Children's Wish





 

 Well time has flown by once again at a ridiculous rate. So much has happened since the last time I posted but if I tried to catch up on everything I'd sit here for the next four hours or more and still continue to write. But to keep it short and sweet Alistair had a fifth birthday that we kept to immediately family. I thought I went overboard last year and then I had several little boys disappointed that they weren't invited which was actually very heart warming to me. Then Alistair ended up in the hospital again with a head cold with which he wouldn't consume a drop landing us there for two days again. After that Alistair continued with head colds etc and got me pretty stressed out as he was or has come down to a bag of bones. But thankfully in the last few days we have "our little Alistair back" as Jason said. We`ve also had Grandma Polly and Cousin Hunter for a visit along with my cousin Valerie and her four kidlets. So life has been busy.

 Anyhow during all this stress a friend had referred Alistair to the Children's Wish Foundation. It was a little hard to swallow at first as I've always associated these organizations with terminal kidlets. Well I soon found out that it is a bit different and one of the criteria is that they have a "life threatening illness". Well that`s still hard to swallow but not quite as difficult as the former. So I finally decided to get my butt in gear and phone Katie our wish coordinator.

 Long story short, Alistair was granted a wish! Yes you guessed it he got a travel trailer. We thought about the typical wishes you hear where the kids meet an idle, go on a special specific holiday like Disney Land or Hawaii but we knew he just wouldn't get out of it what he should. So when we heard that they had granted a financial portion of travel trailers we knew this would be something special.

 I have to admit at first it didn't feel quite right. But truthfully, Little Man loves the outdoors, the campfires, the close quarters, and the walks with changing environments.

 Plus it allows us to all have a holiday relatively close to home as a family. We just took it out for a night at Ten Mile Lake an hour South of PG and it was lovely. While Alistair slept. Francis was able to explore the trails, the leaves, and the twigs.

 When Alistair was awake the kids had many moments to chill out together. Whether it was outside on a sleeping bag or indoors sharing a bed and some toys.

 It does so much for us all as we get to be a family on a holiday. Sounds simple but when you have a little fella such as Alistair these moments are unique and special. Especially after a summer such as the one he's had where he seems to be chronically struggling with this that and the other.

 Although he is obviously a high special needs child there is no doubt that he loves the presence of his family and the ability to interact and do things as a unit. We can`t thank Children`s Wish enough for this incredible gift as it impacts each of us uniquely in a long term way. So I`d just like to say if you think you know someone that may possibly benefit from this incredible foundation take the time to go on their website and refer the family. I never thought Alistair would be accepted and perhaps you can have an impact on a family just as my friend Miranda had on us.

 

THANK YOU CHILDREN`S WISH!

Someone bought a trampoline!

Video Time!

• Playing Ball CLICK HERE 
• Hair Cut Giggles CLICK HERE

Not expecting the unexpected.

 Time just seems to keep on moving faster and faster especially when the unexpected happens. Alistair ended up landing himself in the hospital for six nights at the end of May here. I truly didn't see it coming. I believe it started with him having some nasal reflux of food on a Tues. Wednesday he could only handle an hour at daycare and only drank a couple cans of pedisure and by Thursday the kid didn't move. AT ALL. It took me until that evening to realize that I needed to take him into ER. I always have been able to turn him around till this point but not this time. He has never done this before. He would only move to gag and vomit. Ugh I hated it for the poor little guy. He didn't start eatting until Saturday and that was still minimal. Unfortunately I had a sour taste of what its like to be on the otherside (patients side) of the curtain and having to speak up and advocate for proper care when Alistair's situation seemed not be to taken seriously by the ER doc.

  So hard to do especially when that is my work environment but on top of it being totally sleep deprived and watching your kid deteriote before your eyes and not be considered as a credible source for your child. I could really go on but I won't. ......Or perhaps I will just a tid bit! If any health professionals are reading this...please keep in mind that you have NOTHING to consider as a special needs childs "normal". You can't look in a text book and go "o this is the way this kid would be if all his ducks were in a row health wise" So the parent is a huge source of information soley in this regard. Plus us special needs parents live and breath every breath and heart beat of our kids as they don't have a voice to tell us whats up so we have to read all the fine clues that occur throughout the day and compile them to determine what where and how things are happening for our peps as no one else can come along having never seen our child and read these clues the same way. I'd just love it if health care professionals could spend a month or so at Childrens' working alongside the professionals there and see how they include parents as part of the team. There is the odd hic up there too but for the most part the philosophy of care there is incredible. Another thing I wish is all health care staff had the experience of sitting on the other side of the curtain (without their title) and experience how difficult a position it is to be in ....the waiting, the lack of information, watching your loved one struggle as staff take their time to bring or provide interventions, juggling a balance of words to make sure you aren't offending the health care staff to prolong agony and struggling of your loved on....the list goes on and on....

Anyhow...moving on we headed up to Pediatrics and eventually got started on two antibiotics which eventually took affect on Alistair. But he did keep dipping down with his oxygen saturation and his heart rate was beating away more than my liking. But it seems that he got sinusitis. His xray and blookwork came back clear but it was obvious something was impacting him negatively. So it was to my great relief when he started consuming foods and liquids.

Poor Francis had her second birthday while we were in hospital. I had been telling her for the past week we would be having a party in the park for her. Fortunately she was unaware of actual time frames so we kept saying that it was coming. It sure did take a toll on her too though. She's already popping on the potty 99% of the time but she became severely constipated and completely out of sorts with her emotions. I kept thinking about poor families who have to leave their children behind with other family members as the parents head down with the primary child that is sick to Children's Hospital. Its got to be devestating. Anyhow one bonus for her is she got to sleep with her Dad everynight while we were gone. They definitely bonded during that period

 
















It was pretty humbling all the people that came by for a visit to provide well wishes and entertain me as I waited out Alistairs time in the hospital. It was also eye opening how many people reached out to try and lend a hand taking Francis and just trying to make our lives easy just in those short...long six days. One forgets how extensive their support network is until something such as this occurs and then one realizes just how lucky they are.

  
Anyhow, when we finally got discharged I decided to withhold Alistair from school one more week as he had lost a couple of pounds which is huge when you only weighed 28 in the first place! So he had a week of drinking cream, eating a ton of avocados, along with lots of peanut and almond butter. Thankfully he had a good appeitie so therefore I just had to keep shoveling in the food along with the high fat smoothies.

We ended up throwing Francis a Second Birthday party the following weekend which worked out great.We still did the party in the park which seemed to make children and parents alike very happy with it all. Lots of places to run and play. We also did a nice little train ride around the park too which she found so much fun. So not only was her cup full at the end of the day I found mine was too!Grandma did a neat thing for Francis and resurected my old table and chair set when I was a little kid. She sure spiffed it up nice and Francis loves her new set in her bed room. I think there is a tad of resemblance between her and I as little ones!

So this last week has finally been a week of almost normal for us. The books are almost back on track. We are spending lots of time with her cousins as they are sadly moving North on us. We are learing to ride the bike she got for her bday. Socials are back in the swing of things. Plus my brain seems to be screwed on right for the most part. So all a big bonus.Now I'm just trying to get a bunch of summer painting started/ down when the weather is so gorgeous.

Well this girl has got to go to bed. I've been buring the candle on both ends for so long its time to put that down as a priority sooner than later!

A Touch of Water

We decided to sneak in a family holiday with Uncle George and Baba "Grandma" before Jason's spring /summer construction season kicks off and consumes him. So we all boarded the plane and headed down for five nights on Niatross. 

We couldn't have been any luckier with the weather considering just prior to arriving they had some torrential down pours and the day we left it threatened to saturate us as we loaded our bags in

the taxi. The day we arrived we decided to pull away from the dock and head to Snug Cove on Bowen Island. Its a lovely spot: isolated, quaint, nice yachtie facilities, scrummy unique restaurants, green grass etc....

The goal was to give Niatross a good scrub on this trip as she acquired some green hues as all boats do over the winter. She got her scrubbing and looked better for it. I thought we may go to a few different locations but it proved to be the best spot for all concerned.

As a first holiday or any holiday it couldn't have been any more stimulating and positive for little Miss Francis. She was just in her glory. It didn't start off that way however. After we got off the plane we all squeezed in a taxi to head to Niatross. I didn't even think about car sickness. Yes, unfortunately little misses projectile vomited numerous times. The more unfortunate part was we were only less than a km from the boat when it happened. So I was fearful for her that we had an additional 2-3 hour boat ride to follow the very same day. But to my delight and everyone else she was born with sea legs through and through.

She couldn't get enough of being outside. I had felt a tad guilty over the winter months that I hadn't gotten her outside enough and was concerned I was brewing an indoor kidlet. Well those concerns were
totally squashed after this trip.

She was giddy about going outside whether it was raining, 5am, dark, or whatever the case. She loved the dock, docks, boats, birds, stairs and of course sleeping with "Baba" and Pete the Cat. Her vocabulary increased to some two word combos, her understanding and love of boats and water was evident, she found the motion of the boat and challenge to stay upright entertaining and just what the whole boat had to offer was exciting. I think that Niatross presented to her like a personal play house with all its little spaces, low ceilings, close proximity's, and multiple sets of stairs. She was in her glory!

Funny story: when we got back to Vancouver Jason and Uncle George took Francis to the Aquariaum. I guess they took her to the dolphin show and one did the perfect flip and twist right in front of her nose and she didn't bat an eye. However, moments later a seagull flew down in front of her and she was totally attentive! I guess she also had no interest in the fish but THE STAIRS! Wow fabulous! LOL ....Another good lesson for the parents! What we think is the best plan for our kidlets is not necessarily what they will think!

 Unfortunately it wasn't so much the case for Little Mr Man. Each time we go on a holiday I'm hopeful that it'll be a good one for him. He ended up regurging food up into his nose which is an ongoing issue but it seemed more the case on the boat. Then it turned into another sinus infection that seems to be resolving itself. However, the sinus issue created a very poor sleeping schedule for Alistair. In addition, his bowels were out of sync. He fortunately didn't get constipated but his regular ways were not the case and when those bowels of his decide to create an issue they are AN ISSUE. Like I said I was hopeful that this would be the great family trip but the change of schedule and routine just threw him off terribly. So trust me when I say when his routine is messed up ours is too in a big way ESPECIALLY when we are four adults and two kids on a 48 foot yacht. Each night he was up a little earlier and he let everyone he knew that he was up early. The first night it was 4am then it was 3 am then it was 2 am and the last night he was up at midnight! ACK. The problem is he doesn't just hang out and chill he either giggles hysterically and aggressively or he screams bloody murder! Jason slept beside him for most of the nights and I took a turn the last night. Sleepless nights makes challenging days.

On the positive side, the boat couldn't be any better of a holiday for Alistair in many respects. First, the boat has the perfect bed arrangement. He could either sleep in the bow or stern and the hull itself makes the ideal contained space. Secondly, everyone is in close proximately so Alistair was always in the middle of the action. Thirdly, he did enjoy the outdoor aspect in the sense that he got a tone of fresh air and outdoor exposure again with everyone right at his fingertips.

Honestly if the kid had been able to sleep the whole experience would have been different but who in their right mind can function during the day without sleep at night?!?!

We actually had revolved this trip around one of Alistair's appointments. This time we were down for some new splints. They are gorgeous and worth the time in waiting it takes to get them. Serap at Orthodynamic takes such pride in her work and it truly is evident. Plus I love that she puts the personal touch of design into them to keep it individual and not so patient focused. 

Anyhow, back to the trip.....Mom said perhaps this is a good experience for all for a variety of reasons. Or an experience that will help for positive progression of what the family needs and what we need to accept in regards to our little Alistair and the family as a whole. Both Jason and I find it hard to swallow that we shall be going on "family" holidays without our little man. Actually we still are not swallowing that possible reality. It truly kinda hurts to be honest. It made me teary on the holiday that this wasn't a true success bringing him with us. It actually made us long for home and not enjoy the holiday on the water like we really should have/could have. Everyone with experience in this situation can tell us till we are blue in the face that this is the best for all. Trust me I've talked to many seasoned warm loving families of special needs kids and they all advise to access respite in the near or more like it present times. "Its better for your son", "Alistair will have a holiday in his own way within respite", "Your daughter needs this time with you as well", "You will be able to have holidays that you otherwise could not if your son went with you", "You need to do this for you"....and the list goes on. Its funny really as I can spout out all these things to other parents but when it comes to my own family bubble it really is a hard one to swallow. We feel that we should change our expectations in life to fulfill the life that Alistair has been provided. I think we've done a pretty dang smack up job of that on a daily basis but when it comes to holidays it just doesn't cut it. The change of pace and routine which we love just throws him into a complete tizzy.





So I did have a goal last summer of looking for that or those perfect individuals that you would be willing to have watch your child with special needs. Even for short term ie. 3-6 hours so say we could take Francis for a hike or kayak. But then he had that terrible month of seizures and that goal got thrown out the window. So now I've been motivated again to consider this goal. It has to be done. Fortunately, I have a couple leads which I'm so thankful for as that's another factor. Alistair can't speak to keep me informed if things are going about as we would like. Mind you he can provide some strong indicators. Plus we can't higher the sweet little 12 year old down the street that has taken all the right courses. They need to be physically and mentally capable to look after a young fella that is physically very demanding as well as having his medical challenges.


Then of course there is the other side where you want them to make it an enjoyable time when he's out. So all those factors makes the search pretty specific. Anyhow, I'm going to make some moves to go in that direction this month. It may be numerous years before we can go on a several day holiday and leave Alistair in respite with peace of mind. However, if we start now perhaps the reality in the not so distant future will be doable.






So ya that's it. There is always something significant on the list to do with Alistair but like I've said many a times. I stay motivated as I really want this life of mine to be enjoyable for me and the ones close to me as we only get one life to experience (in my opinion). So it may as well be a good one.

Captain BABA

Can life get any better?!?!

 VIDEOS

Wrestling Match  CLICK HERE
Sea Legs             CLICK HERE
In the cockpit      CLICK HERE

Blog Attack

Yes I know you haven't heard from me for a couple months and WHAMO there you have it I'm bloggin for the third time in a day. As I've said before the blog has turned into a family diary of sorts and its nice to just get the thoughts out and pics up of random experiences we've had along the way. 

So what else could I have possibly been up to this year already?! 

Well my buddy Candace and I finally bit the bullet and left our kidlets and hubbies behind and met in Jasper for two nights.

 

 I drove from the West and she headed in from the East. It couldn't have been any better timing for either of us and was so good to rinse  the brain with some laughter, share a few bottles of vino, and enjoy endless chinwaggin with a fabulously uncomplicated friend ( i like those kind). 

 

Actually apart from all that we also rented some cross country skis for only $16 and hit some beautiful trails up behind Jasper. It was tons of fun as we found a trail that allowed us to ski amongst the trees and challenged us enough but not too much to break any limbs for the day! 

 

The trail took us all the way back into down and then we drove back and grabbed the other vehicle. Anyways I've always heard that moms need a random get away but after doing so I can say it was definitely a therapeutic experience for all!

 

The next excursion I was on was with Alistair. We had to head down to Vancouver for three days for our typical slew of appointments that I jam into as short a time frame as possible. As usual its always in the back of my head we may get told something new and not so positive that we have to normailze but I am happy to report that wasn't the case this trip. We got to see two ortho docs, one for his hips legs and feet and the other for his cervical spine concerns. 

 

They both were happy with how things were aligning and so far no surgery in sight. WHEW!

 We also saw an allergist who we won't need to see again and Alistair got his feet casted to get an impression for new splints. No and don't worry they were just a five minute casting not a five month set! The only thing I wasn't expecting was three more separate appointments/trips to vancouver in the next year! Eek Its all based on how often the specialists want to follow up and this time none of them could align with the other. O well.....we are getting pretty good at this gig and the airlines are pretty darn helpful. However, the biggest part that helps demedicalize our trips and make it actually kind of fun is that my friends continue to take us in to their place and spoil us rotten. I'm sure I've said it before that they live right down town which makes it all the more fun. 

 While we were waiting for them to return I decided I needed a brew by the seaside. We found this fantastic spot overlooking English Bay while in "Milestones" restaurant. I splurged and had a pricey seafood salad and two brews. The staff were super friendly and chatted away with me off and on. As i was finishing up the last brew the manager came along picked the bill up off the table and scrunched it up in her hands. "Today I think you don't need to pay this.....I feel like paying it forward" she smiled. What a treat!

 Anyhow, like I said its always a treat heading down and being treated so royally by my friends Don & Kim. They always go above and beyond and make our stay so lovely.

 Alistair got a bed time story each night...which their son Grady enjoyed immensely in Alistair's "hot tub". Grandma Hedges bought this for Alistair awhile ago and its been so handy. It deflates into a small backpack and it contains him so nicely so everyone can have a good sleep. Walmart in the USA have them pretty cheap but to get it here we ordered it through Amazon. Here's a link for more info KIDZ BED

 Don also got Alistair playing hockey the first night. They defended goal as Grady shot soft puks by them into their mini nets. All this extra and unique interaction for Alistair is truly the icing on the cake. You can see the joy in his eyes for the inclusion and interaction. Happy kidlet makes happy mama!!

  

Well spring has truly sprung here in the North. Water is flowing in all directions and the heavy winter jackets are finding a hook down in the basement.

  

I can see a spring and summer full of learning, exploration and loads of smiles.

Hope its kicking off the right way for all.

Cheers Julie

Some Videos To Enjoy

Uncle Havin Fun CLICK HERE
Francis Making Chili CLICK HERE
Georgia & Francis Running in Circles CLICK HERE