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5pm EST — Ally is ALL DONE!!! Surgery went well with NO complications at all!!!! Only needed a little blood to keep her blood pressure regulated. Her curve was best corrected as the doctor could correct due to how complex her scoliosis curve was (since no Chicago doctors would operate on Ally or clearly say no). We will find out exactly how much better her spine is within a few days. My girl is a ROCKSTAR and our ANGEL on EARTH!!!! Can’t wait to see her and kiss her very soon. GOD IS GOOD!! Thank you for everyone’s support and prayers! PS -Before the news I dropped my iPhone in the toliet so only have Ally’s iPad now.

We have had two more good updates from the surgery room while we wait in the BIG private room since Ally was the biggest surgery today.

4th update – 4pm EST  Things are going well. Starting to finish up and then close. About an hourish left. Dr. Sturm may come in a little sooner to talk to us. Desperate to see my girl and start the recovery process. Thank you again for prayers and support!!!

3-23-16 WAYS to HELP

Per request — 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 (one for room service and one for cafeteria -both greatly appreciated) 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. She will be headed to the PICU after surgery but not sure room number yet. 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 I set up a 5 day Fundraiser through Thirty-One to “Give Back” and support Ronald McDonald House and families that stay there. Check out info on Facebook and/or contact me if you’d like to help. 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.

3-23-16 1pm surgery update

2 updates from the surgeon – After going in the surgery room at about 9am, the incision was done about 11am. Just got update at 12:30 and things are going well. Thanks for the continued support and prayers. Hanging out in a large, private waiting room with Billy, my mom, and a good friend, Kelly Whistler and daughter Kayli who is here from Chicago for consultations from Cinci docs this week.

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9:40 am –  Thank you for ALL the continued prayers and well wishes. Ally just went into the operating room for her spine straightening surgery and fusion with Dr. Sturm at Cincinnati Childrens Hospital. It will be 6-10 hours. Praying hard myself and grateful for this opportunity to maintain and possible improve her quality of life, less or no pain, and happiness!!! PS – The gorgeous hospital gowns are made by Ally’s loving Grandma Carol Neumann Smaron. The purple one is in memory of and hoping her angel friend, Brianna McDanel is looking over her. 😍

I will update as I can but more often on Facebook. If you’d like to friend me, I am under Tina Maruszczak Krajewski.

There is information on Facebook about a 5 day Thirty-One Fundraiser I set up for Ronald McDonald House to give back, say thanks and help other families.  You can contact me for more info at 773-981-7211 cell or tina@angelally.com

Thanks again for everyone’s continued support and prayers.

LOTS of EXCELLENT NEWS and a small setback. The small setback is Ally had refluxed several times this morning. We think it might be since her tummy bile wasn’t draining well or ??? but Ally is doing better this afternoon. EXCELLENT NEWS — Ally had a new GJ tummy tube placed (which I think helped her tummy), the IR team was able to get a double lumen PICC line placed even with her difficult veins, labs are drawn, another urine analysis was done and is negative, and everything is on track!!!

“Cherry on Top” GREAT NEWS – We got a call from Ronald McDonald House and they have a long term room for us. They had us on the original waitlist from last week’s postponed surgery so our name came up quicker!! We only had to pay one night at the nearest Marriott and now donations for each night at RMH, plus they provide several news.

All in God’s Time!!! Thank you again for everyone’s support and prayers. It really means a TON!!

 

All settled in at the hospital. Ally is in the TCC unit in room 8351 till Wednesday and then will be in the PICU after surgery. Almost everything was all set for Ally when we arrived since I emailed her nursing plan of care and hospital guidelines including things needed in her room. Night breathing treatment is done and just sorting through a couple of medicine clarifications. Tomorrow her PICC line will be placed, labs drawn, hopefully GJ stomach tube change, and special showers to prevent germs. Spine surgery will be Wednesday morning and last 6-10 hours. Thank you again for ALL the support and prayers!!!

Ally well wishes 1

Our pediatrician just called and all urine culture results are final and negative so we WILL be traveling to Cinci early afternoon tomorrow/Monday. Ally will be admitted Monday to prepare for spine surgery Wednesday at 9am. Thank you for the continued prayers and positive thoughts.

As some of you know from Facebook, Ally’s spine surgery scheduled for 3/16/16 has been postponed once again due to bacteria in her urine (UTI).  She is NOT sick and has no symptoms, but we tested BEFORE traveling 5-6 hours to Cincinnati since this is why it was cancelled in November and it is common for children who have chronic conditions (using briefs) to get UTIs.

 

The hopefully good news is that we might be able to do it as soon as next week, Wednesday 3/23/16!  Ally really needs this surgery since her spine is curved so much!

 

For those familiar with the medical world — Just got details from our spine nurse —  Dr. Sturm would like Ally to continue antibiotics for the UTI till Friday 3/18. He would like a urine analysis ordered STAT on Saturday 3/19 after the antibiotics end to check for bacteria. It is okay to order the culture too, but they only need the analysis. If clear, we will travel to Cincinnati on Monday 3/21 early afternoon and admit Ally to the hospital early evening Monday 3/21 for spine surgery Wednesday 3/23 at 9 am.
We are on the waitlist (which sounds quite long) for Ronald McDonald House for when we are in Cincinnati and also have a tentative discounted (but still expensive) reservation for the Kingsgate Marriott half a mile from the hospital.  I will stay with Ally in the hospital the entire time, but this is for Billy and my mom to easily come back and forth.  My mom will come with us for the initial days in Cinci and then return to Chicago to take care of Melissa.  If surgery occurs, my mom will be in Chicago for her 60th Birthday on 3/29, but we GREATLY appreciate her help!!!!  We will also be celebrating Easter in the hospital away from Melissa and Kristyn.
I am trying to find out if JourneyCare or an alternate nurse from our home nursing agency can do the urine catherization for us since we do not have a nurse this Saturday 3/19, or we might have to bring her in to the doctor’s office (or maybe find a mom of another medically fragile child to help us).
Ally will stay home this additional week from school to avoid any additional germs. There are soooo many going around that we need to be cautious. Her stomach is also already upset from the antibiotic and we have doubled her pro-biotic to help her.
Thanks again for everyone’s support and PRAYERS,
Tina and the Krajewski Family

Ally well wishes 1.JPG Ally well wishes 2.JPG 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.

Ally's spine xray 2-6-16 laying

The tentative time-frame is:

  1. 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.
  2. March 5th-March 13th — hang out at home with family and a few visits from healthy friends and family.  Do homebound school.
  3. 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.
  4. 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…..
  5. 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.
  6. 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…

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. 😊

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