I am finally sitting at my computer ready to write, but for some reason words do not come as easy. I look at my last post thinking it might kick this writers block but it only makes it harder as I realize I have not posted anything in a month; the last post: the ringing of the bell. I wish this could be the end of our story but there is still so much more to come.
Boston seems so long ago and details already slip from my mind. I regret not writing in the last month as I sit here trying to recall. But in all honestly, no news is good news! We are back at home and all the details of how we got here seem faded and unimportant now. The important thing is that we are all together as a family again. Trying to find normalcy and routine in between medications, feeding pump schedules and bouts of vomiting.
Josh flew home with Aiden in the evening on Tuesday, December 20th and I drove back with the other boys and Joshes Mom at 1:30 am Tuesday morning. The plan was to leave at 6 am but Lynkon woke up and though it was a great time to go! I guess he did not realize the duty free shop does not open that early. We made it back to Almonte safley around 10:30 am. It gave us the whole day to start and get the house ready. After 3 days of heavy overhaul of our whole house to make it more accessible it was ready for Aiden to come home (BIG thank you to Leena and my Brother). The 3 days can only be described as the most severe case of “nesting” ever imaginable!
On Friday, December 23rd CHEO held up their end of the bargain and Aiden was back home just in time for Christmas and to make it even better we have been at home since! I could not have asked for a better Christmas gift then for us all to be home together. To be able to wake up Christmas morning in our own beds and see the sparkle and excitement in my boys faces as “Santa” had arrived.
The Christmas was not like any before and at times yes it was very hard and emotional but it was also one of the most meaningful Christmases we have ever had. There was also a couple extra “Christmas Surprises” that added to the festivities. Thank you to the “Colautti Group” for the special Santa Drop surprise. I had to explain to the boys that every Christmas would not be like this but that there has been allot of people cheering for Aiden in his recovery and an old classmate of mommies wanted to do something extra for all the boys because they have all been so good and working so hard.
At the time of coming home we did not know when we would have to be back at CHEO (possibly the day after Christmas) so my brother and Sister-in-Law hosted a VERK-Fotherby Christmas with all of Aiden’s Grandparents, Aunts, Uncles and Cousins. It was ONE FANTASTIC CHRISTMAS will all of our immediate family able to see Aiden at one time. Also a thank you to Don’s Meat Market for the amazing Christmas turkey.
So many people have helped in us in so many ways and if I do not mention specifically please know that every bit of support whether emotionally, financially, spiritually, etc. has been greatly appreciated and it will never ever be forgotten. I can not say enough for the community, friends, family and even strangers that have been there for us. This is truly a battle that we could not do alone and no matter the outcome we have felt more blessed and loved in so many ways that words truly do not show justice. Please read post guest to follow on Pediatric Cancer Awareness Dance that was held earlier in the month.
After Christmas, a panic quickly set in as I realized there was no structured rehabilitation scheduled for 2 weeks because of the holiday! In Boston, Aiden did 3 hours a day (1 hr Speech, 1 hr Physiotherapy (PT) and 1 hr Occupational Therapy (OT)). Yes we were at home now but we still needed to work on getting MY Aiden back; the one who can engage a room with a story, run down a golf cart at camp and polish off a full size poutine! ( I do know we may not get it all in the end but I need to know that we tried our hardest.) Thank you to the mom in the hall at R.Tait for overhearing my conversation and suggesting the PharmaPlus Mall in Almonte. The next day I had Aiden up and ready to go for his first M&A (Mom & Aiden) PT Session. I had watched his therapies everyday for 6 weeks, not saying I was close to an expert but I must have learned something. It was nice that Josh was on break from school and he came too. Not only for the second hand but also nice for Aiden to have this time with both his parents. This first session went great! The mall was a perfect place and it tied us over until CHEO called to set up a more structured therapy plan. My main goal was to just get Aiden up moving in order to keep the momentum going that we had started in Boston. We went to the mall 3 times a week and had Aiden do stands, kicks, bowling, golf, scavenger hunt. We would have him walk with walker to the pet store and stand and watch the Betta Fish for as long as he could. When we first started he still hand very limited control of his left arm and when throwing the ball it was like an invisible velcro was stuck to his hand. Over these two weeks this greatly improved. At the end of each “session” he walked as far as he could down the hall with the walker. The first time he made it about half the way but by the end he could go the whole length with a short break half way. We did have to use a little incentive at times. One day Declan and Mumma (Grandma in Finish) came as helpers. The boys were quite happy as I said I would give them each 3$ if they could go right to the end. Lucky for them Mumma said she would match my 3$ each. I don’t think I had seen Aiden move that fast before and it was fun for Declan to feel apart of it too.
Aiden was definitely happy to be home and everyday is improving. Most recent he has even started to make UNDERSTANDABLE SOUNDS!. December 31st was one of the best days of my life as Aiden clearly said MOM! You could see on his face it took all the energy and strength he had; I can not even describe the feeling. Since then more words have been coming, they start off very muffled and more like sound without pronunciation but he is starting to communicate. I have prayed everyday that his words come back before we go to Toronto and they are slowly, Thank You God! He has a very clear “NO!” and as of today (January 23rd, 4 months post surgery) he can say most clearly, “yeah”, “mine”, “Dad”, “Mumma” but also a wider range of words that are there but need to be carefully listened for. Occasionally spontaneous string of words pop out but he can not repeat if asked. His non verbal communication has also greatly improved. He is able to point, sign “you drive me crazy”, put his hand behind his head if he needs break and many more hand signals. It has decreased the frustration level but it has been a constant learning curve for all of us.
“Declan and Aiden were cuddled together watching a show in Aiden’s room. I was in my room across the hall and I hear Declan ask Aiden, ” You like Power Rangers? Thumbs up or Thumbs Down” It is one of my first memories of seeing this new interaction between big brother and little brother communicating. “
As soon as we were at home I also started researching additional options for therapies other then CHEO and closer to home. On discharge we were told there was limited availability and he would only get in once maybe twice a week. The problem was finding someone who specialized in paediatric as well as brain injury I finally got referred to the Carleton Place Hospital which had a opening for a paediatric patient and was able to get Aiden in one day a week for physio. They suggested Aiden use a plasma car around the house which ended up being a fantastic idea! It is not only fun but really good core exercise.
Even though we were now officially on our “6 week break” I use the term “break” very loosely. Starting from the 9th of January we have been to CHEO everyday (pretty much all day) for either therapy, MRI, dressing change, ECG, ECHO, blood draws, dental check up, and other testing. It has been exhausting but coming home every night and being able to snuggle all of my boys is worth the daily trip.
Right now, Aiden is making leaps and bounds not only in speech by physically as well. Watching him with his brothers is priceless and there is a sort of normalcy which has returned. The boys fight as brother do but then they hug and move on to the next game. Aiden is now at a place where we are trying to get him a home tutor and we have been doing science experiments and practicing writing and reading daily (Today we tried typing for the first time which he seemed to like!). The best moment over the last week though would be Aiden standing up on his own from one couch and walking 5 feet to the other couch….NO DEVICE OR HELP! Regretfully, I did not see it but Josh and Momma and Aiden were all ecstatic, scared and shocked as well but mostly ecstatic! His strength is there and better each day, he is still working on balance and fatigue but there is finally a glimpse of the rainbow.
I could write more to this post as this does not even begin to update of where we are at now but rereading this and recalling these past four week I feel happy and positive right now so this is how I leave it for the night. It is true what they say there is no place like home!