Sunday, 23 December 2012
Christmas is in two sleeps and I think that I am ready! Presents are wrapped, food shopping is done and holiday meals have been planned.
The boys are amazingly excited for Christmas and I love seeing how festive they get. This year we focused on donating to the Salvation Army kettles and we selected a few children from the Christmas tree at Walmart. We donated our outgrown winter coats and also made a donation to the flooring fund at the church that runs Maxwell's preschool.
I want my children to love the feeling of GIVING more then the feeling of receiving.
I'm actually quite pleased that I am on top of the ball because the last week has been a bit crazy.
On Tuesday we received Nick's latest scan results and since he hasn't been in six months I will admit that I was nervous. Nick is still classified as being in remission and on December 20th he celebrated his 1st anniversary! The scans did show that the nodes in his abdomen are still large but they haven't grown. CT scans measure size and shape but they don't show active cells. Because of this in March when Nick has his next check up we will likely do another test that shows if there is anything brewing inside the nodes where the CT cant see. The oncologist is confident that things are good but just to be on the safe side its worth checking out. On Wednesday a little after 3pm I got a call from Maxwell's pre-school teacher, she let me know that he woke up from his nap complaining about "his heart hurting", they took his pulse and it was low so they gave me a call. I went to get him and he was saying that his breathing was "tricky" so I decided that a call to the doctor was in order. I wasn't surprised when they sent us to the ER.
The ER doctors pulled up Maxwells previous ECG and chest X-ray and decided to repeat the tests for comparison. The ECG showed "some changes" and the x-ray showed that while the heart was still the same size an area now looks "fuller" which likely means that there is some accumulated fluid. They decided that given the description of what happened and the changes to the tests they should do some blood work to check for heart damage. The test results came back normal so the doctor said that while we couldn't say for certain what was the cause of this "cardiac event" he was confident that there wasn't any lasting damage to Max's heart. He did say that the cause of the fluid pocket is likely that Max picked up a virus due to it being cold and flu season - especially since he goes to pre-school. We discussed Maxwell's attendance and he said that unless he has to be there because there is no other option he wouldn't recommend it. And just like that Maxwell's preschool days were over. He attended the exact same amount of time that he did last year before having to be withdrawn.
The doctor felt that Max wasn't in clinical heart failure at the moment and so this was no longer an ER issue Our instruction were to be seen in clinic by our regular cardiologist within a short amount of time and to return to the ER if there are any issues in the meantime. Maxwell will now go in the beginning of January for a repeat ECG and a check up.
For us life at times is like three steps forward and two steps back, living life like that can be frustrating at times but despite being no genius I still can calculate that with that equation we are still one step ahead - which is good enough for me!
Sunday, 16 December 2012
On Friday the world was again rocked as news of the Sandy Hook Elementary School massacre spread. In the end 26 lives were lost most of which were children. Hero's were created and assassinated simultaneously and the lives of millions were altered in a split second. Images of screaming parents and weeping law enforcement will yet again be engrained in the minds of many.
For a moment I allowed myself to think of the what ifs... what if it was my child.... but I quickly let those thoughts go, they serve no purpose, they only create fear and anxiety.
Yesterday is history, tomorrow is a mystery, today is a gift that is why its called the present - no truer words have been spoken. The truth is that none of us are invincible and life can be altered or lost in the blink of an eye which is why we have to make every moment with the ones that we love count.
I am not a perfect parent (for the record I don't think that one exists) but I try everyday to let my boys know that they are the best thing that has ever happened to me. Some may say that I coddle my children and perhaps they are not wrong but I prefer to think of it as making them a priority.
I gush over horribly colored pictures, kiss and rub non-existent boo boo's, allow a fear filled child to sleep in my bed, sing you are my sunshine a thousand times a day and even listen to Disney soundtracks in my cool car lol. I ask my teenager about his friends, interests and goals and I tell him that I love him and pretend that I don't notice the eye rolling that occurs.
My husband and I end every phone call with I love you and while it may now be routine and expected I know that should God forbid something happen to either of us those three words were never left unsaid.
Tomorrow is not promised its just merely hoped for, anything can happen.... illness, accident or something more sinister but the end result remains the same.
Take the time to make each day count, say what needs to be said, if you have to stop and think about the last time that you intentionally said or did something kind and loving then its been too long.
Put in the energy to create a love that will long outlast the body, one day regardless of circumstance it will be all that is left.
There is never a doubt in my mind that those that I love know it.... they feel it, their worlds are better because of it and mine because of theirs. When I am on my death bed I am sure that I will have a lot of regrets but I guarantee that dancing around the kitchen with my boys while some Christmas cookies burned in the oven will not be one of them.
You are my sunshine, my only sunshine,
you make me happy when skies are grey,
you'll never know dear how much I love you,
please dont take my sunshine away
Thursday, 6 December 2012
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.
Tuesday, 4 December 2012
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....