9-30-12 — Ally surgeries and infusions THIS WEEK, Cookie Fundraiser, and other small updates

It is official — Ally will be having her surgeries/procedures THIS WEEK at Lurie Childrens Hospital in Chicago. We will be admitted on Monday 10/1 at 2 pm to order TPN (IV nutrition), surgery will be on Tues 10/2 to receive a port (for infusions, blood draws, IVs..) a couple of releases on her tight left foot and possible a broncoscopy (to check her trach and airway), then infusions of pamidronate to hep her build bone density on Wednesday and Thursday. The BIG goal of this is to prevent future fractures and also have easy access as needed for blood draws, IVs and infusions (which will be done every 4-6 months, but out-patient). We hope to be home by Thursday 10/4 in the afternoon or evening IF everything goes smoothly!!!!  I am a bit nervous, excited and scared, all at the same time.  This will be our first hospital stay at the new Lurie’s Children’s Hospital which is in the center of downtown.

Things have been a bit complicated with Ally lately.  We lost our full time nurse due to back problems with lifting and have started training 3 new, very nice, part time nurses. Our other nurses who had been with Ally from 2-4 years are also doing other things in their careers which are overall higher paying than homecare and we remain friends. Our main goal is to having nursing Monday thru Friday days and 1-2 evening shifts, so we will need 1-2 additional nurse, but I’m hopeful.  Ally has NOT started school this year.  We have run into MANY roadblocks with finding a better, accessible school, with an active parent community, and a principal that will accept her with her home nurses and me filling in/training as needed.  Chicago principals seem to have a lot of power and several have said  NO to handicap kids out of their attendance area (even though our home school is not accessible) and some have said NO to using our home agency nurses, wanting us to use agency nurses paid by CPS.  This is NOT safe for Ally and right now she is being denied a safe, appropriate education in the least restrictive environment.  We also have not even started homebound school yet.  We are working on getting a teacher and therapists to come to our home while we advocate and fight for to go to school with friends and lots of fun educational activities that enrich her life.  Luckily I have reached out to Equip for Equality, a free pro-bono, law group and there is a good chance I will help getting Ally the safe, education she deserves!  In the meantime, I have been focussing on training our new, home nurses, planning for her surgery and dealing with some of my own medical concerns.

Melissa started her new season of cheerleading with the Chicago Razorbacks at Shabbona Park and absolutely LOVES it!  She is a flyer and has a ton of spirit. She cheers on Sunday for the football team and will have her first competition on Sunday, October 27th.  The team has been extra nice in accepting Ally as a honorary mascot with the other 6 year olds on the team.  She has her own uniform and gets to be near the sideline for home games.  To raise $$$ for this brand new team, we are selling Cookie Dough which comes in proportional cookies (instead of tub).  4 dozen cookies are $15 with 40% going toward the team.  Check out the flyer and let me know if you are interested.  Our goal is to sell 15-20 items and if we are the highest seller, cheerleading fees would be waived next year.  Orders and payment due Oct 10th (checks payable to Chicago Razorback) sent to us at 3614 N. New England, Chicago, IL 60634. Approximate delivery Beginning of November.

Kristyn has also begun her new cheer season at Lane Tech.  They had their homecoming game this past Friday and did an amazing job.  She is a junior and is even taking some AP classes this year.  Here’s a pic of her team.  She’s the 2nd flyer (on top) from the left side.

 

That’s about all for now.  I will try to update as I can after Ally’s surgery this week.

Thanks for everyone’s support and prayers!!!

Tina and the Krajewski Family