The next step...

Actually we are taking 3 big next steps this week. But for now I will blog about this one.

Equipment

Why is it that it is something that I pushed so hard for, have been asking our therapists for since September, and now that the day is almost here I have this funny feeling. A heaviness in my chest. A little part of me wishes that we were not here yet.
Of course the bigger part of me is thumping that little part down with logic and excitement. This will help my baby stand! So that heaviness is overshadowed by excitement that yes, we are taking this step.

So what equipment is causing me all of these feelings? We are getting our AFO's (ankle foot orthodics) and a standing frame.
YAY!

One thing that I was surprised about (and I don't know why) but to make this piece of plastic more personalized - considering it is going to be with us for a long time - we get to pick a design!
So after looking through all of the different designs (they had so many cute butterfly ones - I think Kyle would object) the only one that really stood out for me is the Toronto Maple Leafs - for those International readers, this is our hockey team and we are die-hard fans.

So once our design was picked, the real fun began. Fitting! Nickolas was a champ (of course) but what he really wanted to do was help. Oooh look at this blue stuff, can I touch?!

Pretty much it is the same as when they put on a cast. I guess it is that exact same as when they put on a cast! They are casting his foot and leg so that they know that the braces they are making are for this foot!

First they put on this sock, and then the  blue wrappy stuff (that is the technical name). That sets and then it's just cut off.

The orthodics guy who did the casting I'm sure thought I was weird when I asked if I could take pictures. He didn't say anything, but it is pretty simple.

This is the end result, one casting of a foot.

I guess we really ended up with 2 castings.

The next thing we did was measurements for the standing frame.
It is personalized for him as well, so we needed measurements of his chest, hips, knees and ankles. I am still not that clear on the size of this standing frame. When I've asked I've been shown them followed by "but yours will be smaller". So we'll see what we get.

Nickolas breezed through the appointment with his milk and his cheerios (which we ended up spreading throughout the room).
And in 3 weeks we should have our first pieces of equipment. They didn't come cheap either. Boy was I surprised to see the invoice of $4000! Half for the stander and half for the AFO's. Really happy that government (75%) and insurance (25%) pay for these steps to verticality!
... yes I made up that word.

Treat or Treat!

This halloween was definately fun!

Not only was I sewing like mad for the last 2 weeks - but I actually had Kyle dress up for the family theme! (OK dress up might be stretching it, a plaid shirt - that he said he'd wear again, and an axe - but I'm going with it!)

But it was actually very rewarding to sew up the costumes and plan it all. I had Little Red Riding Hood stuck in my head for months! (Even since Colleen wrote a post about planning for Halloween in August). And I searched and searched and searched for cute riding hood and wolf halloween costumes. But I could not find what I was looking for! But I persevered. With a little help from Martha Stewart I was able to hand-sew exactly what I wanted! (Yes I said hand sew - sewing machines don't like me).

But a very successful halloween costume day - if I do say so myself!

I think Nick enjoyed himself - much better than last year - when he got to dress up as well.

Who doesn't love Calenders?

Thank Goodness It's Friday Lottery Calendar

The Spina Bifida Association of Ontario has kicked off it's annual charity lottery calender. Not only is it a callender that is featuring beautiful artwork from children who have spina bifida and/or hydrocephalus, but it is an opputunity to support the association AND you get a chance to win some cash (only if you live in Ontario). Anyone who is interested who lives in the states or elsewhere is unfortunately not eligable for the lottery portion - but can still enjoy this beautiful callender!

I have not sold these callenders before but am very excited to start. In fact I have already sold 2 batches, and working on my 3rd batch. These things are 'flying off the shelves'. Buying is very easy, you can buy one from me directly, or you can phone, fax or mail an order form. Just mention that you are buying from Amanda Ridding.

"Thank Goodness It's Friday" Lottery Calendar

Support a worthy cause and give a gift that keeps on giving throughout the year!


Not only is the calendar beautifully designed and functional but there is an added bonus - the opportunity to win cash prizes from $100-$1,000.


Buy several as gifts! The calendar is a unique gift for everyone on your holiday list from family members to colleagues and is a fantastic way to promote awareness of spina bifida and hydrocephalus in your community.


Calendars costs just $20. Proceeds support vital SB&H programs and services.

Why BUY a Calendar?

•Proceeds will assist children, youth and adults living with spina bifida and/or hydrocephalus across Ontario.

•This beautifully designed calendar features the unique artwork of 12 children who are living with spina bifida and/or hydrocephalus. Every month is an interesting expression of their talents.

•The calendar is an excellent way to inform friends, family and the community about spina bifida, hydrocephalus and the Association.

•A great gift idea for the holiday season or just to show you’re thinking of someone.


•Everyone has a chance to win in the raffle lottery – in fact you can win more than once since winning tickets are returned for the next draw.

•We are giving away 99 cash prizes throughout the year worth a total of $15,000!


•A win guarantees a minimum cash prize of $100!


•Thank Goodness It’s Friday means that you can win cash every Friday throughout the year.


•Bonus draws on the 1st, 15th and 27th of the month bring added value.

•Win once and the calendar pays for itself!

Buy a Calendar for Your Chance to Win!


When you purchase a “Thank Goodness It's Friday” Lottery Calendar, not only do you support SB&H programs and services …you have a chance to win your share of $15,000 in prize money!


99 cash prizes totalling $15,000 ranging from $100 to $1000 will be awarded:

$200 Thank Goodness It’s Friday (each Friday January to May & July to December) 48 prizes

$200 Thank Goodness It’s Friday June Special (Fridays in June for Awareness Month) 4 prizes

$100 First of the Month Bonus (First day of each month) 12 prizes

$250 Mid-Month Madness (15th of every month) 12 prizes

$100 Payday Advance (27th of every month) 12 prizes

...PLUS 10 fabulous bonus draws:

$200 Valentine’s Day

$300 Family Day

$200 St. Patrick’s Day

$200 Victoria Day

$200 Canada Day

$1,000 SB&H Anniversary

$200 Labour Day

$250 Thanksgiving

$200 Remembrance Day

$500 Holiday Giveaway

$750 Year End Special

Win more than once! Winning tickets are returned to the drum so that you can win again!

How to Order: (Mention Ridding Family when Ordering)
Place your order with SB&H to have your calendar mailed out today.

Order By Phone: Simply call 800-387-1575 or 416-214-1056.

Order by Fax or Mail

1. Download and print an order form
http://www.sbhao.on.ca/about-us/tgif-lottery-calendar Lottery License M659430

2. Fax your completed to 416-214-1446

3. Mail your completed order form to:
SB&H
P.O. Box 103, Suite 1006
555 Richmond Street West
Toronto, ON M5V 3B1

Thanks!

Today is all about Katheryn

I think it's time for a Katheryn post.

When I was pregnant and we first got Nick's diagnosis I was very concerned about how this would impact Katheryn. I was worried about taking away from her, I was worried about things not being fair. I was worried about her losing out and losing her parents to the needs of a younger sibling.
I worried so much for Katheryn.

If I only knew...

 It was love at first sight. He is the first things she thinks of in the morning, and the last thing at night. Her favorite thing to do? Run around and make him laugh, or throw things and make him laugh, or jump up and down and make him laugh... you get the picture.

Katheryn taught Nick to squeal and scream! She is helping him talk. Saying mamamama and dadada.

Katheryn is an itty-bitty thing. She is the older sister by 19 months, but is the same weight as Nickolas - she got checked out as 25lbs 8 oz today - time for celebration - she is officially BACK on the percentile charts! She is full of energy and is a very, very, very picky eater. I think this is part personality and part terrible twos - we are smack dab in the middle of that lovely stage at 2 1/2 years.

(WHAT?! it doesn't magically disappear when she gets to 3 years).

Katheryn is a stubborn, stubborn child. She knows what she wants and will do everything she can to make sure she gets it. She doesn't call Kyle daddy, she calls him wow. Started about 4 months ago, before that he was mom. But she did call him daddy for a while. Her first words. She is only now starting to call him daddy again. She'll start saying daddy, then stop and say wow. Like I said, stubborn child!

She LOVES Dora and Boots (all monkeys are boots) as well as the Backyardigans (Pablo is her favorite - that is the blue penguin), oops sorry we can't forget about Backpack and Map (also from Dora).

Her favorite colour is blue. She loves butterflies and balloons (mylar). She is finally talking in sentences, and I only have to guess what she is saying 10% of the time. She can count to 12, knows up to 5 on her fingers and can identify all the letters in the alphabet. Her favorite letter is 'W'.

She has Sammie, our Bernese Mountain Dog, wrapped around her finger and really likes telling him "oush" and pointing when she wants him out of the room. One of her jobs is to feed Sammie his food at night, as well as help mommy do the laundry.
Katheryn does not wake up well. From a nap, in the morning.. If you wake her up, you pay for it! Except for Nick. If you put Nick in the bed with her in the morning, she turns over, looks at him and smiles. Nick! Even when he's pulling her hair. (One of his favorite things to do).

In the morning she comes in and helps me "help Nick pee". She knows where all his catheter supplies are, and what we need. She only runs off with everything about half the time. She LOVES being chased!

I am sure that I am missing so much of what makes up my little girl.

I think I need to stop my post, Katheryn is climbing into my lap and saying "mommy tee-tell me" (tickle me).

The Power of Positivity and Prayer

We are a community that is ready to take over the world! I really meant to post this yesterday. But somehow life got in the way of my blogging! Funny how that happens.

Today at Noon (EST) another mother has organized (if such a thing can be organized) a Worldwide Day of Prayer. Prayer is very  powerful, but for those people that do not pray or wouldn't participate because of the religious undertones of prayer I am suggesting just taking a moment, a minute or an hour, to think. Think positively, but think about spina bifida and the joys this brings to your life. Think and be thankful for children, mothers (and fathers), family and friends for what they bring into your life.

Please send positive thought to all of those parents who are struggling with an unimaginable decision. That they can find peace and strength. I know that when we decided to continue with the pregnancy I was filled with peace from this decision.

After Nickola was born, I had a number of moments by myself and with family or friends in which we marvelled that THIS was the child we were asked to terminate.

This is Colleen's message to everyone who is joining us in an hour of Worldwide Prayer:

October is Spina Bifida Awareness Month (in the US), and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are be...autiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.


We will begin at noon EST. Pray for as long as you feel led. Pray individually or with another person or group. On your knees, at your desk, while driving your car … the logistics do not matter.

Here are a few things you can pray about specifically:


1. There is one woman in particular who is on our hearts. God knows who she is. She is expecting a child with Spina Bifida, and she is afraid and considering termination. Today (Wednesday) is her appointment with a pediatric neurosurgeon to find out the severity of her baby’s case and to learn more about the diagnosis. Please pray that she will go to this appointment with an open heart and mind, that the doctor will give her a prognosis that is realistic and hopeful (we believe these adjectives are not mutually exclusive when talking about SB), and that most of all, God will give this woman a peace beyond understanding and a clear indication that she should keep her baby or give it up for adoption. There are many mothers willing to adopt this baby.

2. Obstetricians are usually the doctors who first diagnose Spina Bifida based on a prenatal ultrasound. Unfortunately, most know very little about SB except for what to look for on the ultrasound. Many of us were told by our OBs very scary and inaccurate information, such as “Your baby will likely not survive,” “She will be a vegetable,” “Terminating is the most loving thing you can do for this baby.” If this is the first time you’ve really even heard of SB, and a doctor you trust tells you this, you’re probably going to believe it. Please pray that these doctors will be educated about the SB prognosis so that they can give the diagnosis accurately and compassionately.

3. We SB moms will always remember the day we received the diagnosis as one of the most terrifying days of our lives. An initial grief response is denial, which often presents as “Please make this problem go away.” Termination is offered quickly. Please pray for these mothers and fathers, that they will first and foremost trust God to get them through this scary and uncertain time instead of letting fear guide their decisions. That God will draw near to them and make His presence known, as He did for so many of us. That these parents will be so filled with His peace about the future and love for their child that they will consider carrying the baby to term the easiest choice.

4. These precious babies are absolutely innocent and helpless. They are being thrown away because they are not “perfect.” Not one of us is perfect. Please pray for the lives of these babies to be spared. That each movement and kick will remind the mother that God knit that baby in her womb exactly as he or she should be. That their lives will bring glory to our Father.

5. Many of us SB parents cite the support of our family members and friends as the biggest comfort during the time right after receiving the diagnosis. But there are also families and friends who are unsupportive and even encouraging of termination. Please pray for these family members and friends, that God will use them to minister healing to the parents’ breaking hearts. That they will be wholly supportive, not hurtful, and they will lift up and help these parents as their raise their child.


“Again, I tell you that if two of you on earth agree about anything you ask for, it will be done for you by my Father in heaven. For where two or three come together in my name, there am I with them.” Matthew 18:19-20 (NIV)

Please take today to invite others to think about what spina bifida, what disability and what life means to them. Lets take an hour to change the world!