Another BIG backtrack





So maybe you wonder why I bother to do the back tracking thing. Well this blog has become like a diary of sorts for me and when I forget or don't have the time to post my pics and notes I feel the need to sneak them in. Sooooo here is another sneek from back in May.

I know I had already back tracked and put a note in about the ABM therapy we received while in Alberta. Well after that the kids and I headed just over an hour south of Edmonton and caught up with a buddy of mine that I made while in nursing school in Red Deer awhile back.

Anyhow, Candace holds a very special place in my heart. Almost like a sister really...I mean what do I know....I may as well call her my long lost sister LOL. Just an incredibly uncomplicated friend that really is such a breath of fresh air to be around. Love her.

So after driving all the way to Edmonton in one day and following it up with five days of therapy which included 2 hours a day of driving we were all ready for some down time. It was fantastic.

 Its hilarious really as we actually didn't leave the property AT ALL for the whole week we were there.

They had a great yard to socialize and get the kids out in and their place was just so cosy we bunkered down and let the kids have a blast socializing away.

Francis tried conquering stairs....

 

 .........reading books in a box.........

 .........and jumping in a bouncy castle...........

 We also spent a good deal of time in the backyard to all the kids delight

.....trying to stay cool....

.....and looking cool......

Meal time was always entertaining.





With all sorts of seating arrangements. 



Francis continually was entertained.

It became obvious quite quickly that

Ellie and Francis would be good buds for the week.

By the time it we packed up and headed home the brain was well rested and the heart was full from all the wholesome friendship talk. Hopefully I get back again next summer!

Grammy & Grampy

We are so lucky that Grammy & Grampy were able to come out for a couple weeks and visit us all. We were able to get in lots of visits and social time. Both my sister in laws family and ours were able to all get out for a camping trip down at the Bowron Lakes. Apart from the first evening of blustery weather we had a gorgeous weekend.

Jason and I have been toying with the idea of buying a newly used camper of some sorts but haven't really decided what we wanted. So while we are still pondering (and will likely continue to for several years) we decided to unload Jason's tool trailer and camp in it. It worked perfectly! Alistair crashed up at the front. We threw a thick foamy in the center and we set up a playpen for Francis at the back. With the little sky light up top and the side door we felt like we were living it up not having to worry about much of anything. It was so successful we will be doing it again here in a couple of weeks!

Fortunately, the next two days were great weather so we were able to sit out and enjoy the sun as well as the campfires at night.

We all went and checked out Barkerville, a historic gold rush town, for half the day as well. Our kidlets at this stage could have cared less to be honest but it brings back great memories of childhood field trips and family excursions.

Mind you Francis was quite delighted with the big stick of sugar she got to suck on that mommy got for her at the store.

In typical fashion we also filled up on a great lunch of Chinese food. I have to say they were so incredibly accommodate re. Alistair and the need for extra space. I have to say I was impressed.

As you can see Francis was just thrilled she had the opportunity to ride on Daddy's shoulders.

Driving in off the main highway 80km into Barkerville, once the largest city north of San Fransico and west of Chicago, it just utterly amazes me the perseverance that individuals must have had to arrive at this place from all over the world with the hopes and dreams of making it rich. Really it wasn't that long ago as it was just back in the 1860's. Its amazing to consider even how much has changed in the last 150 years!

Anyhow, we did bring along a kayak with me hoping I'd get a chance to get a little paddle in. It was short and sweet but just the opportunity to go for 1/2 an hour clears my brain so nicely. I then decided that I should take Francis & Alistair for a tiny tour. Apart from having to support Alistair from side to side I was impressed with how well we did.

I figured I had better put this photo in too just incase some people started to have a conniption because there were no life jackets on Alistair. Ha! We just skirted the shore line for a bit and he was seemed thrilled.

Francis loved being out and about with the ability to explore whatever she could get her finger tips into. I was able to catch her in this bunch of wild flowers investigating the basics of life. Love it!

Just before Grammy and Grampy left we celebrated Alistairs bday a couple days earlier so they could join in the celebration. It was so nice to have a big family gathering.

As usual the time just flies by.

But at least the times we did have together were so memorable and precious.

A BIG FOUR





In some respects its hard to believe that Alistair is four already but honestly in other ways its not. Its been a busy, life changing, and emotionally charged four years. I have never thought WOW isn't it amazing how quick he's changing although everyone would say "isn't it amazing how quick they change" I'd always respond "O ya sure is!" Who wants to hear your little violin anyway. You play it enough and people start disliking the sound of a violin. 

 

I wanted to get away from the birthday party with all the gifts that get stuck in the closet. He has had a bunch there for years. So many people with the best intentions give the worst gifts.

Honestly we struggle to get Alistair gifts on all occasions and because our society is geared to holidays and gifts going hand in hand its another reminder of what he can't do. So Jason and I actually started this last Xmas and that was to stop giving him stuff just for the sake of making ourselves feel better (and worse).



So for this birthday I blatantly said "NO TOYS...if you want to give something bring a helium balloon or a shirt". He loves his balloons by the hour and I love seeing him look smashing and healthy. I guess its the one of a few things that I can do for my little man. Hes still loving his balloons and as for his shirt collection he's acquired some pretty fab looking articles of clothing! I also like having a feast and celebrating for the sake of celebrating. Alistair knew everyone was there even though he doesn't show his enjoyment the same way as the typical four year old I could see his positive spirit for the day.



The thing I'm noticing from year to year is my friends are trying more and more. They are putting themselves in that awkward situation where Alistair pulls his hands away when you go to touch him, he rolls away from them, he his eyes dart into another direction. However, my buddies are learning the patience he needs.

A few (actually many) seconds later he rolls back in their direction, gives them a fleeting glance, and reaches for a short period of time in their direction. This warms my heart that people try. I know its awkward but we love our little man so much and we ache for his isolation and when people put themselves in that situation it just is the greatest gift our family could get that day. The attempt is all that's needed!



To be fair I constantly think of an old friend in first year nursing school who moved away shortly after that year. She had a little fella that had severe cerebral palsy who has sadly since passed away. Plus I've lost contact with her as well. But I always think of the times I came to her home and didn't make that effort and didn't understand the value of the effort.

From that life experience I 've come to realize I can't judge others for feeling awkward or not easily communicating with my son even if its as small as a touch of the hand. But I can educate, provide a patient and understanding environment and over years provide a community surrounding Alistair that will be understanding, supportive and caring.

He gets it people. I know I may sound like a fanatical parent but you get to know how to read the smallest cues of your child. The smacking of the lips indicating pleasure. The pull of the hand from another with a smirk on the face as slight as it may be. The extra roll to get a tad closer to another. Its there but its not the obvious indicators of the typical child. Anyhow, this blog almost has a negative tinge to it it seems but really I'm applauding everyone that is making that attempt to connect with my son and excepting into their lives even if its for a moment. THANK YOU so much as it made for such a special birthday for Alistair.

Anyhow, over the past six months I've been wanting to make Alistair an apparatus to hang his toys off of while he sits in his chair and then he can access them better. So I made the little thingy below. Can you believe that it cost me only $57 to make but if I had bought a similar thingy on off of a special needs sight it would have cost me $257!

I also go down to the Shop at the Art Gallery as girlfriend is the shop coordinator now. Anyhow, she brought in some vibrant water color paintings and since I was drawn in particular to this little turtle I figured it be another neat thing to give to Alistair.

Alistair's actual birthday we went and hung out by the fountain down town and bought this funky little turtle water color.

 Francis loves the water and just had a blast being at the fountain. It didn't take her long to get wet.

 Anyways we had a lovely birthday celebration over several days with food, family, and fun. Cheers Peps!

Vancouver Check up

I should have taken more pictures but I have to say I was a tad busy with just little man and I. In the past we've done the trek together via the airplane to Vancouver. But its been a few years since its just been the two of us on the plane. So things are a tad different now. Instead of huggin him on my lap he's now in his own seat. As you know he can't sit unsupported so that means I had to take a car seat with us. Of course I have the biggest most succumb car seat on the market which is great apart from when you have to carry it through security, carry it down the corridor and onto the plane. It wouldn't be that bad if it was just the car seat I carried. But I also had Alistair in a stroller and a carryon back pack with all the stuff we needed for two days. I didn't want to waste time at the luggage carrousel so I was pretty good at fine tuning the little back pack. Jason and Francis took us to the airport for 6 am. That was the other thing, I had to take a massive gulp and put my big mama pants on as this was the first time leaving Francis behind. It really wasn't that bad but still just got me a little gulpy.

 

Boarding the plane was fabulous, yay WestJet! The concern on how I was going to manage went out the window. They were more then helpful. The one thing I learnt was I need to allow people to help me. I read that somewhere lately from some special needs mom. That is, get use to allowing people to help you while they are little so that you don't end up hurting/damaging yourself before you learn the lesson to accept and ask for help. I have to say I did ask for help more than I'm use to but I still could have said yes to a little bit more. All part of the learning curve. Anyhow, I even had help from the pilot to carry my car seat off! Another thing was I also got to see a couple other teenage special needs kids come on and got a visual of how those non weight baring children managed. Just a nice thing to put in my memory bank and realize its   all  doable with a nice bit of patience. Anyhow, thanks to my buddies Kim & Don I also had no worries when I arrived in Van. They scooped me up, handed me a key to their apartment, fed me, gave me some scrummy wine, and just all and all made the whole trip very uncomplicated and less medical.

 

I could have seen more specialist this trip but I have learnt to prioritize and decrease the hectic nature by limiting who I see. It just can get so much that its ridiculous and the information I would receive from some specialist can wait for another day. So we were there for two days. The first day we just got all the tests done. Alistair was put under general again and got a CT & MRI. The little man did so well with it all. Then I scooped him up and took him for x-rays. After that we went for a relatively long walk to down town Vancouver where my friends live. I happened to get a little lost, which is the reason the walk was a tad long. But I realized I was in the wrong area when I noticed people started to look a tad on the twitchy side. OOPS..and thank goodness for the iPhone I was able to sort out my bearings and get back on track. Anyhow the next day we saw the Ortho doc first, Dr. Alvaraz. She's following how his hips and feet are progressing. This was the first time he had his hips and feet x-rayed. I was relatively pleased with the results. Numerous health professionals were wondering if he had "missing parts" in his feet or the layout was incorrect. Anyhow they are ok. The only issue is because he flexes his feet so much he is creating a high arch in his feet which in the future could cause issues.

 As for his hips everything is presently ok. However, his hip joint comes into his socket at a high angle which could cause issues in the future. SO basically with both of these concerns I need to get him weight baring. Easier said then done. He has decided its not a worth while cause anymore but mama may just help him change his mind. I have a beautiful stander at home and my goal is to start with getting him in it 15 min a day and work up to 2 hours a day. Right now we are barely making 15 min and I do everything I can imagine to keep him happy there: dance, sing, dangle things, roll him around the house....its not so that he will walk in the future. The goal is to assist with his bone density and hopefully prevent osteoporosis from lingering in to early in his life too early.



 

The next doc I saw was Dr. Rilley, the neurologist. This was the second time we caught up with him. This visit was so much better than the last just because Alistair wasn't hollering away making it impossible to communicate with the man. Anyhow I was pretty stressed about this appointment. I didn't realize it like most appointments until after the fact. Once I get the information and feel like bursting into tears I think WOW I was feeling a tad intense about this. Anyhow, the great news is that there is no indication of wear and tear on the spinal cord at the moment. As usual there are some new anomalies

We knew that Alistair had the top two vertebrae displaced but through the CT they were able to look at them in more detail. So I guess the top vertebrae isn't growing like the rest. One can kinda see it in the x-ray above (two pictures up) the spinous process (or tail) of the vertebrae is a lot shorter. But the bigger issue is that the vertebral foramen (hole in vertebrae) is quite small. This could provide an indication for surgery. However, they also did x-rays of his neck in flexion and extension and because the top two appear to be working together surgery is being held off. So this is a great thing. 

So now its just a matter of waiting and monitoring. So in another 9 months we'll be off to Van again. But I guess we'll wait a couple years now before we sedate Alistair again for another MRI. I'm pleased with this as the poor kid has been sedated enough as it is in his little four years of life. I'm thinking this was the fifth time...but don't quote me.

 

We did get some down time while in Van but like I said I just forgot to take pictures and enjoyed the moments. But after we were all done with the specialists we walked to Granville Island and I found a goose poop free spot to lay Alistair out on the grass. As in typical Alistair fashion he refuses to sleep unless he is completely stretched out. My buddy Kim met us down there with her son Grady and we hung out, ate some yummy food, and watched Grady splash about in the water park.

So there you have it. A relatively uneventful trip. We got back home to PG at 9pm to Francis sitting up on Daddy's shoulders greating us with big smiles. Yay for family.

Back Tracking

As you have read life has been a bit .....busy?......hectic?.....So now that I have a moment to back track I'd love to go back and share more on our whole Alberta trip. The first half of our trip we stayed with Uncle George and commuted to Sherwood Park for more ABM Therapy for Alistair with Carla.

Everyone asks how it went. Did we see any benefits? How did he react? You know its always hard to say. Having a kidlet like Alistair the changes are golden but they are minuscule. For instance, the whole road trip to Alberta Alistair had his legs stretched out and on the back of the chair in front of him. But after a set of sessions with Carla he relaxed his legs like the picture below while en route all the way home. In some respects he also seems to be more aware of his body. He sits with me a little taller, he sits up to toys a little longer, and he just seems to use his body a tad more purposefully. Ya its hard to tell. Plus as the mom I want to see things. I want to see change. So am I just seeing what I want to? I don't think so. Both times after the ABM Therapy I've come home and Jason's felt their are changes. Yes he's Dad but when he notices I take note!

Whatever the case I am organizing enough people for Carla to work with here in PG. I've got a total of four which solidifies the deal so I'm delighted! Mainly as I'd like to see how he benefits with no major road trip prior along with the daily two hours of driving. Whatever the case he loves the therapy. He provides a lot of signs of enjoyment during the lessons and he even falls asleep sometimes as he becomes so relaxed.

 Uncle George made it out to a session. Its nice as I get someone else's perspective on the therapy that's looking from the outside in. He seems impressed with the whole philosophy and process. I tell people to be honest as I don't want to dump money in an area if it truly isn't benefiting him.

Francis, thankfully, just gets a kick out of life. She seems to be absorbing everything that is and isn't happening around her. She just loves life which makes it easier with all the travel and change.

Even though we had so much travel time during the day we came back to Uncle George's apartment every day to relax.

It was fantastic. He made us some yummy meals, the view was gorgeous, and the down time was pleasantly uncomplicated. 

We got to just be silly.

 Plus we were able to visit some of George's friends whose son Ben just LOVED Alistair. I wish we had more time with them as the direct physical contact was fantastic for my little man.

 Anyhow, I never use to appreciate what people saw or got from the city of Edmonton.

 However, each time I go I find I enjoy it all the more.
 

 

 

 

Keep Calm & Carry On

Three days prior to Francis's birthday I was out on front patio with Alistair feeding him some lunch and enjoying the sunshine. It was beautiful. Francis was sleeping in her crib and decided it was time to wake up from her nap. So of course I went and grabbed her and brought her back out to sit with her brother and I. She had a few bites of Alistair's lunch when I looked over at him. He was still. Not a movement. I quickly leaned close, looking through his sunglasses to just see his eyeballs were white. He wasn't breathing. I slammed Francis down on the deck and ripped him out of his chair bringing him into the house. He was grey blue now. I grabbed the phone. 911. I gave the location and phone number before Alistair started to take a breath again. Ugg....thank goodness. In moments like this everything rips through your brain. Is this it? Is he going to come back? Will he acquire damage if he does come back? Poor Francis was confused. Of course I'm trying to sound calm for her and smile and talk with her at the same time. Poor thing. Luckily it was relatively short lived in the whole grand scheme of seizures but UGG. No one should see their own kidlet turn grey blue.

We did go to the hospital and get checked out. Blood work was clear as well as the x-rays. Actually it was questionable whether there was a spot of pneumonia in his lungs but "its hard to read pediatric x-rays". I'm probably the only parent that was delighted that he proceeded to have an awful fever of 38-39 degrees for a couple of days afterwards. It just gave a reason for the seizure. I also figure he likely seized with food in his mouth causing him to loose his airway as his seizures truly tend to be quite minor in the realm of seizures.

Anyhow, I did toy with the idea of canceling Francis's First Birthday. The idea gutted me. I am very aware that she has already learned that at times she has to wait as Alistair needs to be put first or needs immediate attention. She's such a patient little lady. So to start off her birthdays with a cancelation would just make me ache. Fortunately, Alistair started to get on the mend the day before her big day and as you can see from the previous blog it was a fabulous day.

As Jason said today we just have to accept that this is part of Alistair's life.

 

 So I guess we may as well....

 

 

 "Keep Calm & Carry On"
 

Check out some cute videos of Alistair & Francis

Smile Maker One