Emma Nicole Kubiak
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Emma was born with a rare 6q deletion syndrome. This means that she is missing genetic material from the long arm of her 6th chromosome, and as a result of this she has medical problems such as Tetralogy of Fallot, microcephaly, a G-tube, and developmental delays. In spite of everything, Emma is happy and content. We believe that she is God's special blessing to our family.

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  SUNDAY, OCTOBER 05, 2008 11:48 AM, MDT
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It's been quite a week around here....Donnie got his new cast on Tuesday (see photo section.) He's gotten a lot better with using his crutches, but I'm still struggling with getting him up and down the front stairs of the house to get him to and from school. It's certainly added a bit more of a challenge to our daily life, that's for sure! And Don's been in Ohio for a week with one more to go......

Donnie's orthopedist informed me that his spiral break may still become displaced even with the cast, so it needs to be x-rayed frequently to be sure that none of pieces within the spiral have moved. We'll be going back again this Tuesday.....and I'm hoping and praying that it's right where it should be. (If it moves, he'll need surgery to fix it.) He fell last week as I was trying to get him up the front stairs, and of course, landed on his bad leg. He was actually crying that both hurt, and all I could think was "Please God, NO!" I've heard it said that He doesn't give you more than you can handle, but some days I'm not so sure I believe it.

Emma is doing well, thankfully! :) I don't know if you can tell what she's doing in that welcome photo, but she's been into one of my drawers and found my raspberry chaptick. She will usually bring it to me so she can wear some on her lips, but she's now obviously learned how to get the lid off all by herself and decided that eating it is okay, too! I swear for a kid with feeding difficulties, she'll eat the strangest things!

Her new walker arrived last week! She loves it and has been zipping all over the house with it! Unfortunately, the back wheels don't swivel and she keeps getting them caught on our doorways....but she usually figures it out or whines until one of us can help her.

I've got a short video of her using it:

http://www.onetruemedia.com/shared?p=7104e7db1d2676c16b7d5d&skin_id=701&utm_source=otm&utm_medium=text_url

Yes, Mom & Dad, she has 2 pacis in that video.....some things just make my life a little easier, I'm sure we'll be parting with them by the time she goes to pre-school. :) And the seat....well, the girls have been pushing her around on it, which she thinks is great fun! ha! It's actually for when she's out walking and gets too tired, so she can rest!

This week is full of appointments.....we have a transitional information meeting with Early Intervention, this is about Emma moving to pre-school in January, physical therapy and occupational therapy. I think when Don gets home I deserve a NAP! :)

Thank you for checking in on us....we really appreciate your notes more than you'll ever realize!

Have a great week!

Wendy

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EMAIL AUTHOR
d.kubiak@alaska.com

HOSPITAL INFORMATION
Primary Children's Medical Center
100 N. Medical Dr.
Salt Lake City, UT 84113
United States
8015882233