Archive for December, 2009

Things are going well in the Krajewski House and we’ve had some great holiday celebrations with family and friends. I am praying that good health will continue with our family. I’m also praying that our friends who are sick will be better soon. Too many of our sma (and non-sma) friends are in the hospital right now or under the weather. Ally is scheduled to be admitted to Childrens Memorial next week, January 6th-9th, to switch to a stronger vent/bi-pap breathing machine to keep her healthy. She is well now, but when she gets sick, she very quickly collapses her left lung and we fear if we wait until Spring, she may have a sick hospitalization, another intubation or worse. Ally will switch to the new Trilogy vent/bi-pap from Respironics and will still use the same bi-pap masks and only use her breathing machine when sleeping, if a break is needed, or full time when she is sick. Pros are that the Trilogy has stronger pressures, an internal battery, and an external heater/humidifier will be approved with it. Of course, I am VERY, VERY nervous about having Ally in the hospital with all the winter germs and just the usual stress of hospitals, but I have been working with the hospital to plan things the best we can to make it a smooth transition for Ally and hopefully have nurses and respiratory therapists that know her well already. I will be there with her too. Childrens Memorial is a great hospital and I appreciate all they have done to help with Ally and learn about SMA care for her and others. This is another step in the right direction, just still a bit scary. The hospital is completely full right now, so our dates are tentative since it is a scheduled admission and sick kids must come first. I hope it happens, to get it done and over, but will update when I know more. Prayers for Ally during this transition and also for others sick right now is greatly appreciated.

Now to the good stuff… We have been very busy this holiday season and have been taking lots of pictures and short videos. I just uploaded a TON of pictures to my picasa website. I’m going to try to do links and/or slideshows to the newest albums here, but not sure how well it will work. You can definitley go to our picasa website http://picasaweb.google.com/tina61775 to see all of our albums too. I learned that photos can be purchased through Walgreens and several other places right from our albums on picasa. You can also see the titles/names of people in the photos if you click on the “more info” button on the right side of the screen. Not sure why the titles don’t transfer below the picture. You will also notice that several videos are mixed within the pictures.

Hope you enjoy and be sure to let us know you visited by commenting below or on our picasa site. We LOVE to hear from family and friends!!!!

**Click on the album covers below to go to the picassa album**
(Can’t figure out how to do a slideshow on here, can anyone help? Nate?)

Ally's Dream Deck with whirlpool and Make a Wish party
2009-12-30 Billy's family xmas, movies, music
2009-12-25 Horizon Santa, music, bath, Christmas Day
2009-12-20 Xmas with my family
2009-12-18 PT, homebound, blanket set, Make a Wish, concert
2009-12-06 art, cheer party, Santa, Billy, MDA Santa
2009-11-28 powerchair, whirlpool, Thanksgiving, school, family

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We had a great time celebrating with my parents, my sisters and their families on December 19th. This was the first of several holiday parties.

Check out the video …

Pictures can be seen at …

2009-12-20 Xmas with my family

Let us know you visited by leaving a comment below.

Happy Holidays to All!

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2009-12-06 MDA Santa Crew

Wanted to share some HAPPY Holiday pictures from the last week or sooo…

Ally’s been having a wonderful time with her Art teacher Joan painting some holiday crafts and gifts.  Melissa and I visited Santa at the mall (since I’ve spent so much time bargain shopping with our last income tax check).  I was able to go to Kristyn’s end of the season Cheerleading hotel party and pizza dinner.  Best of all, we went to the MDA Holiday Party and took some amazing pictures with Santa and his crew.  Mrs. Clause and one of the elves remembered Ally from last year and spend some special quality time with her.  Ally had her dynavox computer with her and was saying “Hi”, “My name is Ally”, and “Merry Christmas, ho! ho! ho!”  Melissa had some fun building a wooden schoolbus and decorating cookies.  Not sure how much more we will be able to go out of the house this winter, so I’m very glad we had a wonderful time. 

Friday, Ally will be going to a new pulmonologist at Children’s Memorial.  We are excited to formally meet Dr. Lestrud and work on maybe switching Ally to the Trilogy vent/bi-pap or something that can offer her more support to avoid her left lung collapsing so easily when she gets sick.  So far, I am VERY impressed with his nurse practioner, Jenny.  Hopefully there won’t be too much snow on the ground we when venture out.

Let me know what you think of our pics by making a comment below or sending an email. **Click on the link or album cover to see all the pictures**

2009-12-06 art, cheer party, Santa, Billy, MDA Santa

Hope everyone is staying well!

Tina, Ally and Family

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