Reflections

To my Grandmother, dearly loved, forever remembered. 

I can tell you many things about my Grandmother. Like how she loved the Toronto Maple Leafs. That she read the paper everyday. How she used to torture us daily by listening to the local radio talk shows, and later Ralph Benmergui on CBC. I don't think I ever saw her without a book by her side. She made wonderful apple pies and I'm sure Grandpa will agree, but he will tell you she didn't make enough of them. And she loved a debate. And I mean ANY debate. It didn't matter if she was participating in it or watching it- it was a favourite pastime. She had very strong opinions. And I can't fault her for that! She was intelligent, and dignified, loving and generous. She loved good food, and though she complained that my mother couldn't cook anything that she could eat, she happily ate anything I sent her way.

Politics. Well. Let's put it this way. Before taking Jon to meet her the first time I remember saying ”Whatever you do- DON'T talk about politics....” And boy did she ever fish for a political debate that day! I hope I didn't spoil her fun:)!

She appreciated simple things. She loved going out for drives, particularly along the water front. In the spring it was to see the gardens. In the fall it was to see the colour, and of course the Christmas lights in winter. She loved my children, without reservation or explanation. Even when they ran around her house like little monkeys. She never let a visit end without telling us how much she enjoyed the time we spent with her. She thought I was nuts when I said that our youngest would be born at home with a midwife, but supported the decision nonetheless. She cut articles out of the paper on breastfeeding and made sure that I knew how important it was. When we faced medical problems with Owen she was far more understanding than most. Professionals urged us to seek a diagnosis, and told us that things were terribly wrong, but she simply stated “If he won't eat that, then feed him what he will eat.” and “He will talk when he is ready, and not a moment before.” Yes Nana, you were right. She loved him in all of his quirkiness and regardless of what the Doctors said. She was not afraid. If I can be half as wise and understanding as she was I will do well in life.

Nana loved animals, and has been a long time supporter of the Humane Society. I think she was quite pleased that I spent so long working with animals. Perhaps it proved that I had been listening to her all those years! She loved to garden. And watch things grow and change.

There were only a few things that she ever told me she disliked. Cruelty of course. Violence of any nature. Teasing and torture. The squirrels that kept tearing up her lawn and garden! Having red hair as a child. I think the red hair part may have softened a bit with time, because when she noticed Owen's hair had a red tinge she seemed rather proud!

I have been blessed to have had my grandparents in my life for so long. I have many happy memories of my grandmother, and I hold them close to my heart. There was a time that I may not have been willing to say this but I am quite a bit like her. I am opinionated, and stubborn as the day is long. I appreciate simple things, like listening to my children giggle. I planted a garden this year to help teach the little ones what she taught us not so long ago. I wait with eager anticipation for the holiday season each year just so that I can watch “White Christmas” and “ The Sound of Music”. I make my children sit through them too. It just isn't Christmas for me if there isn't trifle on the table. I mute the commercials on the television and complain relentlessly about how much I hate them. I put “Riverdance” in the DVD player just to watch Owen and Daisy dance. We love her dearly, and she will be sadly missed, but fondly remembered. And just for you Nana......I will smile every time I yell at those rotten squirrels for stealing my tomatoes and digging in my garden! 

Lillian McCoy 1917-2008

MOMables

Good Morning Everybody!

Exciting news!  A couple of weeks ago I was contacted by Laura  on Twitter.  She saw my blog post on Mutant Popsicles and asked if I would be willing to share the recipe with her readers at MOMables!   Oh yes I am willing to share!  The more, the merrier!  I checked out both of her websites and loved them so much I have decided to try to send her recipes regularly!  If you have interest in healthy cooking and want some awesome lunch ideas for your picky kiddos be sure to check it out!

Butternut Squash Vanilla Cupcakes

The batter for this cupcake whips up into a wonderful velvet-like texture that is a dream to work with. No more boxed mixes for cupcakes in this house!  These are delightful filled with lemon curd.  Mini versions make a nice addition to Holiday Treat trays.  To increase the fat and protein content I normally substitute 1/2 cup of finely ground nuts for 1/2 cup of flour.  Be mindful if you are adding nuts and putting them on treat trays- nut allergies can be fatal!

Yummy!

Ingredients:

Flour – 2 cups
Baking Powder – 2 tsp
Salt – ½ tsp
Butter – ½ cup
Sugar 1 ¼ cup
Eggs – 2
Butternut Squash Baby Food – 1 cup
Vanilla Essence – 1 tsp

Method:

* Preheat the oven to 190deg C.
* Grease well or line 2 mini-muffin trays.
* Sift together flour + baking powder + salt 3 times. Keep aside.
* Cream the butter and sugar well on high speed until light and fluffy.
* Beat in vanilla essence, followed by eggs beaten in 1 by 1.
* Now beat in flour and squash alternatively till well incorporated.
* Put about a tsp full in each mini muffin casing, about ¾ full, as it will rise.
* You can add sprinkles on top if you like.
* Bake at 190deg C for 10-15 mins till golden brown.
* Remove immediately and cool on racks.
* If desired, ice them with a rosette of buttercream or ganache.
* Makes about 50-60 mini-muffins, which are ideal for a birthday party.

Note: This quantity also makes approximately 18 regular muffins.

This one has Chocolate Chip Vanilla Buttercream

Now for the frosting, which was by far the best tasting frosting I have ever made!  I only use real butter- I know, it's "bad" for you, but nothing that tastes this good could possibly be bad:)  Highly coveted recipe.....

1/2 cup of room temperature butter
2-3 cups of sifted icing sugar
1/4 cup frozen raspberries pureed with 1 tbsp triple sec or orange juice

Beat icing sugar with butter until creamy- add as much or as little as you like to get the best consistency- I mixed in about 2 1/2 cups and made a really stiff frosting first. Add the raspberry puree- again, you can add as much or as little as you want depending on how much of the raspberry flavour you want to come through- I went with the whole amount, which made a beautiful deep rose colour. Pipe (or spread) onto cooled cupcakes. Let them sit overnight so that the flavours blend.

Let me know if you give them a try, I would love to hear from you!

This one is for you Jean....

Perhaps the most sought after recipes that I use regularly are the vegetable popsicles.  I know, it doesn't sound that appealing- but my kids love them so much that they don't even ask for the sugary water ones that they sell in the grocer's freezer.  If they are going to have sugar in their diet, I want to be the one to control it!

Daisy and the mutant pop- Love at first bite!

Basically I always use pineapple as a base, for the digestive properties and also because it covers the taste of almost everything. I puree whole fruit instead of just a bunch of juice because Owen does not eat enough solid food to allow for empty juice calories. Just mix away really- it's kind of like when they are babies and you are starting them on puree- start with milder flavour and just keep adding as much as you can get away with!

There are a number of variations you could make.  Change it up a bit!  I will periodically add to the page as we try new variations.  The general rule of thumb is to start slowly with the vegetables, and increase with each successive batch.  With the Mutant Spinach Pops I started with a couple of handfuls, and now I can get about 2 or 3 packed cups of spinach into each batch.

Mutant Spinach Pops

1/2 pineapple, cored and cut into chunks
1 cup of fresh spinach, or more-
Orange or pineapple juice
Touch of honey if desired
Raspberry goes well in this mix, so toss in a handful of frozen berries if desired

Blend on high speed until smooth.  Pour into molds and freeze.  They won't last long!

Spaghetti Squash, Strawberry, Orange
1/2 pineapple
1/2 spaghetti squash, cooked (butternut may work too)
1/2 bag of frozen strawberries, or equal amount fresh
Splash of juice (I like to add fresh orange)
a bit of honey, if you like
Toss in some mango or peach chunks if you like

Throw in a blender and puree until smooth.

Broccoli, Raspberry

1/2 pineapple
Leftover steamed broccoli (I used a bit more than a cup)
enough raspberries to make it taste good :)
splash of juice
touch of honey
Mango goes really well in this one so add away...

Throw in a blender and puree until smooth.

With any of the above recipes you can add yogurt or coconut milk to make a creamy variation that is a little higher in fat and calories.  They make a great dessert year round, and in the summer months my kids end up going through 10 or 12 a day.

The above recipes also double as smoothies in our house.  Just add a few ice cubes to the mix, yogurt if you like, and you have a mini meal.  I may add a tablespoon or 2 of macadamia nut butter or tahini for Owen, for fat and protein.

Confessions of a Neurotic Mommy

It's been a long week of sniffles and sleepless nights around here.  We've spent the last little while rushing around and getting used to the new schedule of school, fought the bus company on a daily basis, filled out paperwork, managed to squeeze in a few appointments, parent teacher night, grocery shopping, cooking, cleaning...you know how it goes!  Unfortunately, with the latest virus, Owen's appetite has been nonexistent.

Taking his little sister to see his classroom

Here is the confession:  It is hard for me to eat when I know that Owen is not getting enough calories, or when I know that there is nothing on the menu that he can manage. I really can't put food in my mouth after the wait staff look at me sideways for NOT ordering him a meal and placing a Neocate Splash juicebox on the table instead.  It is difficult to concentrate on finishing a meal when I know that I will be taking him out of a restaurant before the complimentary kid's sundae arrives -they don't make them without milk products so he can't have one.

I find it hard, and sometimes almost impossible to eat when I watch him struggle with something that is vital to human existence.  Hence my avoidance of the dinner table and the panic that ensues when we are asked out to dinner.  I have become a master at moving things around my plate with my fork to make it appear as though I have eaten, while engaging in a masterful display of conversation.

I realized this morning, while baking yet another pan of goodies, that I compensate for Owen's lack of interest in food by constantly experimenting in the kitchen.  Not sure where to go with that thought, but I'm sure that at some point there will be some money invested in some intensive therapy for Neurotic Mommy.  I will write a post later that explains why I feel like I am losing the battle- I need to save it for a day that I don't feel like crying my way through it.

"A mother’s feelings of nurturing and parental adequacy are connected to her child’s eating." --Suzanne Evans

We learned some interesting things at the Feeding Assessment that we had through Kingston's Child Development Centre.  One being that he would do better with Neocate Splash because of the higher protein content.  Protein is especially important before and during school for fueling the body and helping kids learn. They confirmed that he has multiple issues that prevent him for eating a normal diet- oral motor, coordination, using both sides of his body at the same time to name a few.

He doesn't chew effectively.  His tongue doesn't work right.  In short- he's a bit of a mess.

The good news is they feel that he should have a program, and he should be followed.  All that I can say is that I am eternally grateful for their words, and for the help that they are trying to put in place for him. I still don't understand why it took me 3 years to get a proper assessment done, and I'm even more confused after looking at the new local Children's Treatment Centre web page, because it now says that ALL of these services are available here, you just have to ask.

The Kingston team also suggested that we try adding soy into his diet, because it will increase his protein consumption, and it is fortified with iron, B12, calcium and D3, which if he can take in enough, will eliminate the need for additional supplements.  I'm not a huge fan of soy, but because we have taken milk products out, and he eats no meat, I will give it a try.  Beans are another great way to increase protein.  But he's not likely to start eating baked beans overnight.  So while we wait for his program and therapy to start I am baking with beans.

Sometimes, a "bumble" turns something rather boring into a masterpiece. I was really tired the night that I gave these new brownies a whirl, and for some reason I tossed a banana into the blender just after adding the eggs.  I couldn't take it out, that would be a waste!  As it turned out, the banana was a welcome addition to the texture- Jon said he could hear angels singing when he took the first bite, and Owen enjoyed them as well, so they get a passing grade in our house.

Black Bean Brownies

Moist with a crunchy crust, and full of chocolate flavour!

• 1 19oz can of black beans, drained and well rinsed
• 3 large eggs
• 3 Tbsp oil
• 1/2 cup demerara sugar
• 1/2 cup unsweetened cocoa
• 2 tsp vanilla extract
• 1 tsp baking soda
• 1/4 tsp salt
• 1 square bakers chocolate, grated (Milk free for us, but add what you have!)
• 1 over ripe banana

Combine everything in the blender and puree until smooth.  Pour into an 8x8 inch lightly greased pan.  Bake at 350 degrees for about 30 minutes, or until edges start to pull away from the side of the pan. Cool.  Cut into 16 squares.

You could frost these, but I opted to leave them plain to keep them lower in sugar.  If you compare the nutritional value to regular boxed brownies you will be shocked- 1/16th of the bean brownie recipe provides approximately 9g of protein, compared to 1g in most commercial brownies of the same size.  They cut the sugar in half and are high in fibre.  Of course I had to send a note in his lunch bag to be sure that they would let him eat it at lunchtime since it doesn't exactly look healthy- but for the moment it is the best I can do with what I have to work with.

Packing a lunch for Owen is the biggest challenge I have had in a while

Has anybody else had any luck with baking with beans?  I would love to hear about it!

What I Would Have Told You, Part ii

Part ii

"I feel like I was able to provide better health care for my dog than for my child.  It should not feel this way!"  January, 2011- words spoken to a very kind Critical Care pediatrician that was willing to listen.

I would have told you, on our first visit, that I don't do well with soft science. But you appeared rushed, with an office full of patients, and I did not feel that I needed to explain my personality. You see, I am a logical and rational thinker, and my primary goal in life is to understand the world around me.  I need proof. And then I probably need even MORE proof, just to prove it.  Understanding other personalities and learning styles plays an important role in effective communication- I just assumed that since you are in the business of communicating with people that you knew this.  In order to get information across to another person you really need to understand how they will interpret what you are saying. You need to make adjustments in your language, allow time for questions, and be prepared to say that if you don't know the answer, you will find somebody who does.

Please, above all else, understand this- you are talking about my child, in whom I will never lose faith. Whatever you tell me, I will be taking home, and reading, searching and asking questions about. This is not to prove you wrong,  but to better understand the mechanisms at work, and to provide myself a strong knowledge base from which I make decisions. If you want me to have specific information that you believe to be "true", you need direct me to where I will find it. Otherwise you risk debating me at a later date. (Trust me, you don't want to do this- my husband can attest, ENTP personalities LOVE to debate!)

I would have told you that in a world where approximately 65 percent of the population relies on visual information for learning, it is irresponsible to let me leave your office without a piece of paper reminding me of what you have told me. Providing me written instruction reinforces what you have said, and saves both of us the frustration of trying to get the same answers from you a second time.  It adds value to your service. I know you think that this will be a pain to organize, but standardize your treatment plans to common health issues (like ear infections and stomach flu) and move on from there. It will save you a ton of time in the long run, and helps me gain trust in your advice. I could go on forever about the inequities within a service driven industry that does not recognize that an empowered and well informed patient will also be your best patient, in turn making your job easier.

If you would have told me about the pivotal role social media in health care would play in our journey, I think I would have laughed at you. (I am no slouch when it comes to the internet, but until Owen came along, for me the computer was really just an overpriced recipe search engine!) The idea is not new, as there have been support groups and bulletin board services available on the internet since its beginning.

These are places to go for support, when people's problems are not being addressed by their medical teams. What they search for is understanding, satisfactory answers to questions they have not already found. Sometimes, with a less common diagnosis, the internet is the only place one may find support for particular conditions.  Previously, these operations were typically run by volunteers with similar health issues, and not monitored or moderated by anyone in the medical profession.

Times are changing my friends. The new breed of social platforms like Twitter and Facebook provide users with an ability to find an even larger support base, bulletin boards and support networks are being built by not-for-profit patient empowerment groups and the internet is becoming sleeker, making it much easier to navigate. Some progressive medical establishments are providing their patients with health care "portals" allowing them 24/7 access to not only trusted information sources but appointment scheduling, test results and, bear with me here, I know you won't believe this but- email access to medical staff to answer questions!!

Without these socially based medical groups I truly would have been lost in the system, overwhelmed by terms I did not understand, frustrated by lack of information, and floundering when it came to moving forward with medical decisions. In a sense, standing in those different medical offices, I was suffering from a debilitating case of learned helplessness, feeling as though I had all power removed, naked, unknowing, hiding my high school diploma and accepting whatever scraps I could, just to get by.

Some of the best information I have been able to find in regards to 11q triplications has been provided to me by Chromosome Disorder Outreach, a web-based not for profit support group that was kind enough to send our medical information to a Geneticist, along with my questions. A response landed in my email account less than 24 hours later, along with two published scientific articles on 11q disorders.  Unique, another web-based chromosome support group also provided me with information on genetic disorders, including a number of publications that explained basic genetics in plain language. Over the course of our journey I have spoken with Researchers, Geneticists and Professors in the United States, England, France, Japan and Italy. I am almost sad to say that this information was provided to me free of charge.

Our own Geneticist was obviously paid for through our Provincial Health Care Coverage, and while I appreciate knowing the results of our testing, I have received little or no information from them. When physicians and medical professionals don't provide patients with the information required, patients will find it themselves. And there will be no guarantee that the information we find will carry an ounce of truth. Our experience with health care social media has been absolutely, without a doubt, invaluable. 

Imagine my surprise when I scanned Twitter for the first time and discovered that our trusted Pediatric Clinic (Quinte Pediatrics and Adolescent Medicine) was already there- ready, willing and able to delve into the uncharted territory of health care in social media.  And they do it WELL.  They are, in many ways, reinventing the face of Canadian health care, and are sure to become leaders. I am happy to say that my faith in them has never faltered, in fact, it has grown.

Where there was once the darkness of no information, and little help from our own specialists, there is now light. An offer arrived from Italy to have the entire family tested for the genetic anomaly at no charge. My faith in the Ontario Health Care system, that I once believed in, is dwindling, and I am suddenly willing to cross international boundaries in the fight for information concerning my child's health and well being. This is an ethical dilemma for me. I do not want another family to have to struggle as much as we have to get this far, but I'm not sure what other choice we have.


I would have told you, almost six years ago, that our health care system and support networks were adequate, and that I believed that everyone that used them got the care that they required. But today I am much wiser, and I stand before you and say that it is time for change. There is a better way to this!  I have found my voice, and I now feel empowered. I may be small town, but I have big ideas for change. 

This one is for you!  Love you all so much!

What I Would Have Told You

Part One:

Sometimes, sitting in a doctor's office is a very frightening and overwhelming experience.  Especially when they get to the questions.  I cannot tell you how many times I have been asked "What is your level of education?"  And I have honestly been horribly embarrassed to reply, "Uh, high school."  And when I say embarrassed, I mean the soft spoken eyes cast on the floor as I gently kick at an imaginary rock variety.  Even as I type this I feel my cheeks heating up.

I would have told you that my formal education stopped at high school, but my capacity to learn has continued.  This is a good thing, because without this, my son may well have been lost along the way.


I would have told you that I'm not sure why I fought so hard against an initial diagnosis of Autism.  Perhaps because I'm hyper analytical, or maybe it's just plain stubborn.  I know that I have likely frustrated many of our therapists.  And I am completely sure that I have backed more than one Doctor into a corner.  I know that I have stumped a few with my questions, and angered a few with my stubborn approach.  I have certainly been dismissed by more than I care to admit. There have been naysayers (just take the diagnosis and be done with it) as well as a number of positives (it sure doesn't look like Autism to me) and a few other interesting characters along the way.  I fully expect that many of them believe I am crazy.  But I'm okay with that.  Because the reason I am the way that I am is because my son needs me to be.  As it turned out, my little blonde boy has a genetic anomaly.  And it's rare.

Genetics are a tricky subject, and the science behind it is still, after all of these years, in it's infancy.

You see, all of our DNA is encoded with genes that tell us how we are supposed to develop.  It is sort of like our unspoken human tradition that guides us through all of our milestones. When there are missing or extra genes, our bodies get mixed messages, and we develop in an atypical manner.

The happy noises of a boy that could not move his mouth to imitate sounds:

What would I have told people, if I knew then what I know now.  First, my son is unique in his genetics, but his symptoms are commonly found in children with chromosome abnormalities.  He has feeding issues, present at birth, not well understood at the time because I had never nursed a baby before. His little body has mixed tone- truncal hypotonia (low muscle tone in trunk region) and limb hypertonia (arms and legs are stiff).  He has hypoplasia of the enamel, which I did not cause by feeding the wrong things or not caring for his teeth- they formed this way. There is oral defensiveness, he is missing one tooth and has one peg shaped tooth. He has a high arched palate, and great difficulty with speech and language.  At times he has expressive aphasia, as well as disorganized and delayed speech. He has difficulty with oral motor control and coordination, a severe gag reflex, and difficulty chewing.  He has pectus excavatum, which may (or may not) be from repeated bouts of sleep apnea.  He was plagued by upper respiratory infections until the age of three.  There are chronic GI issues and high fevers.  And the newest term, vestibular dysfunction, which I have just learned about this past week.

If we take a moment to look at behaviour and learning disorders common in people with chromosomal disorders we will see things like Autism, autistic-like tendencies, Oppositional Defiant Disorder, Obsessive Compulsive Disorder, ADHD and Sensory Integration Dysfunction to name a few.  In our case, we see a few autistic like tendencies, but have little if any behaviour issues.

The list of technical terms appears somewhat impressive.  But I did not learn these terms or their consequences in a medical establishment.  I learned about them by reading, and losing many nights of sleep trying to figure out the mystery that has unfolded before my eyes.  I have spoken to many of the world's experts through email, and I am often surprised at just how far they are willing to go to answer my questions.  Sometimes though, I am a little sad about how things have worked out, and immensely disappointed that I have had to search so hard for answers.  Part of this is simply geography, we are from a small town and have limited access to service providers. Part of it can be attributed to poorly implemented system of help for those in need.  From another angle, a portion of it could be lack of communication between health care teams and patients.  One thing is for certain, there are days when I find myself angry at a system of health care that appears be to failing.

So where do the failures come from? And more importantly, how do we fix the systems that led to them?

I would have told you that the diagnosis of Autism has been growing exponentially in numbers since the 1970's. I don't believe it is because of an increase in the actual numbers of patients, but in the number of people with other disorders lumped in. For example, people who present autistic like tendancies are included. The failing is in accepting that diagnosis for the funding benefits, and giving up.  But at the same time, you know you require services, and the only way to get those services is to get the ASD diagnosis.  And then after you receive the diagnosis, your child is somewhat pigeon-holed as far as education is concerned, and when you reach the top of the waiting list for those long awaited therapy hours, you find yourself ineligible for one reason or another.  Each time we lump someone into this expanding group, we move the goal posts, and it appears as though we are facing a new epidemic.


I would have told you that if finding the "right" diagnosis is about meeting a patient's care needs, then a diagnosis of Autism is not helpful in our case.  Once Owen was registered for school, we lost access to the Occupational therapy supplied by our local Children's Treatment Centre, as it was transferred to the local school board.  He will see a therapist during school hours.  The issue is rather murky for me still, since it is not clear how much or how often he will see the therapist.  I am not holding my breath for wonderfully thorough service however, since I am well aware of that the school system is already having great difficulty providing for neuro typical students.  He will no longer receive speech and language therapy either.  The only other therapy option open to him would be Intensive Behaviour Intervention (IBI) - but technically, he is nowhere near the moderate to severe end of the spectrum eligible to receive services, the waiting list is LONG, and as of his next birthday he will no longer be in the age group that is considered highest priority.  On top of that, I know that there are children waiting on this list that are in far greater need of intervention services.

I would have told you that the system is broken, and it's not easy to navigate.  I would have told you that it's not working for us.


I can't pretend to know the answer to  all of these questions.  But I can tell you some of the steps we have taken to help Owen (and others like him)!  Stay tuned for Part ii.


Great resources on the web for children and families with Chromosome Disorders:


Chromosome Disorder Outreach:  http://www.chromodisorder.org/CDO/Default.aspx


Unique Rare Chromosome Disorder Support Group: http://www.rarechromo.org/html/home.asp


11q Research and Resource Network (USA- specific to Chromosome 11q):  http://www.11qusa.org/



European Chromosome 11 Network (again, specific to Chromosome 11):  http://11q.chromosome11.eu/


You can read more about our journey with Owen here:  http://atomickwronglane.blogspot.com/2011/05/owen.html

Almost To Good To Share

Let's call it Oreo Cake, or Cookies 'n Cream, because that is what it tastes like.  Who would have thought that a pound of zucchini could turn into something so glorious!

I wanted a picture of the whole thing, but there isn't much left!

By now, if you have been reading the blog regularly you are most likely aware that Owen has feeding difficulties.  We strive to get quality nutrition in on a daily basis.  Most of Owen's daily calories come from supplemental nutrition in the form of a complete liquid diet.  Anything else that I can get in to him needs to be nutritious, well balanced, and from my kitchen.  This week we spoiled the whole family with a chocolate zucchini cake!  Normally the zucchini would go into muffins or be pureed into a soup for him.

Maybe I'm being a little sentimental, what with school coming in just a little over a week.  Or maybe I'm feeling this way because I am just so proud of him for overcoming so many hurdles in the last year.  Last fall he was still barely speaking.  He had been very ill over the month of August, and his body weight dropped from 30lbs to 26lbs.  He was still in diapers, and I was at wits end trying to figure out how to toilet train him.  He could not dress himself.  He was unable to answer questions.  And I was terrified.

Today, he is up to almost 34lbs, quite the feat when you consider his diet is mainly liquid.  He dresses himself with hardly any help from me.  His language is growing daily.  He is toilet trained, both day and night - although he currently asks for a diaper for bowel movements.  I can live with that while we get his tummy issues under control with the help of the gastroenterologist.  I am so pleased with his progress and how much effort he has put in that I felt a celebration was in order.

So why not celebrate with vegetables, cleverly disguised as CAKE!

I don't see any vegetables in there, do you?

Zucchini Chocolate Cake

• 1 cup all purpose flour
• 1 cup all purpose spelt flour
• 2 cups sugar 
• 3/4 cup unsweetened cocoa powder
• 4 tsp baking soda
• 2 tsp baking powder
• 1 tsp salt
• 4 eggs
• 3/4 cup high quality oil- I used olive oil
• 3/4 cup unsweetened applesauce*
• 1 lb zucchini*, grated

Preheat oven to 350 degrees.  Grease and flour a 9 x 13 inch cake pan.  In a medium bowl stir together flours, sugar, cocoa, baking powder, soda and salt.  Add the eggs, oil and applesauce.  Mix well.  Fold in zucchini, taking care to ensure that it is evenly distributed.  Pour into prepared pan.  Bake for 50 to 60 minutes, or until a toothpick inserted in centre comes out clean.  Cool completely.  This recipe works for cupcakes as well- it will yield approximately 18 jumbo cupcakes.

Now this is a closely guarded secret.  The frosting....caution!  This is highly addictive, and a little messy!

• 1/4 cup of butter (or dairy free spread)
• 1 to 1/12 cups icing sugar
• 2 tbsp organic coconut milk (do NOT stir first- take the cream from the top of the can)
• 1 tsp vanilla extract

In a large bowl, beat butter with icing sugar until there are no lumps.   The icing sugar will fly around a bit because it is so light, but this makes a perfect "buttercream" every time!  Once you have no lumps or bumps left, add the coconut milk cream and the vanilla.  Spread on cooled cake.  Voila!

The result?  A little slice of Heaven!  Enjoy!

*****UPDATED October 18th 2011******

The kids loved the coconut cream filled cupcake version!

I ran out of zucchini before I hit the 1lb mark!!!  What to do?  I know!  Carrots!  Surprisingly, the substitutions below did not change the flavour or the texture of the end product!  Hooray!  More variety of vegetables in every bite!  I should mention that I increased the total vegetable amount in this cake to 2lbs.  Even better!

• 1 lb grated zucchini*
• 1 lb grated carrots*
• 1 cup pureed butternut squash* in place of applesauce

For the cupcakes I piped in a small amount of the buttercream frosting (if it's inside the cupcake it travels well in lunch boxes), but these would be great filled with cream cheese!

Birthday Cupcakes!

Can We Please Stop Here?

I am listening to my little ones play house, and I am struck- in the frying pan to the side of the head kind of way.  They are gently disagreeing- Daisy saying "I want to be Mommy," and Owie saying "No, I want to be Mommy!"  And I think to myself, can we please stop here?

Mommy's a rock star!

Can we live in this moment for just a little while?  Where my little guys think the world of me, and that I am their world?  Before we get to the part where the stuff that goes on outside of our house becomes more important than the stuff that happens inside of it.  Just stop time for a little while, right at the spot where they are still willing to give me the honour and privilege of holding their little hands?  That tiny window where they have a real need and desire for me to be with them.  I treasure it so, and I am suddenly not so sure that I am ready to take a step back and let them go on without me.  I realize that this is a lot to ask, and that life really doesn't work this way, but just this once, can we make an exception?

I am NOT ready for my babies to grow up.

But I guess that it is not up to me, is it?  School is just around the corner for Owie.  I am really nervous about what he will face when he walks out into the big wide world.  I hope they treat him kindly.  I hope he never has to face the harsh words that we have heard in our own backyard.   It would be naive of me to think that I can somehow protect him from the harsh words and ridicule that defines almost every childhood.  But one can always hope.

Only time will tell. 

A quiet moment

One thing is for certain.  Without a doubt, I will be there for my little ones, to dry their tears when it hurts, to share their joy when they succeed, and to enjoy every last moment that we are blessed with.

One to Rival the Best!

I will tell you a secret about me.  I hate being wrong!  Jon would surely go so far as to say that I hate it so much, I won't even apologize if I am.  I would beg to differ, because, well, I just don't think I am ever wrong!  This banana bread is *almost* as good as The Best Banana Bread in the World.  Almost!


With school starting in just a few weeks time (GASP!) I have been trying really hard to come up with some items that I can pack in Owen's lunch.  His solid foods are so limited that this is difficult even when we spend the day at home, let alone packing an easy to handle and esthetically pleasing brown bag meal to take somewhere.  He will eat a few types of fruit if I cut them up really small, and applesauce is a perennial favourite, so I am good there.  The only sandwich he will try is peanut butter- so that poses a difficultly because of the peanut allergies that have become so prevalent in our little ones.  Soy nut butter is out of the question.  Since we feel that he does better with no milk in his diet, yogurt is out for the moment.  And even though his tests for celiac disease came back as negative, we would like to reduce the amount of gluten intake.  What does this leave me with?  Yesterday it felt like a whole lot of nothing, but this morning I was ready to face the challenge.

Enter:  Spelt.  An ancient grain, that has been used for over 9000 years.  It is a cousin to our modern wheat, and appears to maintain a higher nutritional content than wheat.  Some argue that this is because modern wheat is inbred.  I am not a chemical engineer so I am not going to weigh in on that comment!  Perhaps the most interesting part about spelt- it behaves somewhat like a whole meal flour when used in baking, but has a lower level of gluten.  Well, that is good enough for me to give it a go- I have tried gluten free baking in the past, and it's not my favourite.  'Nuff said!


My experiment for today was a high quality, lower in gluten, higher in protein and fat banana bread.  This one will definitely become a staple for Owen's lunch box!  Note that I because of texture issues I grind the seeds and nuts in a food mill whenever I use them in baking.  I never liked big chunks of nuts in stuff when I was a kid either!  You would never guess that this bread has nuts in it- hoping you can see that in the picture below.

Spelt Banana Bread

• 1/2 cup butter, Crisco or olive oil
• 2 large eggs
• 1 cup brown sugar (you could easily use less)
• 2 tsp vanilla
• 3 large overripe bananas, mashed 
• 1 1/2 cups unbleached all purpose spelt flour
• 1/4 cup ground sunflower seeds**
• 1/4 cup ground pecans**
• 3-4 tbsp ground flax seed**
• 1 1/2 tsp baking powder 
• 1 tsp baking soda
• 1/2 tsp salt
• generous handful of chocolate chips

In a large bowl, add butter/shortening/oil, sugar, eggs, vanilla and bananas.  Beat with mixer until smooth.  In a separate bowl mix flour, ground nuts/seeds, baking soda, baking powder, and salt.  Combine with wet ingredients and gently mix.  Toss in the chocolate chips.  Pour into a generous sized (and lightly greased) loaf  pan.  Bake in a preheated 350 degree oven for about an hour, or until toothpick inserted in the center comes out clean.  Transfer to a wire rack for cooling.

**You can omit the seeds and nuts in this recipe but adding an additional 1/2 cup of spelt flour

If you are really interested in the history and nutritional information regarding spelt, you can read more about it here:  
http://www.whfoods.com/genpage.php?tname=foodspice&dbid=143

Fast Food- or Good Food, FAST!

I will keep it short but sweet today!

Sometimes I just don't understand why we rely so heavily on pre-made processed foods. While standing in line the other day at Tim's I found myself trying to figure out how you can slap a two dollar price tag on something as simple as yogurt and berries.  I agree with the idea that it is a healthy choice, especially compared to some of the other items on their menu, but it really bothers me that the healthier choices carry price tags higher than the fat and sugar laden donuts.  Why is healthier eating more expensive?  A trip through the drive through with our three mini monsters would cost $6 for a yogurt and six berries each.  I can buy a 650g tub of yogurt for $2 (which is approximately 6 1/2 cups), and a 600g bag of frozen berries for $4. Making them from scratch at home they could each have two servings (with more than 6 berries each!) and I would STILL have enough berries left over for a weeks worth of smoothies, or a couple of batches of veggie pops...more on that later.... And then I get to be the one that controls the sugar and fat content of what my kids are eating. Unfortunately I do not  know if the berries they use in these pre-made parfaits have added sugar. The ingredient listings in Tim's products do not appear online. They were kind enough to tell us the basic fat and calorie content, but it makes me a little wary of  purchasing their product if they are not willing to make ingredient listings readily available. I could rant about this all day long, but I promised to keep it short but sweet so I guess I need to get on with it.

Super simple breakfast, snack, lunch or dessert idea....you can make these in disposable cups to take in the car with you, toss them in reusable containers for your lunches, make them in the heat of the summer or the cold of the winter. We call them "Breakfast Parfaits" here, and I have to say they are tasty enough to make me want to eat even when I'm not hungry! I normally make them with homemade yogurt (SCD Legal of course) but you don't need to go that far. 

Breakfast in a cup!

Breakfast Parfaits

For each one you will need:

• A handful of fresh or frozen berries
• A touch of honey (if desired- we use raspberry the most so it's a bit sour!)
• 1/2 cup of your favourite yogurt (we like french vanilla)

Toss a handful of berries into the bottom of the cup- we mash them slightly for Owen since big bites are too hard for him.  Drizzle with a bit of pasteurized honey. Top with yogurt. If you want an extra special treat (totally divine!) crush a crunchy oatmeal cookie and sprinkle on top just prior to serving.

**Time saving advice for busy mornings- put the fruit and the honey (if using) into the cups and put them in the refrigerator overnight.  Then top with the yogurt in the morning.  We made a large batch for the children's breakfast at the family picnic last year and doing it this way saved a ton of time.

That's it! And it sure doesn't cost me 2 bucks a kid! This recipe is Owen approved!

What are you having for breakfast?

The Faerie Garden

The Ladybug Family

A change of pace for today....


Since it has been so very hot outside the last few days we have been trying really hard to keep Owie cool.  I am ashamed to say that I never realized that he reacts so poorly to heat.  Maybe it's because I put too much stock in what other people say, and maybe it's because I am just not nearly as observant as I would like to think- but whatever the cause, I missed it.  Meltdowns are ACTUALLY Owen melting down- he is too hot, and can't regulate his body temperature!  So five long summers filled with vomiting and dairrhea, bright red ears and feeling miserable, we finally hold the key to comfort.  It comes in the form of a cooling vest.  A wonderful invention that you soak in some water for 60 seconds and wring out- it provides about 2 to 3 hours of cooling comfort for a little boy that only sweats in one spot- the right side of his forehead.  We took it to the beach on the weekend and we ended up with an incredibly cool lil' Owen!  It's not perfect, but it does help!

The First Faerie House

So to help keep everyone cool I decided that a project was in order.  Something to keep little hands and imaginations busy during the hottest part of the day.  We are turning the back garden into a safe haven for Faeries!  Daisy has been so excited to run out every morning to see if they have taken up residence in the little houses.  Her delight is contagious!  We talk about all of the things that make the Faeries want to live in our garden- they love shiny things, and they must have little houses to sleep in.  The kids have had a great time decorating cheap old birdhouses, and this also exercises fine motor skills in preparation for school this September.  Rumour has it, if we sit quiet, and watch long enough, we can even hear their little Faerie wings tinkering...of course, this sound is supplied by little bells tied into the top of the magnolia tree.  There is even a Faerie trap, a shiny silver lantern filled with marbles.  I can't wait to catch a Faerie in it!

The Faerie Trap

The Best Banana Bread in The World

It has been a busy week at Casa des Sprung!  We have had appointments almost every day, and having to do them in the heat has not been fun.

Our first appointment was one that we have waited a long time for.  Owie had his barium swallow study at BGH.  Now I am not a huge fan of the place because we have had some bad experiences, but this time it was pretty good.  He had a lovely nurse, and the Doctor that did the test showed amazing patience with him.  Which was a good thing, because I was not aware that the upper GI rads require that one stand on a table that gradually tilts the patient back into a laying position.  Did I mention that Owen has great difficulty with balance and proprioception?  Can you imagine trying to convince a frantic boy (who really was more like a fractious cat) that he not only had to drink the barium but that he had to stand on a table that was going to make noise and tip him backwards?  Once the panic set in, and I explained WHY he was so panicked, the doctor was nice enough to alter the test.  Which was a good thing because I had no idea how we would have gotten him do it.  Once the table was flat and he was sure that we were not going to tip it he laid down and drank the barium with no questions asked.  He wiped his tears as he drank the "special juice" and watched his tummy on the monitor.  The nurse asked him what he would have for breakfast when his test was done, to which he tearfully replied "Banana bread".  How could I not run home and bake him some after such a rotten morning?


The nurse looked at me funny when I said that in the veterinary hospital we sometimes used barium for dogs that had ingested foreign bodies (like children's toys, or large bones) because it often pushed the item through the intestines and prevented expensive and invasive exploratory surgeries.  (As a side note I could tell you such stories of interesting objects that I have seen come out of dogs!  More on that later)  She said that barium is often constipating.  Well, warning- in Owie's case, it was sooooooooo not constipating.  I better leave it at that!

Now we prepare for the scope and biopsy later this week.  That test is done under sedation, so it's worrisome, but much easier on him mentally.


So your treat for this week is a sacred recipe for The Best Banana Bread in the World.  I have no idea where it came from, other than somewhere in my childhood.  The combination of the larger amount of baking soda and the long slow cooking time make this bread dark brown, and very moist.  It is not heavy and glutinous, just full of flavour!

The Best Banana Bread in the World!

• 3 medium very ripe bananas

• 3 to 4 eggs
• 1 cup sugar (I use brown or demerara)
• 1/4 cup olive oil
• 1/2 tsp vanilla extract
• 1 1/2 cups flour (GF blend works well)
• 3 tsp baking soda
• 1/2 cup buttermilk  or sour milk (make sour milk with 1tsp lemon juice plus milk to equal 1/2 total fluid)
• 3/4 cup of chocolate chips **optional, but as a mom I must remind you to never underestimate the power of a chocolate chip!

Now you get to see just how lazy a cook I am.  Preheat oven to 275 degrees.  Throw the bananas in a large mixing bowl with the eggs, oil, salt and vanilla and beat the heck out of them until the mixture is smooth.  Next, measure the flour and soda in a bowl, mixing well.  Then toss it in to the bowl with the banana mixture, turn your electric mixer on and slowly pour the  buttermilk in.  Stir in the optional chocolate chips.  Pour into a lightly greased and floured 9x5 inch loaf pan.  Bake at 275 degrees for 2 hours.

Yes, you read the right.  The low temperature and the long cooking time are correct!

I have altered this recipe a number of times.  Sometimes I double it and cook it in a bundt pan (oddly, times and temps stay the same) and use a cream cheese frosting for a special treat.  And sometimes I replace 1/4 of the flour with finely ground nuts to increase the protein and fat content for Owie. Raisins or dried cranberries are a welcome addition as well! 

We love this bread so much that I often buy extra bananas just so that they will go brown.  We will be having it again this morning, along with spinach smoothies before we head to the beach!

Spinach Strawberry Pineapple Smoothies...

 So, what are you having for breakfast?

~j

High Protein, Low Sugar Frozen Yogurt

Mommy's helper, licking the whisk..shhhhh!

Happy Canada Day everyone!  Today I have a guest in my kitchen.  Let me take a moment to introduce you to Miss Daisy.  She's a feisty little thing, don't let those big eyes fool you.  Our kitchen mission for Canada Day is two fold- Owen needs a good protein boost, and we need a special dessert.  With two weeks left before his scope the milk products are still in his diet.  To be honest, I cannot wait until I can take them out again, but that poses problems as well.  Milk is an easy protein and fat boost for him.  Once I take it out, I will have to search for another source.   I suppose it will give me something surf cyberspace for.

About a year ago I happened upon a brand new ice cream maker.  Now, I didn't find it at a conventional store so to speak.  I found it while bargain hunting at Value Village.  I had been longing for an ice cream maker for years and years, but the bottom line is....I'm cheap.  Not in a bad way.  I just have a hard time justifying a kitchen gadget with a hundred dollar price tag if I don't know how often I will use it.  That amount of money will feed our family well for a full week and a bit!  I just about had a coronary when I found one, package intact, sitting on a lonely shelf.  And the price tag said (ready for this?) $19.99.  DONE!  I had that machine in my cart and up to the till in about 15 seconds flat.  After having the ice cream maker home for about a year, and reading the ingredients in most commercial ice creams, I would have to say that I would have easily spent a hundred bucks on a new one.

A word about cream....Have you ever looked ingredients on the side of the cream container?  I know this sounds stupid, but I didn't really think that there would be a need for ingredient listings on cream.  I mean, it's CREAM, right?  Comes from a cow, floats to the top of the milk, tastes good and rich when it's whipped up with sugar etc.  I was shocked one day about a year ago when I noticed that my cream had an ingredient list- with a whole bunch of stuff that I could not pronounce!  I have since refined my shopping habit and check ingredients on just about everything we buy.  We are very lucky to have access to Reid's Dairy products- which have nothing but milk and cream added to their 5%, 10% and 18% creams.  I have yet to find a whipping cream that does not have stabilizers  added.  If I do happen upon one, I will definitely let you know!

Normally I use my own homemade ridiculously high fat yogurt for this, but today I wanted to try something with a little more protein.  Unfortunately, the PC Greek yogurt is also fat free.  I made up a bit of fat by using whipping cream instead of milk. The basic recipe is below, please mix it up as much as you like.  I think that I would have preferred strawberry or peach flavour.  But the kids like raspberry, so I caved.  You could also use a tablespoon or so of liqueur (triple sec, chambord, or perhaps a little Godiva White Chocolate?) to keep it from freezing solid.

• 2 cups President's Choice Greek Yogurt
• 1/2 cup milk *
• 1/2 cup sugar or honey
• 12 oz raspberries, pureed and strained of seeds

Strain pureed raspberries

Combine the yogurt, milk, and sugar in a medium mixing bowl; using a
hand mixer on medium speed, mix until sugar is dissolved, about 1-1/2
to 2 minutes. With the mixer on low speed, add the berry purée and mix
until combined, about 30 – 40 seconds. Turn the machine ON, pour
mixture into freezer bowl through ingredient spout and let mix until
thickened, about 25 – 30 minutes.  Seriously, there is NOTHING to this- and the result?  We were all smiles for hours!

Add the fruit puree to the yogurt

Mix well, pour into ice cream maker

Action shot.  BUGGER!

20 minutes is a LONG time when you are three!

Add a few kids and a hot day and you have success!

Owie is eating it!  HOORAY!!

To eat is a necessity, but to eat intelligently is an art.
- La Rochefoucauld

What are we having for breakfast?

Sometimes, I secretly wish that things were different.  I wish that life came easily for my little man, that he didn't have to struggle so much with things that the rest of us take for granted.  I wish that his body worked better for him, and that his speech was clear to all who listened.  I wish that he didn't have to spend so much of his young life being weighed and measured by what his "neurotypical" peers are currently achieving.

But above all else, I wish he would eat.

I cannot tell you how heartbreaking it is to watch Owen come to the table so hungry that he is shaking, only to gag repeatedly when he sees his plate, and leave without taking a single bite.  I would give anything to see him eat a hamburger, or a vegetable, or an egg that was not cleverly disguised in oatmeal.  There are days where I try not to cry as I make up the plates that I know will never be eaten, and there are days when I just give in to the emotion and let the tears flow.

Owen's eating trouble has been present since birth.  Oh yes, even at that early stage there were warning signs that something just wasn't quite right.  He had difficulty with latching, and often came off the breast gasping for air.  There was no "whooshing" sound of air being passed through his nose.  But somehow, whether it be by miracle, or by Mother Nature, my body adjusted to his needs, and the milk just flowed for him when placed at the breast.  Free flowing milk.  Nice (NOT)!  He would whimper, and I would leak.  He never really had to latch at all.

Hanging out on the porch

One thing is for certain.  A boy can survive in this world without words.  He cannot survive without nourishment.  He has worked hard in occupational therapy to increase his tolerance of non-pureed food.  He has also worked hard trying to increase muscle tone and coordination required for chewing and swallowing.  I am talking YEARS of hard work.  But still, even after all of this time, and removing as many of the obstacles that he has faced like the enlarged adenoid tissue and teeth with enamel hypoplasia, it is still has not changed much for him.  Judging from what I saw in his mouth when I brushed his teeth last, he will have more trouble with teeth in the not so distant future.

My happy boy!

So the question we get asked most often is:  "What exactly DO you feed him?"


The answer to that question is not so easy.  The balance of his caloric intake comes from supplements like Pediasure, and Neocate.  He also receives high test multi vitamins.  And the rest comes from whacky recipes that I try to dream up.  Because he eats so little at a time I try really hard to make every bite count.  Why eat pancakes made from plain old white flour, when you can pack extra punch in to them by adding vegetables,  whole grains, nuts or nut butters and extra eggs?   A brain needs high quality fuel to grow and develop.  Now, I am not a nutritionist, so don't take my word as gospel, but please feel free to take my recipe for Owie's Pancakes:)

The most important gadget!

Owen's Pancakes

• 2 cups Old Fashioned oatmeal, soaked at least 12 hours in
• 2 cups warm water
• 2 tablespoons lemon juice

First thing in the morning, I drain off any excess liquid and toss the soaked oatmeal into the blender along with:

• 5-6 eggs
• 1 large overripe banana*
• 1 cup pureed butternut squash*
• 3/4 cup toasted pecans, or a large blob of nut butter
• 3 tablespoons high quality oil (virgin pumpkin seed, macadamia nut oil. olive oil, etc)
• 2-3 tablespoons sugar
• 1 teaspoon vanilla extract

Blend the above ingredients until nice and smooth.  Then add the following ingredients to the blender.

• 1/2 cup flour of your choice (GF,whole wheat,or spelt work equally well)
• 1 teaspoon baking soda
• 1 tsp baking powder
• 1/2 tsp salt

Oatmeal pancakes in a blender!

Blend until smooth.  You don't want lumps left in these tender little pancakes!  Cook as you would normal pancakes- I use an electric griddle with heat set at 350 degrees, until bubbles form on the top.  Flip and continue cooking until golden brown on both sides.  Serve with butter and syrup, or add some yogurt or jam.  What started as an experiment has become our favourite pancake of all time.  It's quick and easy, and what's better- I can store the leftover batter in the fridge for up to 3 days.  So we can have pancakes even on school mornings!

*you can mix and match the fruits and vegetables in this recipe- sometimes I use pumpkin and add a touch of cinnamon, sometimes I use pureed spaghetti squash and a large grated apple- have fun with it.  And please, if you try them- let me know how they work out for you!