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....