and loved every minute of it. Paper, boxes, presents, food the works. The other day I got out with a friend and her kids cross country skiing at our local ski way. She loved it so much she fell right asleep. Its nice to get her out for some fresh air.We also took Elmo sking to keep her company in the chariot stroller. Elmo joined our family at Christmas time when Nanna, Jason's Mom, sent him over. Francis just loves the fury red guy. I should also mention Nanna just headed on a jet plane to Egypt to teach at an international school. Word is she's going to start up a blog so when she does I will link it to mine. We are pretty excited for Nanna on her new adventure.  Anyhooo back to Elmo Francis absolutely adores the guy and between dancing, skiing and getting his teeth brushed Elmo is one busy lad.

As I said going back to work has added to the month flying by. I think its been a really good thing for me. I'm definitely in a whole different headspace then when I left the ER department. Interesting really to leave feeling its everyone else with the issues and then coming back to realize perhaps it was oneself that had a bit too much going on at the time. Anyhow, although its complete chaos at work due to lack of beds to move admitted patients out of the ER department and a list of other things, I'm really enjoying getting some different exposure in my weekly routine. I also decided not to take a permanent position which gives me a positive edge as I know I have a light at the end of the tunnel of craziness! Once spring hits Jason will be going strong with the work world and I"ll relax back into mom mode.

Well I just wanted to touch base before we head south for the Variety Telethon Experience. Enjoy the videos!
This one is a real heart string puller! Its the one Global put together for the Variety Telethon.

This is also a super cute video of Francis & Alistair and their unique connection they have.

OOoooo and here is another gooder with Alistair in his switch car and Francis leading the way!

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