Wednesday, February 27, 2008
Tuesday, February 26, 2008
Well, it sounds like Payton will start receiving her OT soon. This is the therapy she is in most need of so I'm very excited about this. It'll be another home visit, but not too much longer and she'll start receiving her therapy at school again (in the fall).
Monday, February 25, 2008
On the way home, Payton screamed and cried for about two and half hours of the trip....once again needing to get all the emotions out from the weekend. That makes a car ride extremely stressful. Bob and I realized why we hadn't made that trip in a while! It's so tough on Payton - she really has to come home and be 'de-sensitized'. It's strange - it's not while we're there that the meltdowns begin, it's usually when everyone has left or when things settle down that she lets her guard down and just lets it all go. Payton spent most of her evening on a huge emotional roller coaster ride - and it usually takes her about a week to settle back in, so I'm hoping by the weekend she'll be back to herself. Bob and I just sat there on the sofa last night in a daze.....it's tough seeing your child unable to handle changes in routine.....I'm very hopeful as she gets older traveling will be so much easier. (Koen's got to be hoping that too!!). And-I'm extremely thankful that my mom gives me a shoulder to cry on when Bob and I feel emotionally exhausted as well.
I once again felt my heart drop into my stomach when checking everyone's blogs last night. I was devastated to see that Michaela's MRI had shown a brain tumor. I wish we all lived close so we could be there for each other in person. Please continue to keep Abi, Ava Jewel, Ava, Blake, and Michaela in your prayers.
Thursday, February 21, 2008
Noel recently put a poem on her blog that describes so well how I feel:
Someone I love relies on me in ways you will never understand.
Someone I love endures pain and challenges that break my heart and renew my spirit at the same time.
Someone I love is unable to advocate for themselves for things that most of us take for granted.
Someone I love will never have the opportunities that every child should have.
Someone I love will need unconditional love and support after I am gone-this frightens me to the core.
Someone I love encounters pity, stereotyping responses, and prejudice at every turn, because they look, act, and/or learn differently than others.
Someone I love has needs that require me to allow "outsiders" to have power and input in areas that should be mine alone to meet.
Someone I love will continue to look to me for everything in life long after other children are able to assume a place as part of the world.
Someone I love has needs that require more time and energy than I have to give.
Someone I love has needs that mean I am not able to meet basic needs of my own.
Someone I love has needs that have become the driving force behind major decisions my family makes.
Someone I love has changed me in ways I will never be able to describe.
Someone I love has taught me about love and about the really important things in life. . . .
Please keep Ava, Abi, Blake, and Ava Jewel in your prayers. Surgeries and illness have been taking a toll on these families and they sure could use the extra prayers.
Tuesday, February 19, 2008
Monday, February 18, 2008
Wednesday, February 13, 2008
Monday, February 11, 2008
Yesterday morning started off with Payton popping up at 5am. She wanted to see her daddy so I told her she could run in the other room and see him. It wasn't such a good idea, our alarm goes off at 5am and it scared her to death. Bob got the alarm shut off and came in to check on Payton since she was so upset. He thought she was cold because she was shaking so bad, but it really just shook her up. So far, we haven't found a clock that doesn't scare her to death, but we'll just keep trying. Needless to say, all I heard about yesterday was the clock. I told Bob if I heard "no more clocky" one more time I was going to scream! She basically went from "no noise" to "bad clock" to "no more clocky" all day. It's days like that when I'm thankful we have a diagnosis because I seriously think I would have trouble figuring out why she couldn't get past the whole clock issue if I didn't know she had ws. At the end of the day, I just had to laugh at it. Before bed she watched Bob carry it out of the house so she would sleep better. Today, I haven't heard about it but maybe 50 times :)
Oops, spoke too soon. Payton was in the other room asleep and I heard her call out for me. I went in there and she said "no more clocky". I said "Remember, daddy took it outside so we don't have to worry about it." She sat up and said "I LUB (love) clocks!" with a huge grin. She does this when she's trying to talk herself into liking it. I swear, I love that little girl to pieces.
Monday, February 4, 2008
I tried washing it a couple of times and it still looked greasy greasy but we were heading to my niece's first birthday party so I thought I'd see if anyone had any suggestions on how to get all the Vicks out of her hair. Both of my sisters married farmers so they had tons of ideas. Shawna put cornstarch in her hair (I'm not sure why, but they use this on cattle....so they tried to see if it would work on Payton - and it did look a lot better! My mom also suggested using Dawn, so we washed her hair with that and it seemed to help too). Here's Payton with the cornstarch in her hair - when my 2yr old niece Laney saw her she told Payton she looked BEAUTIFUL! Payton had a ball with this....although she is still a little 'greasy' looking.
This is my niece, Ellie, who had her 1st birthday party Saturday evening. She is such a doll and so much fun. I think that was actually the first birthday party she and Koen both had been to - and as you can see, they seemed to enjoy themselves.
I don't have any pics of Ellie diving into her cake - she didn't care for it too much-but here's Koen smashing it into his mouth. He, ofcourse, loved it.
Friday, February 1, 2008
Last night seemed to be about the same as the rest of the week. My father called and asked if we'd like to come out to dinner and I thought it would be a nice change for Payton - she could see a couple of her cousins and get to play with them a bit. My mom was aware of the week we had thus far and was hopeful being in a different place would help her have a better evening. Unfortunately she seemed to wreck havoc on everyone at her grandma's house as well. It really is hard not to feel sorry for her. She threw things, hit basically everyone there (if you walked by her or if she walked by you, you were apt to get swung at), and threw her fits. Then, as usual, wet her pants. Looking at her, I see a child frustrated and anxious. Anymore, I come to work and sit and worry about how she's doing. If I wasn't the one who carried the insurance I would quit my job and stay at home. The guilt I feel for not doing it is almost unbearable - but the fact is, with all medical problems associated with ws we have to have insurance for her or we'd be flat broke.
For any of my family and friends interested in reading Nancy's post, just click here. Thank you, Nancy, for being so open and honest in your post.