Tyson has been doing GREAT the last little while. He is starting to sleep better at nights. He still wakes occasionally but usually just needs to be tucked back in and he's fine again. He hasn't been waking up sweating or screaming so I think the nightmares have gone away finally. He still isn't too trusting of when we go away somewhere, as he often says, "No poke arm" when we get his coat on him. His last INR level was this past Tuesday and we won't need to go again until next week Tuesday. As long as his level stays consistent, I think the need for bloodwork would go down to bi-weekly. He actually does very well during the bloodwork, but hates the anticipation of it. He often screams before they even get his sleeve rolled up, but once they have poked him, he enjoys watching the blood collect in the vile. LOL And he does enjoy getting spoiled with stickers afterwards too.
Tyson continues to be an active two-year old with an expanding vocabulary and better energy levels than pre-Fontan. He is often running around the basement without needing to stop for a break to catch his breath like before. His colour remains good, and his extremities are much warmer than before too, even despite the cold weather! Brian has built an ice rink in our yard this year, and Tyson has discovered that he LOVES skating. He doesn't get to go out as often as his siblings do because Brian or I need to be out there with him, but we try to give him time on Saturdays and at least once during the week to enjoy the ice. During the days we don't have time to go out, he is constantly asking me, "Skates on? Skates on?" He does amazingly well out there too! He wears the "bob skates" that attach to the bottom of his boots, and he glides slowly across the ice, chasing after the puck with a hockey stick in his hands. I always slide around on my knees only inches behind him but if I get too close, he swats my arms away. Of course he wears a helmet (because he's two...and because he's on warfarin) but he did fall on his face today. His feet flipped out from under him and I was right there, but he fell so quickly that I didn't quite catch him in time, and his face smucked against his hockey stick. The helmet protects his head, but not his face! His teeth cut through both his upper and lower lips. So I went running to the house with him in my arms, got a cloth, and washed his mouth up. The bleeding was barely even done and he was asking to go back outside! *sigh* Boys....
I am pretty sure that Tyson is even more obsessed about hockey than our other boys were. He loves to go downstairs to play hockey. He loves to wear the Fisher Price roller skates, but we only let him skate with a skate on one foot. If he asks to wear both roller skates, then he needs to wear a helmet. He is always taking off with one of our winter gloves and using them while he plays hockey. For some reason, it's only one glove that he uses, so we are always searching around the house for our matching glove before we go outside. When he's not playing hockey himself he is looking at his hockey cards in his binder, and if we have to go out somewhere while he's looking at his cards, he insists on taking one or two cards with him in the van. He also really enjoys playing with the NHL figurine we bought him. Everything in the house is either a stick or a puck, and he can make a game of hockey out of anything. The funniest thing is the way he says hockey. He has called it "ee-awe" for as long as he's been talking, and even though he can pronounce "hockey," no matter how many times we correct and reinforce the word, it is still ee-awe to Tyson. He also has a particular "hockey walk." Whenever he has his glove on to play hockey, or has his stick in his hand, he sways back and forth when he walks, and takes long strides as if he's skating and stick-handling. It is so so so cute and Brian and I just love how much of Merrick's goofy personality we see in him when he does this. It helps that he has the same build as Merrick too; a big head, long back, scrawny legs and no bum :)
The nurse practitioner at Sick Kids got a real kick out of him when we were there over the holidays for an appointment. Naturally, we packed along Tyson's mini stick, and he was playing hockey in one of the treatment rooms while we waited for her to come see him. He would pass the puck back and forth and say, "He shoots, he scores!" and then make the sound of a buzzer. The nurse practitioner gave Tyson a hockey Mr. Potato Head, complete with skates, a helmet, a stick and puck, and even a Canadian jersey. Tyson just LOVED it! It really shows how well the staff at Sick Kids know Tyson when they give him a gift like that! Another time he got to chose a toy from a treasure box after he got his chest tube pulled, and he picked a hockey card. His love for hockey was just born in him I guess. Part of the Kottelenberg in him, maybe?
February is Heart Month and February 14th is Congenital Heart Defect Awareness Day. For more information on CHDs, please read the article I wrote for the Orangeville Citizen by clicking on the following link:
February 12th is coming up! We are so excited about the annual Wyatt's Warriors Have a Heart Gala at the Grand Baccus in Toronto. Several friends of ours have also purchased tickets, so we were able to reserve an entire table for the event. All proceeds go to the Labatt Family Heart Centre (Cardiac Critical Care Centre) at Sick Kids and the Jennifer Ashleigh Children's Charity, in support of families affected by CHDs.
So Tyson's next echocardiogram and cardiologist appointment got changed to February 23. If you don't hear from us again until then, it's because we're busy enjoying life (or playing hockey!)
Thanks for checking in on us :)
Mel:)
