Wednesday, April 7, 2010

Constantly in flux

Well the update on Ally has changed yet again. I guess we are learning all about being flexible this week. Lots of scheduling, trips to the blood lab, and phone calls have ensued. After taking her in today, I found out that her platelets have still not gotten to the threshold of 75. They went from 57 to 64. Not quite ready. (normal is about 150) This explains why she bled through the band aid so quickly after the finger stick. We wanted to go Friday, but turns out that they are too busy up in the almost home unit where they do the spinal taps. Bummer. They are also too busy on Monday. Who knows, there must be a whole lot of spinal tap action going on. They only allow 3 per day. So I guess we will wait until Tuesday. This has its pros and cons...good weekend, but this now pushes her intense treatment on into June and past the one year point. I just wanted to be done with it by May 27th, the one year anniversary. It was only supposed to take 11 months, but the delays end up eating up valuable time. It also means our "day" for the next eight weeks is Tuesday...which we wanted Friday because that helps us out in getting childcare for the other two kiddlings. ho hum We will deal with it amongst everything else.

Secondly, for months now I have been wanting to share a special song with you. I keep wondering how to share it, but I finally figured out how to do it. It is Allison's "Song of Love" There is an organization called Songs of Love that write and record a song for children with a life threatening illness. (again, I hate those words) I sent them a little bio on Ally and they included everything in the song from Bobo (her stuffed animal) to her siblings and dogs to her best friends names. They talk about her liking soccer and swimming and Hannah Montana too. It is kinda cute. Soooooooooooo.....if you watch this little video you get a two for one. Our Easter pictures from Junction City and Fox Hill and the song playing in the background. I just wanted everybody to hear how cool the song is. The kids love it and we are quite grateful to the organization for doing this for our daughter. They call it the "medicine of music.
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And one more little thing. This is a video of our girl Ally doing the egg hunt this year. I had to publish the clip, not super exciting, but I wanted to have it for my Gramma Ruth. She missed the hunt this year because she wasn't feeling very good. So here you go Gramma....your great-grandkids in action. (press the side facing triangle...)

video

7 comments:

  1. very cute song :). Can you guess which picture is my favorite??? #7 of course.

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  2. Terri Barnett ShumakerApril 8, 2010 at 7:34 AM

    Beautiful song and pictures. I love the one with Great Grampa Harry. So glad that you got to enjoy the beautiful weather with family.
    Sending lots of prayers and love your way.

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  3. That is a very cool organization! Love the song!

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  4. I have Julia's song on my iPod. I love Ally's. I bet it is a BIG hit at your house. Songs of Love is a great organization. I hope for you guys to get back on track and on with treatment.

    Emily Mangual

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  5. Ha ha, love that song. Allison, she loves to swim swim swim. Cool stuff!

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  6. The song is awesome! loved seeing you all having fun and hearing your laugh on the video.

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