Thursday, November 18, 2010

One Year

My Birthday balloons from Mrs. Kristina! I'm watching my favourite show and taking a tube feed. I have to do that 4 hours everyday but I'm a good sport about it all!

My mom doesn't seem to go out much when this white stuff (I'm told it is called "snow") falls and the temperature is -30c. I don't mind and just watch all the action out of the living room window.

Dear Noah Pieter,

It is hard to believe that a year ago you came into our lives and took over our hearts! You've had to put up with rookie parents (sorry buddy) and a lot of things that make your body feel yucky. Guess what?? You have done all of that with a smile on your face - that's why we call you our resilient boy!

You've had a great adventure over the last year. You have learned that life on earth can be a wonderful place while at the same time filled with difficulty. Nothing has held you back. Not all the tests, the NG tube, surgery, a g-tube, complications, and those awful retches you have each and every day. You blow us a kiss when the retch is done. It makes me wonder if you do that to make mom and dad feel better? It wouldn't surprise me if you did. I think you realize it could be so much worse and thinking of our friends we've met in person and online who struggle so much more than you do (we love you, Connor!!)

You have smiled your way into the hearts of countless people - family, friends, medical and para-medical professionals. Everyone is happy to see you. Even when you have to do less fun things (like 4 hours of day feeds) you are okay with it, especially if Sesame Street is on the laptop! We are so proud of you. You've come a long way from needing to eat 24 hours a day. Wow!

Now we start a new year with you and we are so excited to see what you'll learn to do. We will learn right along with you.

Thank you for being such a wonderful little boy. We love you so much, Noah.

Love and huggies,

Mommy & Dadddy

ps. Thanks to our Ontario family for the little birthday party we had a few weeks back and a big thanks for all the birthday wishes we've been receiving for our little blonde guy. We feel the love, that's foresure.

pps. Please pray for Grandpa D. as he has a big surgery this coming week and needs our prayers for healing, comfort and peace.

Monday, November 15, 2010


This blog is primarily about Noah and his journey with tube feeding. But it is also about life in general and today our hearts are heavy for my brother-in-law, Rob, and my sister, Julie-Ann and their two boys. Rob's dad, known to us all as Nonno, passed away and into the arms of His Heavenly Father this morning.

I, and subsequently Jared and Noah, have been loved and cared for (and fed) by Rob's parents over the last decade. Even amidst their own pain of Nonno's cancer this past year, they have been so kind and generous to Noah. I would ask you pray for the whole family and particularly dear Nonna as she has lost her partner of over 50 years.

I Will Rise (Tomlin)

There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say "It is well"

Jesus has overcome

And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name

No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

And I hear the voice of many angels sing,

"Worthy is the Lamb"
And I hear the cry of every longing heart,
"Worthy is the Lamb"

Friday, November 12, 2010

Wedding fun!


Our thanks for all the wonderful feedback from our last blog. Jared tells me we got 1, 1oo hits last month - that seems crazy to me but shows how many peeps care about Noah! We've felt pretty run down this last week, so it was of real encouragement to us.

First up......Noah of course!

Noah was supposed to have a mickey (skin level button type g-tube) inserted this past Wednesday. We were mighty nervous about the removal of the PEG (his current style of tube) but also excited for the prospect of our monkey having just a flush button on his tummy. When we arrived at clinic, I quickly felt overwhelmed throughout the teaching. Noah still retches often, and does so with vigor. With a mickey, we would have to change his feeding line out for a venting line. By the time we do that, we may have missed the retch and the chance to vent. Not releasing air puts the fundoplication surgery at risk.

We must have looked overwhelmed but at that point the nurse asked how things had been going lately. Now, for the most part I consider us to be realistic about Noah, using respite to ease the strain of his medical needs by getting out and taking breaks, we are doing pretty well in the sleep department and even pregnancy has been manageable. But at that moment, I looked at Jared and tears began to pour out of my eyes. We both said "not great." Now, let me clarify. Noah is GREAT. Noah is developing normally. Noah is slowly gaining weight. Noah is a generally happy and smiling little guy. Noah likes a good joke, usually meaning his parents acting in a ridiculous manner. Noah is making progress on taking faster feeds. BUT Noah is 100% tube dependent. Unable and unwilling to eat or drink much by mouth despite several attempts a day with all kinds of different foods. Noah retches, day and night. He has no diagnosis. All of "this" is what makes us say not great. It is hard. It doesn't seem to change or improve all that much. We know we have it so much better than many but in that particular setting, we both felt weary.

At that point, Dr. Wong arrived and after being briefed by the nurse said he could change the tube but we would probably come back in a week wanting the PEG put back in. Accordingly, we decided then and there to leave the current tube in. Thankfully it isn't showing any sign of wear (cracks, leaking etc.) so it can continue to work for Noah.

And now...the main event...ANIKA AND ANDREW'S WEDDING

Congratulations to Auntie Anika and Uncle Andrew who had a most spectacular wedding! We had a great visit, sharing in family time, watching M and Noah (the cousins) play with each other. M shared all her toys while Noah wouldn't give them back! Haha. It was all so special. Thank you again, Oma, for putting up with us and taking such fine care of Noah. Thanks too for having us at the farm, Grandpa and Grandma.

We wish the newlyweds much happiness and blessings for their life together.

Reading with Grandma in the sunroom at the farm

Noah's with his only Great-Grandma and Great-Grandpa

Mr. and Mrs. Andrew and Anika!

Noah and mommy

M and Noah (one sharing, the other taking the duckie :-)
Jared and his brother Joel (one of his brothers!)