Wow – I cannot believe I am writing this again as we plan for the 2nd attempt for Ally to have SPINE SURGERY in ten days at Cincinnati Children’s Hospital. As many of you know Ally has extreme scoliosis and her spine curves in an “S” shape at about 70-90 degrees top and bottom affecting her breathing some, causing some pain and eventually would get worse and worse. She was originally scheduled and in the hospital to have surgery on November 11th 2015, but due to a urinary tract infection found last minute, we had to reschedule for March 16, 2016.
Below is what Ally’s spine looks like laying down and it is even worse sitting up. She will have titanium rods placed in her back to straighten her spine, the best the surgeon can, and then have her spine fused to stabilize it. It will be one long surgery lasting 6-10+ hours since Ally’s curve is so complicated and the most complex Dr. Sturm has ever done on a child with SMA. Unfortunately, she should have had surgery years ago but we were unable to find a surgeon willing to operate on a type 1 SMA child in the Chicago area. Ally has beaten MANY odds and we did not give up as her parents, so we finally got approval for her to get surgery in Cincinnati where many SMA children are operated on yearly. It is very scary, but we are looking to maintain and maybe improve Ally’s quality of life.
The tentative time-frame is:
- March 4th – Last day of school so that Ally can avoid school germs and be healthy for surgery. If she even has a cold, surgery would be postponed again.
- March 5th-March 13th — hang out at home with family and a few visits from healthy friends and family. Do homebound school.
- March 14th — late morning, begin our 5-6 hour journey to Cincinnati, OH and admit Ally to Cincinnati Children’s Hospital on the pulmonary floor early evening to begin preparations for surgery. I will stay with Ally the entire time at the hospital and my mom and Billy will be staying at the Marriott hotel 1/2 mile from the hospital. We are on the waitlist for Ronald McDonald House even though I began my request in January. Hopefully we will get a room soon after admission.
- March 16th — Spine Surgery 6-10+ hours and then begin recovery in the PICU. The first 24-72 hours after surgery are usually extremely tough on the body after going through so much during surgery and lots of adjustments with pain meds…..
- Once more stable, Ally will be transferred back to the pulmonary floor until she is stable enough to travel home and pain is under control. There is hope that she will be able to do a medical flight home with myself, a nurse and respiratory therapist so she can go home sooner than later. A medical flight is much easier on her than the 5-6 hour car ride while she is still recovering. Ally will be in the hospital on average from 10 days to 1 month. It really depends on Ally.
- Ally will need 6-8 weeks on average to recover at home before she can go back to school full time. Once she tolerates some time in her wheelchair, she may do small outings and/or short visits to school with hope to return in May and maybe get to participate in the Chicago Special Olympics or watch some of her classmates.
THANK YOU! THANK YOU!! THANK YOU!!!
Check out this AMAZING video and album of just some of the INCREDIBLE friendships and support Ally got the last week of school from her school friends and staff at Coonley School. Words cannot express how much this means to Ally and our family. Many happy tears seeing how much she is cared for!!! Thank you soooooooooooooooooooooooo very much!!!
CLICK ON ALBUM TO SEE PICS AND VIDEOS…
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2016-03-06 Ally’s last week of school before surgery |
I will update when I can on how things are going at the hospital on Ally’s blog at http://www.angelally.com and more often on facebook at “Tina Maruszczak Krajewski”. Feel free to friend me if we are not already friends.
Some people have asked how they can help. Melissa will be staying with our next door neighbors – the Zakrewski’s until my mom returns back from Cinci after about a week to take care of her the remainder of time we are in the hospital. I have heard that the hospital allows you to purchase discounted meal cards or even get food delivered to the hospital. Eating at the hospital adds up very quickly and we are always grateful for any help. I believe meal cards can be purchased through Guest Services at 513-636-5009 or through the Gift Shop at 513-636-4310. Ecards can be sent to Ally using the link http://www.cincinnatichildrens.org/patients/resources/ecard/. Ally’s hospital room will change multiple times, but I believe we will easily be able to be found in the hospital system. I will also update as we know.
Most important, Ally and our family are extremely grateful for your support, prayers and well wishes!!! This is how we have gotten this far and given Ally the best life possible. Thank you!!!!
If anyone needs to reach us, here are our cells — Tina 772-981-7211, Billy 773-981-7219 and Grandma Carol 773-802-6601.
P.S. — I know it is odd, but one more way to help is to host an online, catalog or real Thirty-One Show and/or place an order. This helps supplement our income when I cannot substitute teach and Billy gets “vacation” checks without his usual overtime.
This is from my facebook business group — “Totes and More with Tina Krajewski VIP GROUP” — Looking for hostesses to get FREE and DISCOUNTED products! Hope to get dates on my calendar to help supplement our family’s income with my daughter, Ally’s spine surgery coming quickly.
1) It’s not too late to invite friends to do a live party at your home or another location Friday 3/11, Saturday 3/12, or Sunday 3/13. I would give you a $20 extra hostess credit if your show is over $200 for those days I have left in March.
2) Book a Facebook/catalog show during March or April. It can be for you to earn FREE and discounted products OR a FUNdraiser where I will donate my 25% commission (while meeting sales goals). Facebook shows typically last about a week and we play games online while friends and family shop.
3) I am booking shows for April and even May. Don’t miss out on our incredible Spring/Summer catalog and sales!!
4) Are you interested in joining my team and earning 25% commission while having FUN and earning TONS of free and discounted products, maybe even a trip. I am close to becoming a director with Thirty-One and love helping others. It’s only $99 for a kit valued at over $400 to give it a try.
Contact me by Facebook message or my cell is 773-981-7211. Looking forward to hearing from some of you soon. 😊
Angel Ally Blog - SMA Type 1 
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