good news/bad news?

In November 2012, Caelan underwent an assessment by a representative from W. Ross McDonald School.

We received their report in the mail this week.

It is the opinion of the assessors that:

Caelan is presently NOT functioning as an individual with Deafblindness.

Overall this is definitely good news, there really is no question about it.  However, it means that Caelan isn't eligible to benefit from the excellent resources and support that the school provides to Deafblind students. As a parent, that's a little disappointing... in a good way.

Rough week

I keep thinking I should post but have nothing that I really want to share...

It's been a long week of frustration...

• Last Wednesday we had the joy of doing this yet again and frankly once in a lifetime was more than enough for me!  It now has me completely paranoid and cranky too!  I've been checking everyone every other day, if not every day since then. On a positive note our house is super clean now.
• Thursday our school nurse's car wouldn't start in the freezing temperatures we were experiencing... I stayed home with Caelan only to discover that I couldn't get our car started either!  The car is only a few years old and we hadn't had any trouble with it before then.  Thankfully after plugging it in it started without hesitation.
• Damian worked both Saturday and Sunday as part of a new work schedule whereby he'll be working about one weekend a month.  Not usually a big deal, in fact could work in our favour for weeks when Caelan has multiple doctors appointments.  However at this point, I'm not interested in being a single mom of almost four kids - ever!
• Yesterday brought 10-15cm of snow and meant a very long drive home.  It also meant I had to cancel dinner plans with girlfriends that I was really looking forward to.
• Today the buses were cancelled for the threat of freezing rain that has yet to appear in our area.  When the buses are cancelled either Damian or I need to stay home with the kids. 
• Tomorrow is a scheduled PA Day and one of us will need to stay home again.  At the same time I'm wondering whether the freezing rain that was forecast for today will hit tonight and make tomorrow's drive to work treacherous...  Hopefully those mild temperatures they're talking about will make this talk of freezing rain a non issue.

Just wondering what else is yet to come...

Bump update II

Just wanted to let everyone know that I had my 32 week ultrasound earlier this week and everything looks good.  Confirmed that there looks to be a healthy heart, two kidneys and a stomach!  The tech probably thought I was crazy for focusing on things that I can't imagine many other expecting Mom's look for.  Thankfully, after I explained the situation she was more than happy to clearly point out all my areas of concern.  Baby is estimated at weighing over four pounds and heart rate was 132.  All in all, it was a very quick appointment.

The follow up with my obstetrician the next day went just as quickly.  No weight gain for me in the past two weeks - don't know how that's possible, but I'll take it!  My blood pressure was good.  No concerns, no questions and next appointment is in two weeks.

Yrcadtopia

Spoken by Darcy, to the best of my memory: 

Today, at school, in reading class, no maybe writing, well I don't know what class it was but we were talking about all these different countries that nobody had ever heard of and learning some things about them. 

Then we had to make up our own country, an island just discovered.  We had to name it and explain some things about it.

I named my country "Yrcadtopia"  where everyone loved me and people came from far away lands just to have a snip of my hair.  We didn't give tourists my real hair though we made fake stuff to give them.

Yrcadtopia was an island the same size as three Canadas.  I won for biggest country.

Cold enough?

You know it's cold when...

 

Our thermometer this morning at 8 o'clock read a lovely -31 degrees.

 

With the windchill it was -40...

Curling

look at the concentration...

 

Not the greatest photos but I've been meaning to get some curling pictures up for ages!!

was this in the forecast?

Apparently we didn't listen to the weather forecast this weekend... Or maybe it wasn't forecast at all, I'm really not sure.  All I know is that we had plans to go into town and run errands after the girls curling, but when the roads looked like this...

Well, we just headed right back home and stayed cozy for the rest of the day.

Freezing Friday

Crazy chickens.

Damian built a coop for our four chickens.  It's raised off the ground and there's lots of hay for the chickens to roost in to keep warm on these cold winter days and nights.

This morning when Damian went outside to check on the chickens it was just just after six in the morning.  The temperature on our thermometer was -29, before the windchill.  It was freezing cold!

What does he find??  All the chickens were outside roosting?!?!

CRAZY chickens!!

Wordless Wednesday: Guess what this means!

Special visitor at work

It was very quick...

 

 

but I'm sure glad they stopped in...

 

 

made my day!

Walkers

Today, Damian and I met Caelan's physiotherapist at the school to test out some new walkers for Caelan.

He's still using the same walker he originally started with and it's really too small for him.  In fact, it's so small that it's more of a hazard because he could very easily topple over the front of it if he were to lean forward too much.  We've been using it backwards to prevent this from happening.

Unfortunately, there wasn't much to test since only one of the walkers was appropriate for his size.

It's a Rifton Pacer.  Basically a newer model of the walker he's currently using.  We had hoped that it would also be slightly smaller, or more specifically more narrow, but that wasn't the case.  It's actually wider!  It makes sense that the taller the walker the more width you need to balance it out.  Still a disappointment though, especially because he could barely turn around in our hall in the old walker.  There's no way he'll be able to in this new version, although it looks like our only option.

The plan is that the school board will purchase the walker for him to use at school.  At this point we just don't see the value in purchasing him one for at home.  We are hopeful that the school board will allow us to bring it home for use in the summer months instead of leaving it there gathering dust.  At least then he'd be able to use it outside during the summer.

Even though the board is purchasing the walker it still is "Caelan's" to use for as long as he remains in this school board. If we were to move but remain in the same school board the walker would go with him. However, if we were to change school boards the walker wouldn't be able to go with him.

It comes in an assortment of colours and Caelan got to pick which one he'd like.  In case you were wondering, he picked the fire engine red, then immediately wanted to know where it was!

It's ordered. 

Should only take between 4 and 6 months to arrive... ugh! 

Milder temperatures

It's been so mild lately.

We've even had rain the past few days.

Unfortunately, with a metal roof that makes things treacherous as the snow that's accumulated all comes sliding down...

This is what we woke up to at the back door today. 

We could actually watch it sliding off the roof.

 



Every year the same thing... and it still impresses me.

Wordless Wednesday

Bump Update

Thirty weeks today.

In the third trimester.

Less than three months left to go.

At times I feel this pregnancy flew by, and at others it seemed to drag on without going anywhere!

So far, everything has gone... smoothly. 

We've had all the regular tests and ultrasounds and there are no concerns.  The anatomy ultrasound was done at the hospital in the Obstetrics Department.  There was extra special attention paid to the heart and kidneys since those were key pieces in Caelan's CHARGE diagnosis.  Everything looks good.  I have a regular appointment tomorrow at which time we'll schedule another ultrasound for around 32 weeks just to confirm again that everything is developing as it should be.

Some people have asked if I'm worried that we'll have another baby with CHARGE.  I'd be lying if I said I hadn't thought about it, but I don't think I'm worrying over it.  After Caelan was born, both Damian and I went through genetic testing to determine if we had any of the same "unique" genes as Caelan and we didn't.  It was explained to us that Caelan pretty much did this all on his own.  Kind of a fluke.  I try to keep that in mind.

I met with Caelan's Geneticist early on in this pregnancy as we had agreed we would years ago when Caelan was first diagnosed.  It was explained that although Caelan did do this on his own it still increased our odds in it happening again to 1%, compared to 1 in 10,000.  I'll admit I wasn't happy to hear that.  At that time we were also offered further testing via amniocentesis to determine for sure whether this baby had the CHARGE gene.  We declined.  It's our understanding that the majority of CHARGE cases are still clinically diagnosed, and that not all children carry the gene.

I definitely feel older this pregnancy especially as I enter the most uncomfortable stage.  I feel like I'm up most of the night trying to get comfortable or going to the bathroom.  Oh, and the leg cramps... charlie horses that have me jumping out of bed like a mad woman and this time around I've also had cramps in my feet and toes?!?  My hips, my groin, my back all ache most days... lots of complaints!

I'm happy to say that I've decided to start my maternity leave two weeks before my due date, which will probably jinx this baby into coming two weeks later, just to teach me a lesson.  I just figure that both Darcy and Caelan were around two weeks early so this one should be too!  Before that I'm going to use up my remaining vacation days.  That brings my last day of work to around Feb 8th, depending on how many surprise snow days we have between now and then.  To say that I'm looking forward to it is probably a bit of an understatement!

First monthly menu of 2013

Here it is for January... better late than never! Although I'm sure there will be lots of changes since I put it together faster than I would have liked... Something to work from though.

1. Toad in the hole, mashed potatoes, carrots, peas and corn
2. Pasta point of no return (Looneyspoons Collection, pg. 135), basically pasta primavera
3. Chicken with lemon and olives served with couscous and a salad
4. Tacos
5. Lasagna, Caesar salad and garlic bread
6. Stuffed pork tenderloin wrapped in bacon with roasted potatoes and veggies
7. Baked potato soup
8. Turkey enchiladas
9. Cabbage rolls with mashed potatoes and veggies
10. Fettuccine Alfredo
11. Uncle Pat's Birthday Party (40!!!)
12. Slow cooker cranberry chicken with rice and veggies
13. Beef stroganoff
14. Thai coconut soup
15. Pork tenderloin "ribs" (Looneyspoons Collection, pg. 224) with fries and salad
16. Beef noodle casserole
17. Thai chicken wraps with spicy peanut sauce
18. Burgers
19. Shepherds pie
20. Roast beef with Yorkshire and all the trimmings - a la Jamie Oliver!
21. Caramelized onion, carrot and parsnip soup with beet splash
22. Kung Pao Chicken and rice
23. Greek meatloaf with olives and feta, roasted potatoes and salad
24. Turkey tetrazini and salad
25. Homemade donair dinner
26. Risotto
27. Pork chops in a dijon cream sauce with veggies
28. Mexican lasagna
29. Breakfast for dinner
30. Fajitas
31. Homemade pizza

Baking with Caelan

On New Year's Eve Caelan and I made these cool melting snowman cookies...

 

 

 

... inspired by pinterest yet again!

extra holes

Someone was pretty excited today to go and use the gift certificate that she got for Christmas to have her ears pierced!  That little bling bling made her pretty happy!

Worth reading... and remembering

Regina Brett's 45 life lessons and 5 to grow on

Published: Thursday, September 20, 2007, 2:03 PM Updated: Wednesday, October 28, 2009, 9:49 AM

By: Regina Brett

Originally published in The Plain Dealer on Sunday, May 28, 2006

To celebrate growing older, I once wrote the 45 lessons life taught me.

It is the most-requested column I've ever written. My odometer rolls over to 50 this week, so here's an update:

1. Life isn't fair, but it's still good.

2. When in doubt, just take the next small step.

3. Life is too short to waste time hating anyone.

4. Don't take yourself so seriously. No one else does.

5. Pay off your credit cards every month.

6. You don't have to win every argument. Agree to disagree.

7. Cry with someone. It's more healing than crying alone.

8. It's OK to get angry with God. He can take it.

9. Save for retirement starting with your first paycheck.

10. When it comes to chocolate, resistance is futile.

11. Make peace with your past so it won't screw up the present.

12. It's OK to let your children see you cry.

13. Don't compare your life to others'. You have no idea what their journey is all about.

14. If a relationship has to be a secret, you shouldn't be in it.

15. Everything can change in the blink of an eye. But don't worry; God never blinks.

16. Life is too short for long pity parties. Get busy living, or get busy dying.

17. You can get through anything if you stay put in today.

18. A writer writes. If you want to be a writer, write.

19. It's never too late to have a happy childhood. But the second one is up to you and no one else.

20. When it comes to going after what you love in life, don't take no for an answer.

21. Burn the candles, use the nice sheets, wear the fancy lingerie. Don't save it for a special occasion. Today is special.

22. Overprepare, then go with the flow.

23. Be eccentric now. Don't wait for old age to wear purple.

24. The most important sex organ is the brain.

25. No one is in charge of your happiness except you.

26. Frame every so-called disaster with these words: "In five years, will this matter?"

27. Always choose life.

28. Forgive everyone everything.

29. What other people think of you is none of your business.

30. Time heals almost everything. Give time time.

31. However good or bad a situation is, it will change.

32. Your job won't take care of you when you are sick. Your friends will. Stay in touch.

33. Believe in miracles.

34. God loves you because of who God is, not because of anything you did or didn't do.

35. Whatever doesn't kill you really does make you stronger.

36. Growing old beats the alternative - dying young.

37. Your children get only one childhood. Make it memorable.

38. Read the Psalms. They cover every human emotion.

39. Get outside every day. Miracles are waiting everywhere.

40. If we all threw our problems in a pile and saw everyone else's, we'd grab ours back.

41. Don't audit life. Show up and make the most of it now.

42. Get rid of anything that isn't useful, beautiful or joyful.

43. All that truly matters in the end is that you loved.

44. Envy is a waste of time. You already have all you need.

45. The best is yet to come.

46. No matter how you feel, get up, dress up and show up.

47. Take a deep breath. It calms the mind.

48. If you don't ask, you don't get.

49. Yield.

50. Life isn't tied with a bow, but it's still a gift.