Well, we are trying to send Sam to PT camp next summer. I have filled out the application and we will see. It is spendy, but it would be worth it if we qualify. There is a hospital that runs an intensive PT for kids with CP and the results for lots of kids is tremendous. THere is a board on Yahoo for parents who send their kids, and to read their experiences is amazing. There are kids who sound lots worse off than Sam who really make great strides...and even eventually walk independently. I think she can do it. I hope we can start going this year. It might take time, but she will get there, I just know it. It is exciting to think about.
her speech therapist came today, and was impressed with her improvements. :)
We are working hard to get some kind of augmentative communication device for her to take to school. It doesn't mean we won't work on talking, but we want her to be able to make her wants and needs known in school. So we will see how that goes.
I still can't believe in Feb. she will be in school. Wild.
She is still doing great. I am so impressed with her.
That is all for now!
Best,
Lisa
Friday, November 14, 2008
Tuesday, November 11, 2008
Terrified (She is fine...no worries)
Well, I will start by saying that Sam is doing great. She really is. It is just her mom who is not!
Last night after she went to bed, seemingly easily, she started to fuss. I went to see what was bothering her. She hadn't pooped all day, in part, I am sure, because she refused to take her laxative. Anyway, she was making sounds like she was trying to go, so I thought maybe she had some success and needed a new diaper. Nope. I picked her up and was walking her around. She started screaming bloody murder and could not be consoled. I asked her if she needed to poop and she said (i.s. signed) "yes." So I thought I woudl give her a suppository to help it along...we aren't allowed to take constipation lightly. So I was getting her set up on the couch with her show to give her the suppository as she screamed and screamed. I was freaking out that something was really wrong. I gave her the suppository and she started to go immediately and then she started vomiting immediately, as well. I was out of my mind scared, as you might imagine. I was so worried that something was wrong, while at the same time couldn't imagine that anything was wrong. SO I called my parents (Fraser was at work) and had them come to help me I was so scared. By the time they got to our house (12 minutes) she was cleaned up, smiling and laughing and watching her Caillou. I am guessing that the pooping made her puke, and that is all it was. She hasn't been fussy at all, has continued to be happy, eating well, playing well, etc. THere is no indication of anything being wrong. Yet, still, I freak out.
So now she is in bed. Went to bed easily tonight too. And I am terrified. I am sitting here with the monitor on really loud, listening to every sound. So far it has been talking and lots of yawning, and of course, as she always does, scratching the bumper of the crib. No signs of trouble (she did poop today, and she did take her laxative!!). But I still can't relax. How long will it take to get over the trauma? How long until I can rest? How long before I can feel ok even when something happens? I know it will take time...but how long? It is so scary for me.
She is such a good girl. I am so impressed with her. I am so proud of her. I love to be her mom. I still ache when I see other kids, still want to sit and talk with her. Wish I knew what she was thinking, because I know she is thinking a lot. I can see it all going on behind those eyes. I want her to tell me. I ache for her to say "mom" I yearn to see her walk and run and climb. I want these things so much for her. Mostly I want her to be happy, of course, and I know she can be happy...she is happy now. I just want it all for her.
I have a wonderful therapist. She reminds me that the difference between me and most of the rest of the world is that everyone else gets to take for granted the health of their child. No one thinks it will happen to them. Yet everyone is vulnerable to things happening, to having life-changing things happen to them. We are just different because we know it CAN happen. It HAS happened. We do not have the luxury of thinking we are safe from that kind of tragedy. And it changes the way we live our lives, the way we see the world. We have been stripped by some luxuries that most take for granted. And although it can make things much more difficult (like filled with anxiety and fear) it can also lead to the most incredible joy.
So that is my blathering on tonight. I love my girl, like all you parents out there love your children. Just because she doesn't move like other kids, or talk yet, or do the things a typical 3 year old does, doesn't mean I love her less. Because I don't have the luxury of thinking that her life is a foregone conclusion. She has fought for her life, every step of the way. And I was there with her, cheering her on.
Love to you all.
Lisa
Last night after she went to bed, seemingly easily, she started to fuss. I went to see what was bothering her. She hadn't pooped all day, in part, I am sure, because she refused to take her laxative. Anyway, she was making sounds like she was trying to go, so I thought maybe she had some success and needed a new diaper. Nope. I picked her up and was walking her around. She started screaming bloody murder and could not be consoled. I asked her if she needed to poop and she said (i.s. signed) "yes." So I thought I woudl give her a suppository to help it along...we aren't allowed to take constipation lightly. So I was getting her set up on the couch with her show to give her the suppository as she screamed and screamed. I was freaking out that something was really wrong. I gave her the suppository and she started to go immediately and then she started vomiting immediately, as well. I was out of my mind scared, as you might imagine. I was so worried that something was wrong, while at the same time couldn't imagine that anything was wrong. SO I called my parents (Fraser was at work) and had them come to help me I was so scared. By the time they got to our house (12 minutes) she was cleaned up, smiling and laughing and watching her Caillou. I am guessing that the pooping made her puke, and that is all it was. She hasn't been fussy at all, has continued to be happy, eating well, playing well, etc. THere is no indication of anything being wrong. Yet, still, I freak out.
So now she is in bed. Went to bed easily tonight too. And I am terrified. I am sitting here with the monitor on really loud, listening to every sound. So far it has been talking and lots of yawning, and of course, as she always does, scratching the bumper of the crib. No signs of trouble (she did poop today, and she did take her laxative!!). But I still can't relax. How long will it take to get over the trauma? How long until I can rest? How long before I can feel ok even when something happens? I know it will take time...but how long? It is so scary for me.
She is such a good girl. I am so impressed with her. I am so proud of her. I love to be her mom. I still ache when I see other kids, still want to sit and talk with her. Wish I knew what she was thinking, because I know she is thinking a lot. I can see it all going on behind those eyes. I want her to tell me. I ache for her to say "mom" I yearn to see her walk and run and climb. I want these things so much for her. Mostly I want her to be happy, of course, and I know she can be happy...she is happy now. I just want it all for her.
I have a wonderful therapist. She reminds me that the difference between me and most of the rest of the world is that everyone else gets to take for granted the health of their child. No one thinks it will happen to them. Yet everyone is vulnerable to things happening, to having life-changing things happen to them. We are just different because we know it CAN happen. It HAS happened. We do not have the luxury of thinking we are safe from that kind of tragedy. And it changes the way we live our lives, the way we see the world. We have been stripped by some luxuries that most take for granted. And although it can make things much more difficult (like filled with anxiety and fear) it can also lead to the most incredible joy.
So that is my blathering on tonight. I love my girl, like all you parents out there love your children. Just because she doesn't move like other kids, or talk yet, or do the things a typical 3 year old does, doesn't mean I love her less. Because I don't have the luxury of thinking that her life is a foregone conclusion. She has fought for her life, every step of the way. And I was there with her, cheering her on.
Love to you all.
Lisa
Monday, November 10, 2008
Wow!
Well, Sam is back to her old self! Well, almost. She is doing great. Satrday evening I was home with her and wasn't sure what to do so we decided to get in her gait trainer. She ahsn't taken any independent steps since we have been home, but she has been interested in going in her gait trainer, so we got in there, and she took about 8 steps before getting really tired and cranky. That is a huge step. She is getting it back...
Then we went to the floor, and she started rolling. That aws great to see. She also got herself up on all fours, mostly by herself. Her amrs are stilll weak, so I needed to help support her weight but seh got up on all fours and started crawling! All I was doing was helping with the weight-bearing. It was amazing. She was so thrilled. Then she got tired, went back down on the floor and started rolling some more. I tell you, this girl wants to GO.
It is so nice to see her moving around more. It has been a really long 4 months of surgeries and hospitalization, feer and anxiety of what she would lose in the mean time and how much she could get back. This is so heartening to see. She was also doing other things that were wow-ing me, like standing at the coffee table, supporting herself with her RIGHT hand/arm (her weaker side) and reading books (well turning pages). I am just amazed and proud of her.
So, she will continue to be Sam and amaze and surprise us all the time, I guess. Her eating is going well too, really packing it in, and getting back to eating more table food, rather than pureed food. That is a nice treat.
I guess we will see what comes next! It is so good to be home and just to be able to enjoy her. Other parts of life are hard, but we are getting there.
All the best.
Lisa
Then we went to the floor, and she started rolling. That aws great to see. She also got herself up on all fours, mostly by herself. Her amrs are stilll weak, so I needed to help support her weight but seh got up on all fours and started crawling! All I was doing was helping with the weight-bearing. It was amazing. She was so thrilled. Then she got tired, went back down on the floor and started rolling some more. I tell you, this girl wants to GO.
It is so nice to see her moving around more. It has been a really long 4 months of surgeries and hospitalization, feer and anxiety of what she would lose in the mean time and how much she could get back. This is so heartening to see. She was also doing other things that were wow-ing me, like standing at the coffee table, supporting herself with her RIGHT hand/arm (her weaker side) and reading books (well turning pages). I am just amazed and proud of her.
So, she will continue to be Sam and amaze and surprise us all the time, I guess. Her eating is going well too, really packing it in, and getting back to eating more table food, rather than pureed food. That is a nice treat.
I guess we will see what comes next! It is so good to be home and just to be able to enjoy her. Other parts of life are hard, but we are getting there.
All the best.
Lisa
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