Busy couple of days.
Hi Everyone,
On Thurs. I decided that I was not going to send a note in the morning because it seemed as thought the last couple I had sent in the morning were a bit of a waste because everything I suggested that we had planned to do in the day had not happened due to Grace's mood swings. Instead on Thurs I thought I'd start leaving notes in the evening so I could just tell you what had taken place in our day. Unfortunately by the time we get Grace down and finish her two rounds of evening meds (around 11ish), I'm too exhausted to string a sentance together and choose to also try to find some sleep, so we are back to leaving notes in the a.m. Thurs. worked out OK with the photographer coming by the house at 10am to take a couple of pictures of Grace sleeping and then she woke up shortly after that and Andrea (the photographer) continued to snap pictures throughout the morning. The experiance was odd for me. On the Wed night I was having a really hard time, exhausted, empty and despirate just to lay my head down and find peace for a few hours. Ian or course insisted I take a sleeping pill and go up to the spare room to rest... which I did. As a result Ian took care of everything to do with the baby for the entire evening... which is far from easy. 2 sets of meds, constantly preparing very specific meals, sometimes Grace will want veggie soup with only corn and pea's and the letter"O"'s in it... nothing else. And as insaine as this sounds we make it for her. Her Dex causes alot of moodiness and constant hunger.... it's not that her belly is emptying faster it's just that her brain is telling her that her belly is empty. As a result she over eats and cries about "G tube ouching" (the tube that goes directly into her belly from outside ther abdemon). It's kinda a crazy circle of events. But anyways... my point and back to the picture storey. So as a result of Ian taking care of the baby Wed night solo and me being ill, when the photographer showed up to take photos of Grace before rising she was in old peguin jammies, I was in a pair of shorts and and old T shirt of Ian's (no bra, hair in matted mess on top of my head... I guess you could call it a "bun") and there we were having professional photo's taken. I rememeber the first time we went for professional photo's as a family, I even ironed the panty's that went under the dress that Grace wore for the photot's. Oh... how things have changed. Grace was not too keen on the photo shoot thing so we packed up headed to the Depaz's (who had only been home from florida for 7 hours, from 3am to 10am) and continued the shoot there. I think Andrea got some good shoots. We then decided we would bring Grace to the water park that she really enjoyed a couple of weeks ago. We thought that we should stop asking her what she wanted to do (since she was saying 'no' to everything) and just doing. If she enjoyed great, if not we would head home. The water park is in Niagra so we headed out and ended up turning around in Grimsby because Grace said she wanted to go home and see Willie (my mom's dog). On Friday I was nervous about Dora coming because of how moody Grace is but the Depaz kids came over and they all loved it (although Nicky thought her hair was big and scarry and it took her a few minutes to warm up to her). It was really a wonderful afternoon... Thanks so much Gerry, Fiona, friends and Canada's Wonderland who were responsible for making this happen. Now to Xmas yesterday. Many friends and family dropped off gifts... it was truely overwhelmening. Again Grace wanted her friends involved so Friday night the Depaz kids came over and they all hung stockings on our staircase. We don't have a fireplace but Mo explained to all the little ones that that was OK because Santa has a majic key to get into everyone's house who does not have a chimney. We then carried our lite but undecorated Xmas tree up from the basement... which we had plans on decorating but did not due to exhaustion and read Grace a Xmas story before we went to bed. At first Grace and Nicky were nervous when Santa showed up but then warmed up and ended up holaing to the song "Christmas Island" with him... we got a great video. The kids unwrapped gifts for at least an hour then the other "kids" (meaning the husbands/dads) headed out to the driveway to make the movie snow that Grace's godmom Sara had some how got her hands on. Within 1/2 hour the kids were ridding Thomas the Train around a figure 8 track in a winter wonderland. Grace wasn't into the snow and train but for what she didn't get out of it, the neighborhood kids did so again a good decision. Grace and Nicky opted to play in the bubble bath while the other kids played on the train and in the snow. Jen and I went over to get the turkey (cooking at her place) to find it was still frozen in the middle after being in the oven for 5 hours. As a result our Xmas dinner was pizza (leftover from dora lunch) yummy chicken & veggies (chuck droped off for fri. dinner) faihitas (les dropped of for Sat dinner) sheppards pie (lisa made for Sun dinner) mashed potatos, buns and lots of sweets... perfect really. Thank you to everyone for contibuting to our Christmas. We will charish the memories forever. Well I've taken too much time away from my baby... sorry for being out of touch. I'll try to send a quick not every morning.
Love,
Les
On Thurs. I decided that I was not going to send a note in the morning because it seemed as thought the last couple I had sent in the morning were a bit of a waste because everything I suggested that we had planned to do in the day had not happened due to Grace's mood swings. Instead on Thurs I thought I'd start leaving notes in the evening so I could just tell you what had taken place in our day. Unfortunately by the time we get Grace down and finish her two rounds of evening meds (around 11ish), I'm too exhausted to string a sentance together and choose to also try to find some sleep, so we are back to leaving notes in the a.m. Thurs. worked out OK with the photographer coming by the house at 10am to take a couple of pictures of Grace sleeping and then she woke up shortly after that and Andrea (the photographer) continued to snap pictures throughout the morning. The experiance was odd for me. On the Wed night I was having a really hard time, exhausted, empty and despirate just to lay my head down and find peace for a few hours. Ian or course insisted I take a sleeping pill and go up to the spare room to rest... which I did. As a result Ian took care of everything to do with the baby for the entire evening... which is far from easy. 2 sets of meds, constantly preparing very specific meals, sometimes Grace will want veggie soup with only corn and pea's and the letter"O"'s in it... nothing else. And as insaine as this sounds we make it for her. Her Dex causes alot of moodiness and constant hunger.... it's not that her belly is emptying faster it's just that her brain is telling her that her belly is empty. As a result she over eats and cries about "G tube ouching" (the tube that goes directly into her belly from outside ther abdemon). It's kinda a crazy circle of events. But anyways... my point and back to the picture storey. So as a result of Ian taking care of the baby Wed night solo and me being ill, when the photographer showed up to take photos of Grace before rising she was in old peguin jammies, I was in a pair of shorts and and old T shirt of Ian's (no bra, hair in matted mess on top of my head... I guess you could call it a "bun") and there we were having professional photo's taken. I rememeber the first time we went for professional photo's as a family, I even ironed the panty's that went under the dress that Grace wore for the photot's. Oh... how things have changed. Grace was not too keen on the photo shoot thing so we packed up headed to the Depaz's (who had only been home from florida for 7 hours, from 3am to 10am) and continued the shoot there. I think Andrea got some good shoots. We then decided we would bring Grace to the water park that she really enjoyed a couple of weeks ago. We thought that we should stop asking her what she wanted to do (since she was saying 'no' to everything) and just doing. If she enjoyed great, if not we would head home. The water park is in Niagra so we headed out and ended up turning around in Grimsby because Grace said she wanted to go home and see Willie (my mom's dog). On Friday I was nervous about Dora coming because of how moody Grace is but the Depaz kids came over and they all loved it (although Nicky thought her hair was big and scarry and it took her a few minutes to warm up to her). It was really a wonderful afternoon... Thanks so much Gerry, Fiona, friends and Canada's Wonderland who were responsible for making this happen. Now to Xmas yesterday. Many friends and family dropped off gifts... it was truely overwhelmening. Again Grace wanted her friends involved so Friday night the Depaz kids came over and they all hung stockings on our staircase. We don't have a fireplace but Mo explained to all the little ones that that was OK because Santa has a majic key to get into everyone's house who does not have a chimney. We then carried our lite but undecorated Xmas tree up from the basement... which we had plans on decorating but did not due to exhaustion and read Grace a Xmas story before we went to bed. At first Grace and Nicky were nervous when Santa showed up but then warmed up and ended up holaing to the song "Christmas Island" with him... we got a great video. The kids unwrapped gifts for at least an hour then the other "kids" (meaning the husbands/dads) headed out to the driveway to make the movie snow that Grace's godmom Sara had some how got her hands on. Within 1/2 hour the kids were ridding Thomas the Train around a figure 8 track in a winter wonderland. Grace wasn't into the snow and train but for what she didn't get out of it, the neighborhood kids did so again a good decision. Grace and Nicky opted to play in the bubble bath while the other kids played on the train and in the snow. Jen and I went over to get the turkey (cooking at her place) to find it was still frozen in the middle after being in the oven for 5 hours. As a result our Xmas dinner was pizza (leftover from dora lunch) yummy chicken & veggies (chuck droped off for fri. dinner) faihitas (les dropped of for Sat dinner) sheppards pie (lisa made for Sun dinner) mashed potatos, buns and lots of sweets... perfect really. Thank you to everyone for contibuting to our Christmas. We will charish the memories forever. Well I've taken too much time away from my baby... sorry for being out of touch. I'll try to send a quick not every morning.
Love,
Les
posted by Lesley at 11:34 a.m.
1 Comments:
Hello. I just started reading your story at the referral of a friend. I first want to say that I am so happy that you had such a wonderful Christmas!! I have been thinking about you since you mentioned doing it & hoping & praying that all went well. And it did!! You are such a strong, beautiful family & your Miss Grace is an amazing little girl. I have a 2 1/2 yr old son & I have shown him pics of Grace & started telling him Grace's story. He's only 2 1/2 so you know how it goes with their level of understanding!! But, I know he understands cuz he always sweetly smiles whenever I mention Grace. You & your family have been an inspiration to me. You will always be in my thoughts & prayers. Thank you.
Terri
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