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