Our Visit With Dr Seuss

Since Maxwell's hospital stay we have made some changes to the way that he eats and have put him on what the doctor calls a pancreas friendly diet.
We have seen some improvement but it certently hasnt fixed the GI problems.
The explosiveness seems to be under control but as of yet he still has constant diarrhea and despite one day of excessive vomiting for the most part its been downgraded to daily bouts of gagging.
Yesterday was our follow up with the pediatrician, I knew that if the results of Max's MRI, stool catches and biopsies were in he wouldnt make me wait until we see the specialist to know the answers.
To both our surprise everything came back normal!!!
I was frustrated and said great now we are back at square one but doing his best Dr Seuss impression replied we're further ahead then we were because now we know what its not. 
He was calling the specialist as I left to devise a plan but for the moment he wants Max to stay on the low fat diet, have monthly appointments to monitor growth and if a GI flare up lasts more then 24 hours Max will be admitted to the hospital.
I'm relieved that its not something serious or genetic but I'm frustrated that we dont have an answer yet.
We see the GI Specialist next week so maybe he will have a better game plan for the next steps....

My Thoughts About Bald Barbie

Recently all social networks have been a buzz with about a group that wants Mattel to create a Bald Barbie for girls who are have lost their hair due to cancer treatments or other diseases/disorders that cause hair loss.
While I think that the sentiment is wonderful in all reality I don't think that Mattel needs to brand a Barbie specifically for this. Any girl can tell you that deep in the bottom of the toy box there is already a bald Barbie from a game of hair dresser gone wrong. Creating a bald Barbie is as easy as finding a pair of scissors or giving a superhero tug on those flowing locks.
What I am finding most surprising is the backlash that this group as been met with, blogs are popping up all over poking fun and mocking something that is obviously close to the hearts of some young women with a caring heart and entrepreneurial spirit.
Most recently I read a blog about Ten Barbies Realer Then Bald Barbie and it spoke about how if Mattel were to create Barbie's that little girls can relate to then ones such as Welfare Barbie, Teen Pregnancy Barbie, Obese Barbie, Anorexic Barbie, ODC Barbie, Meth Head Barbie, Skankified Barbie, Disease and Afflicted Barbie, Elderly Barbie and Bitchy Barbie would be a better choice then Bald Barbie.
I hope that this blogger was trying her hand at comedy and wasn't serious because it would take someone with a cold heart to think of a child with cancer and still write something like that.
As I said, I don't think that there is a real need for this barbie to be created as many exist currently but what I do know is that it was hard enough for my son to lose his hair - a boy who for the majority of his life only had an inch at best so I could only imagine the feelings and emotions that a little girl would have.
In my opinion this really highlights a flaw in humanity, how people can look at a kind and genuine concept and turn it into something ugly and mean spirited.
I'm pretty sure that if these people took a visit to the paediatric oncology clinic they would perhaps think twice about the words that they write - or maybe they wouldn't and will continue to see the world only based on their own opinions and sense of whats valuable and important to only them and honestly I feel sorry for them.


https://www.facebook.com/BeautifulandBaldBarbie

Out Of Reach

The last couple of weeks have had lots of up and downs, Nick got his picc line removed, the paperwork got sent for Riddick to attend a special school better suited to his special needs and Maxwell had his abdominal MRI.
The not so great parts are that while attempting to "fly" Maxwell used my face as a landing pad resulting in me having a broken nose, it wasnt displaced so I dont need it set or secured but I certainly look a little funny. It was noticed that Kurt had something called pronation and so he now requires arch supports in his shoes and in a few years he will require orthotics to prevent his feet from rolling inward while he walks, and the most frustrating part of things recently is the house renovations.... the bain of my existence.
What I thought would be easy has turned into a nightmare. Our intention was to take out a home equity loan to do the renovations but the government changed how this can be done and now you can only take 85% of the equity in your home.
For me this is a problem because after I pay out my current mortgage and the penalties for paying it off early this will leave me with NOTHING.... its a wash so its completely pointless.
Our broker is a smart guy and his plan was to get the value of our home increased thus increasing the 85% available to us but this again created a problem because by increasing the value of our home this has now also increased the debt ratio and so we were declined by the first lender that we dealt with.
Most people renovate their homes for esthetics but I am doing it for safety and functionality. I am gaining no more square footage, no fancy upgrades and for the most part the floor plan is staying the same but I need a more efficient furnace, hepa filter and insulation in the basement so that the temperature doesnt fluctuate. Our biggest two plans were to relocate our laundry facilities to the washroom so that it can be locked and secured from the boys and then to open the stairwell in the kitchen so that I can see the kids when they are on the lower level.
I am now stuck between a rock and a hard place, if we get turned down again then I need to decide whether to borrow the cost of the renovations from a private lender who will charge a very high interest rate or to aggressively save for roughly two more years so that I can pay out of pocket without needing to borrow.
I dont really have much choice, I cant press pause on the development and medical requirements of my boys.
I get annoyed because it feels like nothing comes easy for me, everything requires so much work, waiting and frustration.... if all of this is designed to instill appreciation I get it, I am full of appreciation already.
I will figure things out, I always do - but the notion that it always feels like I am grasping for things that are just out of my reach is emotionally draining.

New Year With Some New Plans

Its now 2012 and the plans that I made in 2011 have been reconfigured, adjusted and perhaps put on the back burner till who knows when.
After Dom and I had Maxwell we decided that we wanted more children....
we would be the Brad and Angelina of the ordinary world.
Our attempt resulted in a chemical pregnancy but although sad we decided that it was only a stepping stone to the baby that we are meant to have and so plans were made to try again. We lived frugally and saved money but when we were ready to start the ivf process again Nick was diagnosed with cancer. The saved money was spent on more important things and I debated about whether having more children was a smart idea. As the months went on I came to the decision that changing our plans was like letting cancer win and that having more children did not make me a bad mother to Nick because of his cancer or to Kurt or Riddick because of their developmental needs or to Maxwell as the baby of the family. As we got to the point of being ready to begin the process, this time around Maxwell got sick. My soul took another knock and I again questioned my plans for the future. Clearly this has to be a sign right? That every time we decide to try and conceive again something happens, or is it a sign that I should keep going because clearly my desire remains consistent no matter the speed bumps that we encounter.
Am I foolish or determined - I just don't know.
So now here I am with a fridge full of pharmaceuticals intended to help me get pregnant and yet I am hesitant. That notion gives me pause to think - If I'm not ready then I am not going forward (a new and unusual concept for me as I am never wishy washy about anything).
This year will focus on getting things on track, creating a happy and healthy family. A warm, welcoming and safe home and a stable and fit me (both inside and out) and if need be some genetic testing to provide peace of mind for the future.
Right now we are planning the renovation for our home and I am learning how to live a healthy lifestyle for reasons other then just because my fertility doctor told me to or because there is an outfit that would look better if I were a bit less curvy. We are focusing on closing the distance that years of stress and strain place on a marriage and we are ensuring that all of our ducks are in a row where our children's needs are concerned.
Being a mother doesn't come with an expiry date and when the time comes that I am ready again, if my body has decided that it isn't capable and it was only a one shot deal then my heart isn't opposed to adopting again (although I will approach it MUCH more cautiously).
I am learning that life isn't about what I want when I want it and that sometimes the plans that I created as a child need to be changed now that I'm an adult. The life that I played out with my barbies perhaps isn't the life that God has in mind for me and I need to be willing to take a breath, reflect on my current blessings and be still for a moment.
2012 is the year for better things, the year for happy things, its the year that will usher in all of the future years which are destined to bring nothing but greatness. Any tears that will be shed from this point on will be tears of joy.... this I am sure of.

Mystery Diagnosis

Maxwell and I were released from the hospital this morning but the diagnostic part of this mystery isn't over yet, we now need to wait for an MRI appointment and for small intestine biopsies to come back from Buffalo.
On Tuesday Maxwell had an upper GI endoscopy done which was not a nice test.... he was strapped to a board and then contrast fluid was squirted down his throat while real time xray images were taken.
At one point there appeared to be a "blockage" which was slowly forced open by making him drink a bottle of apple juice. Once back in our room the doctor came in and told us that in his opinion Maxwell has one of two things.... duodenal web or annular pancreas (see descriptions below).
An endoscopy was scheduled for the following day and the duodenal web was ruled out but the doctor did note that his colon was "twistier then most at his age".
Since the web was ruled out he is now more confident in his theory that its annular pancreas and so the MRI needs to happen to confirm this.
The doctors and nurses were amazing and remembered me from nine months ago when Nick was diagnosed. I got the distinct feeling that they pushed the investigations further then they normally would based on "all our family has been through in the last year" (a comment that I heard multiple times there).
The nurses also voted me "most self sufficient parent" because I changed our own sheets, weighed Maxwell's diapers myself, tracked his weight daily and went to the cafe for milk, juice and jello instead of calling for them. In all honesty the nurses have enough to do without me having them do things that I am more then capable of doing myself.
By the end of our stay Max would push the green button to turn on the blood pressure machine and willingly lift his shirt when he saw them reach for their stethoscope.
He was the "boyfriend" to multiple nurses and his superhero pj's were the envy of many - my boy is a charmer.
This time in the hospital (like always) has given me ample opportunity to think and prioritise and some changes have been made to my plans for the immediate future.
As much as I hate hearing it everything does happen for a reason and what is meant to be will be...... regardless of what plans I had in mind for 2012 my focus needs to be on health and inner peace  for myself and my family
Bring on Twenty Twelve.... We are ready!

Duodenal web

A duodenal web, diaphragm or intraluminal diverticulum refers to a complete or incomplete obstruction at the duodenum due to a membranous web.

Although they are frequently congenital and occur in the paediatric population, some can can present in adults and may also be acquired.

               

Annular pancreas

Annular pancreas is a rare condition (1 out of 12,000 to 15,000) in which the second part of the duodenum is surrounded by a ring of pancreatic tissue continuous with the head of the pancreas. This portion of the pancreas can constrict the duodenum and block or impair the flow of food to the rest of the intestines.

Its Been Quite A Month

December has been quite the month.... even aside from Christmas.
Even though things have been complicated, over scheduled and a bit crazy I am looking at everything as a blessing.
Last week Nick was officially classified as being in remission - my son beat cancer!!!
We still have to go to the clinic to monitor his weight, be cautious about germs etc for the next six months and then have all of his scans repeated every 3 months for the next couple years (and then it moves to 6 months and then annually) but knowing that there is no active cancer brewing in there is a great feeling!
My wee Maxwell has been in the hospital for a week now (but we got a pass to go home for Christmas).
He has had some gastro intestinal issues since birth but we always just thought that he had reflux as a baby and then perhaps a lactose sensitivity like his dad but these "bouts" have gotten worse as he has gotten older.
For a while there would be upwards of 8+ weeks where he would be good and then all of the sudden the poor boy would suddenly begin to explode from both ends. This would happen for a few days and then in the blink of an eye he would be fine again. We switched him from milk to soy and then cut out all dairy completely, I looked for triggers that would set off whatever attacks these were but I never figured it out. Honestly I as so caught up in Nick that perhaps I wasn't as vigilant with my Dr. Mom investigating as I should have been but recently I noticed that the time in between these flare ups was getting shorter. I called our paediatrician and made an appointment for the new year but this most recent one was more then his body could handle. He lost 3 pounds from dehydration and fell off the growth chart landing him in the hospital with the status of "failure to thrive".
We were connected with the GI Dept and they have been vigilant about running tests. They are pretty confident that he has some sort of malabsorbation issue and his body simply cant process something but what they don't know. What we do know is that he tested negative for virus, parasite, lactose intolerance, cystic fibrosis and they are pretty sure that he absorbs fat OK (but the actual test isn't in yet). We are home until tonight and then we return to the hospital for more blood work, a barium swallow and the "gold standard tests"... a endoscopy, colonoscopy and biopsy.
It has been a challenge being away from home but these tests needed to be done and so for that reason I am feeling lucky. Nick has been a great guide for Max, showing him that their "red caps" match on their IV tubes and that the daily saline flushes don't hurt.
 Hopefully in the next week or so we will have some answers......
As for me - I turned 30 on Saturday. The age that I always equated with being "old". I am instead looking at it like wine only getting better with age. With age comes experience and thus a basis for knowledge and intellect. Maybe now I wont get the "your just a baby" comment when people hear my age and I have been told more then once that "30 is the new 20"..... Boy I hope that people aren't lying to me.

Has Anyone Seen My Christmas Spirit?

My Christmas spirit has vanished this year, or else its taking the scenic tour to reach me.
I'm almost done shopping, the carols are playing, the tree is trimmed and egg nog in festive glass jugs sit on the shelf of my fridge and yet my holiday spirit is no where to be found.
Maybe its from the lack of snow or the fact that this year has brought so much "excitement" (for lack of a better word) that Christmas has been robbed of its importance in my life.
I suppose it could be that I don't know what to do this Christmas, this is my first time taking on the role as the holiday matriarch.... its always been my Grandma, and then my Aunt Bonnie and now the torch has been passed to me so it seems.
There wont be the horse drawn sleigh ride, the same trivia question about the age of the tree along the path to the toboggan hill, the potluck in the cabin where the choice between chili or stew is always the topic of conversation. I wont have the wintry small town view from the top of the Liskeard bridge hill and mostly I will be missing some people that play a key role in my holiday celebrations.
Its time to make some new traditions, to celebrate differently to branch out and be the head elf of our house instead of being a worker elf.
I have never really enjoyed valentines day, Easter, Halloween or even until recently Thanksgiving but Christmas was a different story - go big or go home!
We celebrate huge and its always magical (despite the fact that each year I end up plagued with the holiday blues after the celebrations wrap up). 
I don't know where my spirit is but it needs to get here soon - there isn't much time left and I don't want to be on the naughty list.