Tuesday, February 26, 2013

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.




Friday, February 1, 2013

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.