Letter To Santa

Dear Santa;

I would like to start out this letter by saying that I think since last Christmas I have been very good, I have done my very best to tame my road rage, control my frequent eye rolling when I hear something dumb and at the very least try to mask my amusement when one of my children repeats a less then polite word that I have said. I have apologized when my husband has pulled one of my long hairs from his throat during mealtime despite wanting to tell him that his his fault for giving me "the look" whenever I mention getting that sleek short bob cut that I love on a celebrity that I cannot stand (*cough cough Jenny McCarthy*).
I have avoided the urge to drop to the ground and openly weep every time a sleepy child lets me know that they have again had "an accident" in bed and I have developed a gentle "try harder from now on" look whenever my teenager brings me dishes from his room that are furrier then our pets.
I know that I am far from perfect, there are still many things that I need to work on - I need to work on not telling rude strangers that the correct response to Thank you is You're Welcome and I need to try to stop wearing my dirty hot pink Crocs out in public (that last one is soooo hard but the fact that there is a hole in the bottom should make it easier).
Thank you for your Video Email to the boys, Maxwell now reminds me that he needs to try harder to eat as he is spitting his food back onto his plate and Kurt asks me multiple times a day what kind of sculptures your elves are able to make out of ice. Riddick likes to watch the live cam that shows your reindeer eating and rolling in the dirt at the north pole.... perhaps you could put a tab on your page that would tell parents how to explain to their children why there is no snow at the north pole.
My list this year is pretty simple, have Nick remain in remission, let Maxwell sail through his open heart surgery without any complications, continue to have Kurt and Riddick thrive in school and help me to not have a nervous breakdown come September when ALL of my children are in school full time. Its still nine months away and I already get sad about it sometimes.  Oh and a new hair straightener because my hair is a hot mess most days.
I will apologize again for you not being allowed access to our house but Kurt is afraid of you wandering around while we are sleeping, don't take it personally I'm sure that the tooth fairy and Easter bunny have mentioned that the same rule applies to them as well. As a thank you for your cooperation we will be leaving you an extra large plate of treats at my mothers house, I'm sure that you will enjoy a sampling of the calorie laden desserts that have peaked my interest while wasting too much time on Pinterest.
Thanks again for all of your magic and the warm and fuzzy feeling that you bring.... I certainly missed it last year, so far this year is much better.

Love always;
Cassandra

The Busiest Time Of The Year

November was a busy month for us and December is proving to be no different.
Last month Maxwell had his ESSB test done (also known as a small bowel follow through), this test is often done to check for Crohn's disease. This test is often hit or miss, it either shows something or it doesn't but it doesn't necessarily mean that the disease is not there, since it's non-invasive we decided to do it knowing that it could be inconclusive. Maxwell's results came back normal, the likelihood is that he does not have crohn's (yay!) but to complete the diagnostic process Max will still have the colonoscopy at some point.
Some of Maxwell's bloodwork showed the possibility of an autoimmune issue such as lupus or juvenile arthritis but thankfully a large (and difficult to obtain) blood work-up ruled that out.
One of the things that are still concerning the doctors is the fact that Max is just so slow to gain weight..... we have tried everything that the nutrition team has come up with with very little success, over the last month Maxwell has only gained 6 ounces even though we are using aggressive methods such as adding canola oil to every bottle, frying everything that can be fried and in general encouraging a diet that would cause most people to gain weight at a rapid and unhealthy speed.
The thought is that his heart needing to work harder to fuel his body simply burns more calories then he consumes. Food now plays a big part of our days and we have started to enforce periods of stillness.... story time, movie time with Daddy, lego building, electronic gaming and learning about all kinds of topics like dinosaurs - things that require the body to partially rest.
We have also decided to make the move back to MUMC from Sick Kids. While I love Dr L the travel there and back is a full day adventure which is difficult when there are special needs children at home and now with us mainly focusing on Maxwell's failure to thrive the nutrition team locally is preferred. Dr L is also sending her plan of action to Dr B (aka the arrogant arsehole) for him to continue.
Kurt and Riddick are doing FANTASTIC, we have found a medication that seems to be working for Riddick and last week every note home from school was a good one!
On December 20th it will be the one year remission anniversary for Nick, we are hoping and praying that this is an anniversary that we get to celebrate. Tomorrow is his CT scan and I will admit that I am very anxious about the results. If you remember when it came time for Nick's last scans he refused to do them so its been six months since we last knew that the cancer hadn't returned..... a long time so early post-cancer when the risk of relapse is at its highest. He still says that if the cancer has come back he wont do chemo or radiation again but at least knowing the status of his health will give him the chance to change his mind.
As you read in my last blog entry "L" had commented that she felt N was still fighting cancer then the other night I dreamt of my Grandfather and it left me emotionally shaken. In the dream he told me that he wouldn't see me again but that things would be ok, he then gave me a hug and I started to cry in the dream from a mix of sadness, fear and yet comfort despite the underlying notion that there was something wrong. I woke myself up because of my crying and needed to flip my pillow because it was so wet from tears. Whether this dream was a nocturnal visit from my Grandpa or just my anxiety getting the best of me will only be answered with the results of the CT scan.
Despite the results this is going to be a great holiday - We have made the commitment to have this Christmas be about appreciation, gratitude, love, tradition and family and less about the commercial aspect that is easy to get caught up in.
So far we are succeeding in our commitment and our children are loving the time spent looking at the Christmas lights, filling our home with the smells and sounds of the holidays, watching their PNP videos and writing letters to the jolly guy up north. The best gift that I can give my children is happy memories that will last them their lifetimes....

A Possible Future

Since my last post I have had my meeting with "L" and like before she was able to touch on things that were very accurate. She knew that I have been debating for a few months about exploring an alternative therapy but was hesitant because I was concerned about what others would think of me. The truth is that I have been thinking about Reiki for a long time and have considered getting my certification but that is something that many might consider strange given my logical and rational personality.
She said that we would be getting a sizable cheque from the government in the next few months and that we should have a nice dinner but then should set the rest aside and not spend it as we will need the money - I can only assume this is income tax in March, we do generally get a significant refund but normally use it for medical expenses, towards a new vehicle or our plan this year was to put it towards home renovations. 
She said that some find my positive "light" attitude annoying and I may notice that people are keeping their distance from me.... I am not to chase them, I am to let them go.
While here Nick came out of his room and she said "thats the boy with cancer"
(she has never met Nick) - I said yes but he is in remission now. She then asked me when his last scans were because she feels like he is still fighting.
I told her that its been almost 6 months. She told me to be prepared for the results and the fact that he is  going to refuse western medicine but will be open to a more holistic approach. She told me that this will piss off the doctors and I need to be confident enough to advocate for HIS wishes.
I never did tell her that Nick refused the last scans and didnt follow up with the bloodwork that endo requested because he wont take the medication even if something showed up or the fact that he has been very clear that if the cancer comes back he wont do treatment again.
She also said that a male over 30 will have a heart attack, it wont be severe but it will act like a wake up call and he will stop being so negative and cranky and will find a new appreciation for things.
She also said that I am opening and evolving and I've always has a special gift but I have blocked it by being rational, logical and dismissive.... these "things" are happening so that I will become accepting and stop resisting. She told me that things are still going to happen but that I am able to be in control and that once that happens things will feel normal. She said that the spirit that she feels most predominately here is a little boy (as Max has said... his "ghosty boy") and she said she feels like its our boy that hasnt been born yet. She told me to ask Max if the boy is named Marcus. After Max woke from his nap I said "is your ghosty boy named Marcus and he nodded yes, I said does he look like you and he responded nope, him look like Daddy.
I asked her when this boy would come and she said not for a while as I need to manage the upcoming issues.
All in all it was a good session and I feel like "L" is going to be a great help to me. I am trying to be not so logical and more open to possibilities and will see if anything she said proves to be accurate. If nothing else I felt much better after our session, I felt less crazy and more calm and less influenced by the possible opinions of others. Who cares what people think..... right?
                                                                                    

I'm Coo Coo For CoCo Puffs

 

**This happens whether I am stopped, driving or even just have my battery on without the car actually turned on**

As many of my real life friends and family know a couple years ago I met a wonderful woman who happens to be a psychic. We had a reading party for some fun but little did I know how accurate "L" would be. During the reading my Aunt was told that Nick would "have a rough time" and that it would be a rough year but he would be ok, little did we know that less than 3 weeks later Nick would get his Cancer diagnosis. She also said that my aunt would have surgery on both her arms, this seemed strange as she WAS planning a surgery but it wasn't on her arms... again "L" was right and during the car accident that killed my grandfather Aunt B broke both her wrists requiring surgery to repair them. "L" also said that there would be a male with a heart scare and wouldn't you know a year later Maxwell gets the diagnosis about his heart condition. I know that some of you are skeptical and that's ok, I'm not always sure about my own beliefs but I know that despite my initial just for fun approach with "L" the accuracy of her claims over time have made me more of a believer in her gifts.
I know that I am going to sound a little off my rocker but all of my life "things" have happened around me.... dreams of family who have passed away, sounds & smells and other mysterious things that many describe as "signs". I certainly don't claim to be intuitive or have any special gifts but all I know is that these random things that happen tend to freak out those around me and Dom often jokes that I need to "tell my friends to leave" when things happen around the house.
Over the last few weeks I have felt a sense of calm that I haven't felt in a long time, I simply feel at peace and happy but now suddenly these "things" have picked up and now Max seems to be involved.
While watching Treehouse the other day the toy room TV suddenly went black with the exception of a bright line, a calm female voice spoke of heavenly angels and about how God creates us in his perfect form. Maxwell was entranced in the TV, barely blinking just sitting there eyes like saucers on the TV. I quickly turned the TV off but not before snapping a picture. A moment later I turned it back on and there was Bob The Builder fixing the fire hall just as he had been only moments before.
Maxwell then began waking during the night around 4:22am and speaking about the "ghostie boy".... right now he is prime imaginary friends age so I dismissed his chatter with his new friend.
Now here is the part where I am now questioning my own sanity. I began to notice that when it was only Max and I in the car my airbag warning light would come on. After a couple days of this happening I exasperatedly said "if someone is in this car with me turn that light off right now!" and within seconds the light went off - I almost vomited right then and there!
I have asked my husband to take the car to the dealership to see if there is an electrical problem because I am starting to maybe question my own sanity especially because this only happens when I am alone in the car, it never happens with Dom has the car. Although I felt foolish I "talked to the light" again this time recording it.
I have also booked a session with "L" - I just need to put my mind at ease so that I can stop thinking that maybe I am losing my marbles. 

Lets Get Caught Up

After 72 hours of eye drops

Max feeling much better

Wow its been quite a bit since I have blogged. Its not for lack of wanting to, its honestly just been a lack of follow through. The past month has been a busy one but lots of things have been accomplished.
I started the paleo diet that I blogged about previously and have kept up my gym routine three days per week. So far I have lost twelve pounds and now have twenty five to go before getting back to my pre-pregnancy/pre-cancer/pre-craziness weight.
I will be honest and say that dieting makes me mad and moody (just as Dom), I feel deprived and angry at the world. To combat this I have had to figure out ways to allow myself the yummy stuff, on the weekends I eat what I want (which is most often pizza pizza and chicken bites) - they taste like heaven but after a week of eating clean my stomach gets mighty mad.... its all worth it though.
Right now my challenge is Halloween candy, we have it in abundance and the chocolate bars scream at me from their tiny fun sized packages purched atop my fridge. Today for lunch I had scrambled egg whites, grapes/strawberries and two peanut butter cups - it was a yummy combo.
The part of this new lifestyle that surprised me is how much I enjoy going to the gym. The trick that I use for myself is my ibooks app on my ipad. I only allow myself to read while I am on the treadmill and when I am engrossed in a good storyline the time flies by.
Some movement is happening for Maxwell too, for a few weeks he has been complaining about headaches, eye pain and light sensitivity. Like a decent mother I took him to the eye doctor who said that he was mildly far sighted (but not enough yet to require glasses) and that she saw some inflammation which could be the result of some allergy etc.... ok she's the doc and that sounded quite reasonable.
About a week after our appointment I woke to the sound of Maxwell crying about his eyes, his Dad got to him first and was quite disturbed to find Max looking the way that he did. His eyes were purple and almost swollen shut, he'd looked like he's been in a bar fight.
I made an appointment with the family doctor suspecting it to be a possible case of pink eye but that wasn't the case. The doctor suspected it to be something called Uveitis which is common in people who have Crohn's disease. We were given an urgent referral to the eye specialist and were seen within 48 hours, awesome but still problematic. Because Max had been constantly putting his hands to his eyes he had then gotten a bacterial infection which made his eyes (and I quote) "a mess" - the doctor was unable to get a really good look. He gave us strong drops to be used four times a day and instructions to make an appointment when Max starts complaining about the symptoms not when there is a visual indication of a problem.
After hearing about the connection to Crohn's, I emailed Sick Kids GI and told them about what happened and I informed her that I want something done ASAP. This child is dealing with enough without now having his vision effected too.
I was actually surprised when I received an email telling me that they had booked a test called a fluoroscopy (ESSB) which can detect GI diseases and disorders with less risk than a colonoscopy.
The travel to Sick Kids Hospital isn't ideal but I am so pleased with the care that we are getting from them, I am hopeful that we are well on our way to answers.


 To learn about Fluoroscopy (ESSB) click here

Keep Calm And Eat A Cupcake

Over the years people have asked me how I seem to cope so well emotionally with the stress and problems that life tends to toss in my direction and the answer is simple - I eat.
When I'm happy, sad, angry, bored, overwhelmed you name it I deal with it by eating. I celebrate every milestone and heartache with food and my body has paid the price over the years.
Food became my friend and I loved it... I still love it but I now understand that we have a passive aggressive relationship and I can go from feeling wonderful to resenting myself in the length of time that it takes to swallow.
What feels great in the moment quickly turns into a feeling of self loathing which results in self sabotage and binging. Not the healthiest lifestyle to lead.
I have always struggled with maintaining a healthy lifestyle, like my food choices I tend to binge with diet and exercise. I find a purpose such as pregnancy or needing to fit into a dress for a wedding and work towards it like a fiend and when that's done so are my healthy choices.
I realized the other day that I am now five pounds heavier than I was when I delivered Maxwell. That throughout Nicks illness and Maxwell's health problems I have gained close to 30 pounds over the last two years.
That realization came life a kick in the ass - its time to fix this problem.
I thought about the last time that I was at my healthiest and the answer is when I was pregnant. I ate properly and I exercised and I got enough rest.
Its time to get back to that mindset. Over the last two weeks I have been going to the gym and following the routine that my trainer gave me, I restarted my medication for poly cystic ovarian syndrome and was more conscious about my food choices. Despite my efforts the scale only showed a two pound loss, I was frustrated but focused on the fact that its still a loss. I know that to see the real results that I am hoping for I am going to again have to start following the "PCOS diet" that yields the best results for those with the syndrome according to my nutritionist. I previously lost 60 pounds on that "diet" but I didn't feel to great while following it.  I think that the biggest struggle for me is going to be learning to evaluate health based on other factors aside from numbers on the scale or on the tag in my pants.
I'm a work in progress but I am excited to get started (as excited as a girl that has to resist cupcakes can be)

Funk & Information

I am again today adjusting the sails but the path remains unchanged.
Yesterday was rough, I spent most of the day glued to my cell phone waiting for the cardiologist to call with the details of the previous day's video conference between MUMC and Sick Kids. This would be the call that would tell us for sure if Max needed open heart surgery or if they thought they could correct the ASD using the catheter procedure.
Finally around 4:30pm the doctor called..... do you have time to talk now or would you like me to call you tomorrow she asked.
She said that as we suspected the rims of his heart look small and they all agreed that open heart would be the best method however there was a hiccup.
All of the doctors agreed that with Max's GI problems unresolved it is too dangerous to perform surgery on his heart. The possibility of infection is too great and could cause serious complications if there is any bacteria in his body.
The surgery will have to wait. 
Dr. D was very quick to reassure me that clinically Max looks stable and doesn't appear to be at risk of heart failure. I understood their worry and putting my child at risk isn't something that I want to do either but as you know if you follow my blog we are now almost a year into the GI quest and we aren't much further ahead, if GI is what we are waiting for then we may be waiting for a very long time.
Dr. D said that she agrees with me that GI needs to get a move on and she said that she will be personally contacting them to try and motivate them into action.
I spent much of the night in a funk, I was out of ideas and I felt like I was failing as a mother.
Not only is my child always uncomfortable and ill but now he has to continue to live with a hole in his heart because both hospital departments are not wanting to be the one to go first.
Today I kept my routine as usual but while on the treadmill I found a new sense of determination.
Armed with my ipad and iphone I scrolled my contact list and left emails and voice mails for both the GI booking clerk and the nurse.
I manged to get Maxwell's January appointment with Sick Kids moved up from January to the middle of November and I got an email back from the GI nurse with some informative information.
While Maxwell's abdominal nodes are still enlarged they are not as large as they were in December and therefore lymphoma isn't something that I need to be concerned about, it is likely as we suspected an indicator of their being a bowel problem.
She also gave me some blood work results which could be pointing us in the right direction; one of the tests ordered is called ESR (Erythrocyte Sedimentation Rate), this test detects inflammation in the body. A normal range is 1-10 and Maxwell's results were 12. The other test was a common one, a white blood cell count. These cells act as the body's defense and are usually elevated when there is a problem or infection.
The normal level is 5-12 and Max's results were 11.7 
These test results combined with the enlarged nodes and GI symptoms are good indicators of something called Inflammatory Bowel Disease (the main types of IBD are Colitis and Crohn's).
From what I was told the best diagnostic tool for this is a colonoscopy and so I will be pressing for this to occur in the near future.
I wont get bent out of shape over the fact that Dr. Dummy was supposed to do this when he was doing the endoscopy. I will just consider this as another confirming sign that the move from MUMC to Sick Kids was a wise choice. 

Click here to learn about Inflammatory Bowel Disease