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Just wanted to do a very quick post and hope to do an update on Ally’s blog today. Ally is doing well with her recovery from spine surgery (off all pain meds and only on a muscle relaxer) but is dealing with serious urine retention issues and urology is now involved. We will be here for probably quite a few more days and are almost out of meal cards. If anyone isl interested in purchasing some, I just found out there is a way to do a Gift Card through the concierge “Best Upon Request” that can be used for room meal cards, cafeteria credit, and/or them to go pick up meals and other store needs within a 5 mile radius of the hospital. Their number is 513-803-4871 and the best time to call EST is 7:30-12:00 and 3-4:30 and messages can be left in between. They are only open M-F. If we have any credit at the end, they can be turned into a gift card for gas, a store….

In addition – Ecards can be sent to Ally using the link http://www.cincinnatichildrens.org/patients/resources/ecard/. Ally’s hospital room is A340.

The other way to support us is to help us “Pay it Forward” to Ronald McDonald House and families by donating $25 or any amount toward Thirty-One items that will be donated to families that use their services. This means a ton to my heart as a way of showing thanks and will help me meet my sales goals as I work towards being a director with Thirty-One Gifts​. You can use PayPal or Chase QuickPay to tina@angelally.com.

Thanks again. Through family and friend support, things are much easier to handle, even with this setback. Looking at the silver lining of how much better Ally is due to her successful spine surgery though.

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BIG FAVOR OF PAYING IT FORWARD – Will YOU help?
Looking for 20 or more friends/family to donate $25 to help families who use Ronald McDonald House. Donate ANY amount to my PayPal account (friend to friend to avoid fees) or Chase QuickPay at tina@angelally.com. Goal is to have $500 or more by Wednesday 3/30. PLEASE share with friends.
 
As most of you know, my 10 year old, Ally is currently in Cincinnati Childrens Hospital recovering from spine surgery. We are SUPER fortunate to have gotten into Ronald McDonald House Charities of Greater Cincinnati (RMH) right across the street so we can take small breaks, showers, have some meals…. RMH is also one of the charities that Thirty-One donates to and I am a Senior Consultant with the company. Upon arrival at RMH this time and in November, we got a Thirty-One bag filled with lots of goodies for Ally and our family. I would like to donate a minimum $500 in products for them to give to future families. By doing this, I will Pay it Forward a little and also meet my March sales goal as I am close to qualifying to being a director. Will you help me and other families? If you’d like more info, feel free to contact me by messaging or email – tina@angelally.com

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Just a couple more pics to end Easter Day. Melissa was at my sister, Sandi Maruszczak-Potempa with my mom. Kristyn headed back to college at University of Illinois and Ally had a very good day at Cincinnati Children’s Hospital. We were able to get Ally up into her powerchair for TWO two hour sessions with no pain. I even took a one hour nap at the hospital, three hour nap and Easter dinner at Ronald McDonald House (across the street from the hospital) and I plan to sleep at least half the night at RMH with Billy. We have an excellent team of nurses and respiratory therapists, so this is actually possible. I could also get back in a few minutes if needed. Ally is also doing excellent thanks to God and all the prayers!

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🐰 Happy Easter from Ally and our family!!!

 

Sunday, 3/27 @ 11:30 EST Update
Ally’s tummy is doing much better since we are giving her gut a rest to recover better from 8 hours of anesthesia and pain meds. She still has lots of gas on her morning stomach X-ray. Ally is not being fed her regular mixture but instead is getting nutrition thru TPN (a special IV food made specifically to her needs). Her intestine tract is waking up and her tummy is much better and softer. We do have to cath Ally, but she has had bowel movements on her own. We have been lowering her pain meds since she is doing so well and are completely eliminating oxycodone today. She will still have IV Tylenol and if needed diludid for pain. Ally continues to get in her chair 1x a day for 1-2 hours and we hope to do 2 sessions today and moving forward. The Easter Bunny (with mom and dad’s help on a short outing) brought Ally LOTS of goodies today to reward her for her bravery. Ally’s favorite thing in her basket is a Katy Perry DVD.

 

Ally will need to be in the hospital until her tummy is back to normal and she can handle her regular feeds. This could be a few days to much longer, but we are still HAPPY with her recovery so far.

Thank you again for your support, well wishes and prayers.

 

PS – My cell phone was replaced and is working. I can be reached at 773–981-7211 through messaging.

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Saturday 3/26 @ 1pm EST – Ally’s stomach/digestion setback

Short update — Unfortunately, her bowels and digestive tract are actually not working well and it took till yesterday late afternoon to realize since she is fed in her jejunum and not stomach, so Ally is off feeds and back on TPN (IV nutrition) but otherwise still doing EXCELLENT!! This is very common after being on anesthesia from surgery and even with the limited pain meds she is getting. We have a good plan to help her, but it was a setback.

 

She is still in hospital in the TCC unit, room A340. She will have to be back to her normal feedings until we can return home since we live so far. Otherwise we could have been discharged as soon as Monday. It varies greatly how soon we will get her back to normal feedings and for her stomach distention/hardest/bloating to go down. It is a setback but really things are going so well that now that I understand it, I’m not disappointed and know it’s part of the usual things that could happen.

 

I’ll post some pics I took the last couple of days of Ally.

 

Thanks again for your continued prayers, well wishes and support!!!

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Friday 3/25 2AM EST — Sorry I have been unable to update or respond to messages. It has been crazy good in a really excellent way for Ally! It is also hard since my phone dropped in the toliet (out of my pocket) on Wednesday and I only have Ally’s iPad for now. I will be switching Billy’s phone to my number 773-981-7211 today and then hopefully getting mine replaced very soon.

 

To the IMPORTANT part – our MIRACLE ALLY…. As I wrote before, Ally did EXCELLENT in her 8 hour spine surgery which included about 2.5 hours of prep and ending and 5.5 hours of her spine being straightened with 3 titanium rods and fused from T2 to her pelvis. There were NO complications at all and Ally only needed a little blood to keep her blood pressure regulated. Dr. Sturm and the Cincinnati team really did phenomenal and God and the angels have definitely been watching over them and Ally.

 

After surgery, Ally went to the PICU. She was a little puffy/swollen after laying face down for an 8 hour surgery, but actually looked pretty good and opened her eyes soon after we saw her. She was was “in and out” but doing excellent with extremely low pain meds since surgery. Overall, she was only on IV Tylenol and a push button dose of diluted given proactively for when she needs to be turned. These are a couple of pics right after surgery and Ally’s back with a bandage on her back  that is looking very good.

Ally had a good night’s rest, but I got only 1 hour of sleep on Wednesday as I got the room organized, learned all about Ally’s new needs and changes and talked with her excellent team and SUPERB night nurse, Sharon.  The team began talking about Ally switching back to the TCC, a less critical floor for pulmonary patients, within 12 hours of surgery. I was nervous to move out of the PICU, but after seeing how stable her spine was thru X-rays (not sure of the degree correction or inches grown yet), knowing she was on very limited pain meds and seeing Ally sit in her chair for an hour with no complications, I knew she was ready to move and I felt it would be safe.

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It is truly a MIRACLE and God’s blessing that Ally is doing sooooooooooooo well!!!! She is the most complex (spine wise) type 1 SMA child that Dr  Sturm has ever operated on since she should have had surgery years ago, but after seeing FIVE surgeons in the Chicago area and Ally only having IL Medicaid insurance, I couldn’t find someone to help her and her spine got worse and worse  over the 5 years. I explored and tried to get help when her scoliosis curve started at 20, then 40, then 70, then 70-90 degree “S” shaped curve developed. I reached out to Madison and Cincinnati since they are specialists in SMA and spine surgery on SMA kiddos (including type 1s who are the weakest). No Chicago orthopedic surgeon was ever willing to put in writing that they were unwilling  to operate which made insurance issues more complex.  However, when Dr. Sturm got on IL medicaid’s approved list, Lynn, his administrative assistant called me and we got the ball rolling to finally get Ally help. I am so happy I never gave up and kept fighting and advocating for Ally!!! I am also thankful to God and the support of our friends and family, and of course the medical team that has helped Ally!!!

 

Here are pics of Ally and a few of her gifts!  Thank you to those who have sent her some and for the meal cards.  With incredible support, we are good on meal cards (thru the room) for now, but if interested you can ask guest services about a credit to use in the cafeteria or outside meals that can be delivered.  Ally would also love getting Ecards thru the hospitals website (link in a previous post).

 

I am proud to say that yesterday evening, after Ally moved to the less complex floor of the hospital and I got the room organized (again), Billy convinced me to go to Ronald McDonald House (1/2 block away) to sleep and take a shower. I slept almost 8 hours  straight and am now writing this blog.  It’s now almost 3 AM and I plan to shower and head back to the hospital.  Billy has been there with Ally this whole time.  He will probably rest a little and then drive my mom back to Chicago to care for Melissa and see Kristyn who is returning from Spring Break and a visit to our Aunt Joy in Myrtle Beach. She will care for Melissa the rest of the time Ally is in the hospital. Billy will then return to Ally and I until she can go HOME! If we lived close, the docs guesstimate would be that she would go home in 3-4 days, but it will be longer till she can handle a 6 hour drive in her reclined powerchair or if we can get a medical flight approved.

 

I’ll update as I know more and Ally continues on her recovery.  We will be spending Easter in the hospital which is not celebrated in the hospital since it is a religious holiday.  That is okay with me since Ally is doing INCREDIBLE and that is what matters!!!  We may still be here 7-10-? Days but I do believe in God’s timing.

 

I cannot thank everyone enough for your prayers, well wishes and support!!! We could not do this all without you!  Thank you very, very, very much!!!

 

For now, I can be reached by iPad messaging or email to tina@angelally.com, Facebook, we are in room 40 in the TCC, and I hope to have a phone soon at 773-981-7211! Billy’s cell is 773-981-7219 and Grandma Carol’s phone is 773-802-6601.

 

Thanks again – Tina, Billy, Ally and the Krajewski Family❤️

 

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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.

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