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Archive for September, 2011

As usual I have gotten behind on updating Ally’s blog.  I make tiny updates on facebook all the time, that I forget to find the time to write on here and even more importantly share pictures.  If you haven’t already, feel free to “friend” me on facebook  “Tina Maruszczak Krajewski”.  You can also check out our picasa photo/video album, as I seem to update that pretty often.  There is a link in the right column on Ally’s blog site or it is https://picasaweb.google.com/106238761607932251156.

If you haven’t heard already, we have some big news.  Today, September 29th, Ally had surgery at Children’s Memorial in Chicago for a fractured, left hip.  She has been having some pain off and on for the month of September.  On September 12th, we began to treat a urinary tract infection, but discomfort continued and we noticed it more and more when changing Ally’s diapers.  Then we saw she was keeping her left leg pulled in and if we gently pushed it out, it popped.  Many, Many SMA children have dislocated hips, but it is not very common to have a fractured hip.  Ally’s bones are super thin and very brittle.  A break can easily occur at any time during transfers, diaper changes, position changes….  It is important to remember that all of Ally’s care givers are extremely cautious and no one is to blame.  We do hope to more aggressively explore infusions/meds that can make Ally’s bones a little stronger (pamidronate).  In the future, Ally will also have to have spinal surgery as due to weak bones, she is developing a significant curve that can later cause pain and lung problems.  So far, bracing with a TLSO (back brace) is helping.

Ally did very well during her 4 hour surgery to fix her hip.  They put in a metal plate and 5 screws and the hip will hopefully do some healing on its own now too.  She is in a full body cast at this point to best promote healing and help with comfort.  I’m not sure exactly, but I hope we are only in the hospital a few days until pain is under control.  It will take awhile to heal, but Ally will lead us in what she can and cannot do.  The doc is hopeful that she will be able to sit comfortably again (with support) and even go in her stander after healed.

Here is an album of Ally’s xrays and hospital pics…

2011-09-29 Ally hip surgery-hospital-xrays

I’d also like to share some “FUN” albums of our end of summer and the beginning of the school year!  Ally is in full day kindergarten at Hanson Park School.  She has been attending about 3 days a week with me and a nurse, or just me and Ally.  She really seems to like it a ton, even though she has been a bit tired after dealing with pain at night.  Melissa is in 2nd grade and is becoming an outstanding reader and cheerleader.  Kristyn is sophomore and continues to cheer on the Varsity Team at Lane Tech.  She will be attending Homecoming this weekend with her boyfriend, Nick.  I hope to get home for a short time to take some pics.

Enjoy the pics…  Remember, if you click through them, some will be short videos…

 

2011-09-25 Yo Gabba Gabba Concert
2011-09-11 Shabbona Saints Patriotic Day and Cheerleader Fun
2011-09-06 Starting School
2011-09-05 Sensational September
2011-08-28 Brianna's 12th Bday Party – SMA Friends
2011 – powerchair, Dynavox computer, stander, microlightswitches, slings
2011-08-27 Visit from Uncle Josh and Seth and ZOO
2011-08-13 August Adventures
2011-07-30 Celebrating 1 year hospital free and 5.5 year bday
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