Keeping busy
Hi Everyone,
Since receiving our devastating news on Tues. we have been doing our best to fill every moment of Grace's day (and sometimes night since some of the maintenance drugs that she is currently on causes insomnia (& mood swings... what a combo in a 2 year old)) with all the joy and love we can scrap together. Tues and Wed. she has enjoyed dinner, bubble baths and bike rides with her best friends Mo, Jules, Nicky and baby Zen. The hospitality that the Depaz's have extended to us has given us peace in a time of chaos although I'm now afraid that Ian's going to get too used to Jen's good cooking and no longer be as impressed with my as of late efforts in the kitchen. Thurs. morning we headed to Niagara to visit the whales at Marinland and then checked in to the Americanna indoor water park. Grace LOVED the wave pool and triple slide that allowed Mama, Dada and baby to go down together holding hands. We spent about $20 trying to win enough tickets from an arcade game to win Grace a Micky Mouse ring that she spotted in the arcades show case. I'm sure daddy could have own it with $5 but Grace has entered the stage of wanting to do everything herself so Ian and I sat back as she fed coin after coin into the baby Godzilla ball game and pounded the button feverishly in hopes of getting the balls in baby Godzilla's mouth. We then brought her to see the lights on the falls which she wasn't that impressed with since she's never seen a waterfall not illuminated so in her world that is just what they must look like. She told Ian and I that it was a lot of "wawa" (water) and whales must live there for sure. We capped the night off with ice cream and an overpriced in room movie about lions that she watched for 5 min. before dosing off. The next morning after Grace decided to order rice for breakfast, we headed back to the waterpark before having to leave at 12:30 to make our 2:30 apt. at Sick Kids to get clearance for our trip to Disney. Grace enjoyed a lunch of honey dipped timbits and apple juice as Ian and I cringed in the front seat of the car as we hoped that she was not going to barf since she ate them quicker than we could keep track... she didn't! Our visit at the hospital was bitter sweet. After receiving medical clearance to travel with Grace next week for 5 days only we got the ball rolling on booking things. Flights were hard to get so we had to change our travel dates from Mon-Fri to Tues.-Sat. (with hospital clearance of course) and we could not get into the same resort as the Depaz's but got in the one next door. The hospital was able to pay for our 3 day park hopper passes for 3 of the 5 of us so that helped financially. After the good news about being given medical clearance to travel we had my parents take the baby home (no need for her to spend one extra min. in the hospital) and Ian and I stayed behind to meet with the palliative care team. We discussed what organ/tissue from Grace we were able to donate... looks like it may just be her eyes due to the amount of drugs involved in her treatment which have deteriorated the balance of her organs, but Ian and I feel good about donating and will do all we can in this area. When they started discussing guildlines for resuscitation we decided to put that on the back burner until returning from our self created "wish" trip. Last night Grace decided that she wanted to take a bath at 10pm, which lasted until 12 midnight at which point we made popcorn (which she insisted on eating piece by piece with her Dora spoon) and read stories until 1:3am. This is when we find it the hardest. When Grace's meds are giving her boosts of energy when Ian and I are running out of gas. But we make it happen the best we can. She woke up just after 8 and has been ready to "play, play, play" ever since. He daddy has her out for a bike ride right now while I fit in my first shower in a couple days. We are then going to take her for her first train ride (Go train out of Oakville and into Union... if she lasts that long). We may stay at the delta Chelsea tonight and enjoy there pool and children's play area. I'm finding it easier not being at home because when I'm here I'm doing laundry, washing dishes and doing house stuff just because I'm anxious which takes time away from Grace. I found when we were away the last couple of days I could relax more. Thank God for kind words from wonderful friends that give us strength to continue. I know it must be hard for those of you looking to help out to know what to do or what to say. I don't even know what I need done or what I need to hear. This situation is just so impossible on so many different levels. But again thank god for the kind words, thoughts and prayers of those who are special to us... you give us strength.
Gotta fit that shower in.
Les
P.S. upcoming activities: Return from Disney on the 5th. Aug. 10th we have a professional photographer coming to follow us for the day to do a photo documentary of "a day in the life of Grace". On Aug. 12 we are having Christmas for Grace. We are lining the house in lights, putting up a tree, cooking a turkey dinner, and getting Santa to visit. Christmas doesn't have to be in December right?? We will be visiting Dora at wonderland, going to the great wolf lodge water park and having molds done of her hands and feet while painting pottery... I'm just in the processes of booking this now. BIG THANKS TO CAROLINE used connections to arrange(what I hear is the impossible) for Grace....breakfast with Cinderella at Disney. If anyone has heard of another incredible experiences for 2 year olds.... let us know (Email is best).
Take good care.
Love,
Les
Since receiving our devastating news on Tues. we have been doing our best to fill every moment of Grace's day (and sometimes night since some of the maintenance drugs that she is currently on causes insomnia (& mood swings... what a combo in a 2 year old)) with all the joy and love we can scrap together. Tues and Wed. she has enjoyed dinner, bubble baths and bike rides with her best friends Mo, Jules, Nicky and baby Zen. The hospitality that the Depaz's have extended to us has given us peace in a time of chaos although I'm now afraid that Ian's going to get too used to Jen's good cooking and no longer be as impressed with my as of late efforts in the kitchen. Thurs. morning we headed to Niagara to visit the whales at Marinland and then checked in to the Americanna indoor water park. Grace LOVED the wave pool and triple slide that allowed Mama, Dada and baby to go down together holding hands. We spent about $20 trying to win enough tickets from an arcade game to win Grace a Micky Mouse ring that she spotted in the arcades show case. I'm sure daddy could have own it with $5 but Grace has entered the stage of wanting to do everything herself so Ian and I sat back as she fed coin after coin into the baby Godzilla ball game and pounded the button feverishly in hopes of getting the balls in baby Godzilla's mouth. We then brought her to see the lights on the falls which she wasn't that impressed with since she's never seen a waterfall not illuminated so in her world that is just what they must look like. She told Ian and I that it was a lot of "wawa" (water) and whales must live there for sure. We capped the night off with ice cream and an overpriced in room movie about lions that she watched for 5 min. before dosing off. The next morning after Grace decided to order rice for breakfast, we headed back to the waterpark before having to leave at 12:30 to make our 2:30 apt. at Sick Kids to get clearance for our trip to Disney. Grace enjoyed a lunch of honey dipped timbits and apple juice as Ian and I cringed in the front seat of the car as we hoped that she was not going to barf since she ate them quicker than we could keep track... she didn't! Our visit at the hospital was bitter sweet. After receiving medical clearance to travel with Grace next week for 5 days only we got the ball rolling on booking things. Flights were hard to get so we had to change our travel dates from Mon-Fri to Tues.-Sat. (with hospital clearance of course) and we could not get into the same resort as the Depaz's but got in the one next door. The hospital was able to pay for our 3 day park hopper passes for 3 of the 5 of us so that helped financially. After the good news about being given medical clearance to travel we had my parents take the baby home (no need for her to spend one extra min. in the hospital) and Ian and I stayed behind to meet with the palliative care team. We discussed what organ/tissue from Grace we were able to donate... looks like it may just be her eyes due to the amount of drugs involved in her treatment which have deteriorated the balance of her organs, but Ian and I feel good about donating and will do all we can in this area. When they started discussing guildlines for resuscitation we decided to put that on the back burner until returning from our self created "wish" trip. Last night Grace decided that she wanted to take a bath at 10pm, which lasted until 12 midnight at which point we made popcorn (which she insisted on eating piece by piece with her Dora spoon) and read stories until 1:3am. This is when we find it the hardest. When Grace's meds are giving her boosts of energy when Ian and I are running out of gas. But we make it happen the best we can. She woke up just after 8 and has been ready to "play, play, play" ever since. He daddy has her out for a bike ride right now while I fit in my first shower in a couple days. We are then going to take her for her first train ride (Go train out of Oakville and into Union... if she lasts that long). We may stay at the delta Chelsea tonight and enjoy there pool and children's play area. I'm finding it easier not being at home because when I'm here I'm doing laundry, washing dishes and doing house stuff just because I'm anxious which takes time away from Grace. I found when we were away the last couple of days I could relax more. Thank God for kind words from wonderful friends that give us strength to continue. I know it must be hard for those of you looking to help out to know what to do or what to say. I don't even know what I need done or what I need to hear. This situation is just so impossible on so many different levels. But again thank god for the kind words, thoughts and prayers of those who are special to us... you give us strength.
Gotta fit that shower in.
Les
P.S. upcoming activities: Return from Disney on the 5th. Aug. 10th we have a professional photographer coming to follow us for the day to do a photo documentary of "a day in the life of Grace". On Aug. 12 we are having Christmas for Grace. We are lining the house in lights, putting up a tree, cooking a turkey dinner, and getting Santa to visit. Christmas doesn't have to be in December right?? We will be visiting Dora at wonderland, going to the great wolf lodge water park and having molds done of her hands and feet while painting pottery... I'm just in the processes of booking this now. BIG THANKS TO CAROLINE used connections to arrange(what I hear is the impossible) for Grace....breakfast with Cinderella at Disney. If anyone has heard of another incredible experiences for 2 year olds.... let us know (Email is best).
Take good care.
Love,
Les
posted by Lesley at 12:46 p.m.
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