Tuesday, 24 January 2012
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....
Wednesday, 18 January 2012
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.
Saturday, 14 January 2012
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.
Thursday, 5 January 2012
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.