Standin Man

Somehow we keep finding room for new adaptive equipment in our home! This was pretty neat though as we tried Alistair in a stander quite some time ago but he really used it to his advantage ie. he'd buckle and hang in it so he didn't have to do any work. However, now with some growth under his belt, foot splints, and some consistent work at home getting him to stand in his routine day it seems to all have paid off.

He actually seemed to enjoy this stander and Lynn, his PT, was wondering if he's getting some proprioception throughout his body that helps calm all the extra movement he tends to have. Anyhow, its neat and gives Alistair a new perspective on life. Now to incorporate it into our daily routine!

Saturday Smile Stimulator

I thought I'd share a small window of the fun we have now that there are two kidlets in our house. Such uncomplicated and unstaged beautiful times.

I get to smile all the time now!

 

Click on the links below

 

Smile Stimulator #1

 

Smile Stimulator #2

 

Have a Stupendous Day!

Motivated By My Boy

If anyone knows me very well I have truly not been a fan of the gym. I've quite disliked it actually. My thinking is if I have the time to go to the gym I'd rather go for a hike, a beautiful walk, or kayak some lake. Well unfortunately all that doesn't really get you STRONG overall. After having Francis I was feeling pretty rubbery. My back always felt like it was going to give out. I was having to brace myself to pick up Alistair. I was huffing and puffing. The body was not in great shape. Yes I just had a baby girl. But I really knew I had to put some substantial focus on my body or I was going to be in trouble in the near future. I say trouble as Alistair requires me to be very physical every day since he doesn't weight bare and if he does he'll give out at anytime so you have to be ready for that. So with a splurge in weight gain (YAY Alistair!!!) from my little man I was very motivated to go get strong. I guess the other key factor was last Nov I crashed pretty good and Mom went and got me a YMCA membership and offered to watch the kids twice a week so I could go. Its so much more motivating when someone else buys you a membership too as there is a nice amount of guilt factor to not let it go to waste. Anyhow now to my utter surprise I have to say I actually love my gym time. At the beginning of March I had reached my preprego weight which was a nice treat to say the least and good for my brain. O and the other key factor to my success at the gym was the Y gives you five sessions with a trainer. The very first session all we did was talk about what has kept me from the gym, what I dislike about it, what I like about it, how to change up my diet, and basically how to formulate a plan so that I will still be coming 6 months from now. It worked! I have a great routine which I love. I still go twice a week for a good 1.5 hours a time and I definitely miss it when I don't make my Tues or Thurs sessions. YAY ME!

I didn't go on any diet plan though as again knowing myself if I go on a diet I get so food focused I just end up gaining weight and ya so doesn't work for me. So what I've done is just used a lot of common sense ie. smaller bowls of cereal, more protein less carbs, more water less caffiene, smaller servings in general, and well basically just a lot of good common sense. Its true for me though if I get happier with the state of my body which was for me getting stronger and toned I find I want to eat better too. Just a positive circle effect.

Anyhow, back to Alistair, the truth is the little man is growing. Its been a reality I've worried about and still do. How do we cope as he grows? How will we physically handle him? How do we prevent repetitive injuries ? I already have tennis elbow starting up in both arms and either tape them or wear elbow braces. What can we buy, make up, or change to make life ergonomically better for everyone? The list goes on... Thankfully he is growing relativly slow and this gives us time to plan, change and learn new methods and acquire new ideas to make life easier on all of us.

 A couple super things is that we now have a wheelchair accessible entrance which I really look forward to this summer as it use to be quite the process to go out. Now I can just whing him into the wheelchair. Zip outside and if he's not into it we just go back in. Plus now I don't have to carry the big hi lo chair in and out of the house with all his stuff just to find out we have to go right back in.

We are also done the wheelchair accessible bathroom too. So instead of holding a slippery 27lb boy we can place him in his mesh shower chair and wheel him into his rain shower. He loves it....and so so much better for all of us.

 I still have to add some color and hardware to the bathroom but for now its perfect!

 

One thing I do know is it feels great to be STRONG!

PS I do know there are no pictures of me when I'm talking all about me but I have none of me! I'll have to work on that.

Lots of Progression

WOW time has flown by! I have been meaning to get on here and do some blogging but life has been so darn busy AND have my kidlets ever been progressing. I wondered if it would make me ache to see Francis progress past Alistair because of course she has already! Frankly, all this amazing progression that she is doing Alistair is loving and benefiting in it in so many ways. It really doesn't hurt. If anything Francis makes his life so much fuller and more stimulating. Its lovely. Perhaps thats also called acceptance?!?

 Meal time still shocks me with how easy it is. Her fine motor control is amazing. The neat part is I just load up her tray and away she munches! Alistair and Francis always eat side by side and he definitely is aware of her presence. Especially when she tries to steal his spoon or wash cloth. He gives her a good tug of war.

 We've continued to work with Alistair and his mobility. Its obvious his mobility isn't what we dreamed it to be even a year ago. However, he still seems to progress at his slow and gentle rate. Jason came up with the idea of sitting him up at the edge of his crib. Its pretty fun. Sometimes he can last minutes and others its pretty short lived. But we take what we can get. Another great point is that he is weight bearing again! Everytime we go to pick him up we are making him use his hands to stablize himself to sitting and then we get him to stand for 10 seconds if possible. All with the hope I can eventually count on him to stand for transfers. The thing about our little man is its consistently a roller coaster ride. But he always seems to come back up and give us some new stuff to be so proud of him for.

Then there is Little Miss Francis and her mobility. This is at the beginning of the month. Yes doing the plank! Have you ever tried this...its HARD.

  Then she got into moving but only backwards so she was consistently under the couch!

From that sitting quickly became an easy process for her.

She makes us smile all the time with the simple pleasure she gets out of life and how easy a grin comes across her face.

Then Francis got too keen on what was above crawling level and quickly pulled to kneeling. This has been fantastic for Alistair as now everything he does has a whole other angle of stimulation. Plus he's basically never alone. Which I'm sure at times he wishes he was!

Now of course she pulls to standing so easily that I've had to quickly move things higher and of course her bed lower! She just seems to be so enthused with her mobility and the curiosity she has to her surroundings is fabulous. Although it does keep me on my toes. I'm always digging something out of her mouth.

The funny thing is I've actually strapped her into Alistair's chair in the evenings where she sits so contently while watching some of "Baby Einstein". Otherwise she's sitting on top of the laptop touching all the buttons.

 As for Alistair he has really taken a step forward in his communication. I know this may not look like communication but its on the path to what we know of it. Basically, he touches the big red button which causes the clown to frantically beat on the drum (and drive me nuts I might add hence the fact you can not see a drum there!). This understanding is HUGE for Alistair. Cause & Effect that is somewhat removed from the hands on vibrating button is another big step for him. (O and don't you love my pile of towels to hold up the clown!?!?! Good critical thinking hey?!? And no I have no idea where my ironing board is....)

 

 This is another great apparatus. The blue box down in the left corner is called a "power link" box. Basically you can plug anything into it. Then you plug in the big red switch and when its depressed it activates whatever is plugged in. Its such a great item as it really is only as limited as his mama is in finding stuff to plug in.  We attached a bunch of crepe paper to the fan and he loves the visual that goes with it. Finding motivating items is the key and presently the fan is his favorite.

 

This week they are going to look at getting Alistair using a computer at preschool. I'm really excited about this. This could be a whole new level of stimulation for him and potentially communication. Its a slow road of progression but the beauty is he is continuing to progress. Francis has definitely been a catalyst in his progression and has decreased the pressure on finding new stimulating things for him to do all the time. Love it!

 CLICK HERE to see Alistair activate the fan with his switch.



17 HOUR MARATHON

In hindsight its pretty incredible what we accomplished as a family in 17 hours the other day....

 

Got everyone up at 5am

Got to airport for 6am

Thru security and on the plane for 7 am

Fly to Vancouver with two backpacks two kids one car seat and a stroller

Got on the train at 920am

Get off at closest station to Children's

Walked 20min to Children's Hospital

10am find the office for Dr Riley( the spinal doc )

Wait in line for xrays

Get asked to go to another area of hospital for xrays

Find the new spot and wait for xrays

Hold little man in place for his cervical xrays

Get back to Dr. Riley's office.

Wait

Get into see Dr Riley as Alistair freaks out...good timing bud!

Walk to our fav restaurant near children's for a yummy bowl of Vietnamese

Walk around the community looking at multimillion dollar homes

Keep Alistair from sleeping so he's zonked for an EEG

Give Alistair gravol to get him drowsy

At 245pm Get the EEG...He sleeps! WHOOP WHOOP

Go and wait to see the Neurologist

Get a new med plan for Mr Man

Walk back to the train

Get to the airport

Go through security

Get on the plane at 8pm

Get home at 10pm

 

What a day! I have to say it went amazingly well. Alistair just had a meltdown waiting for the spinal doc and that was really it for both of them. Francis was so excited on the plane returning home that I had to quieten her done as people were sleeping LOL. But the nice thing over all was that we didn't get any major surprises. Alistair's spine shows no degeneration so now we will just get another MRI in March to check its stability. So no surgery for now. WHEW. Also Alistair's EEG indicates more activity in his brain related to seizures but that doesn't surprise me. We are still trying to get that settled down but in the grand scheme of seizure issues his are relatively mild. Still not nice but thankful and hope full they remain mild. It was also really nice to have Jason with us. To be honest I couldn't do it alone now with both kids. Specifically because Alistair has to have a car seat on the plane as he needs to sit in his own seat now and just doesn't have the stability to do it without the seat. That worked awesome as he was so comfortable and content being in his familiar seat. It was a bit of a gong show getting it in. Jason would go on during preboarding and install it and by the time he was done everyone else was let on. So then we would have to wait till everyone was on and then get on ourselves. But really before we left I told Jason to expect the whole day to be a hurry up and wait scenario and then you never get irked or irritated with the waits etc as you just expected. So as for the plane worst case scenario we delay it a bit! LOL Sorry folks but I'm not too worried about that if thats the biggest issue of my day....and if its yours well damn your doing good in life! :D

 

This is a totally unrelated video of at least 1000 cedar wax wings munching out on our mountain ash berries in our front yard. It was phenomenal to watch. CLICK HERE to check it out.

Mr (Amazing) Mom

Need I say more?



Even though Alistair had another seizure today he had some smiles for Francis

Check out this video CLICK HERE

Contentment

 

Its phenomenal really that its already the middle of January. Time does fly by so quickly. Leading up to New Years there is always the question of resolutions. This year I figured I'd pick something a lot more general rather than specific as perhaps then I can look back and feel successful! HA. So I feel that striving for contentment in life and even understanding what that would look like to me would be a good focus for this year.

First off, having my children healthy and happy and realizing that there are some variables in life that one can not control may be a good start. Its just hard for me when it comes to my little guy. Even though I know he's never going to be on a consistent incline of development it still throws me off when he has bumps along the road. He's had a seizure again last week and a minor one today. Nothing drastic or compromising but still the biggest one yet. You'd think by now I'd have some better coping mechanism in place but nope. I'm good till I know he's in a safe place and then I get thrown off.....and then renormalize again.

 But the funny thing is then he turns around and decides he will weight bare again after months of not doing it. I don't think he'll be walking down the street with me BUT if we could get him to a level where he would temporarily weight bare to transfer that be fabulous. His motivation to stand is when I blow raspberries!

 Another fantastic thing is Francis and Alistair love getting out in the stroller together. Jason got me the ski attachment for this one and with all the snow in town we've been using it for evening walks. So good!

The two kidlets are also taking more and more of an interest in each other which is so neat to see. For the most part Alistair's becoming more gentle with her. Plus she's keen to take his toys away from him and there is no way he's going to have any of that...which is so fun to see. Just another level of interaction for both of them.

Anyhow back to contentment, Francis definitely seems to have that down pat. She's a pretty chillaxed little munchkin with smiles all around. She did just conquer her first flu though and was pretty much attached to my hip for the last couple of days.

 So with all that being said I guess it's pretty obvious that my contentment at this stage in the game is attained when the kidlets are on the right track and at ease.

I would have to say little misses is pretty darn content in this picture!

Chocolate Anyone?