Sunday, 25 September 2011

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, 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!

    Monday, 5 September 2011

    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!