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Archive for April, 2016

This information is from a previous post, with more details added….

ANYONE want to join us for a FUN Walk and Roll for the IL CURE SMA Chapter on Sunday, May 15th? OR MDA Walk on Saturday, May 21st? OR donate in honor of my daughter Ally (who is the bravest 10 year old most of us have ever met)???? Looking for family and friends to join us for fun and/or help once again…

1) Have FUN while helping Ally and others with Spinal Muscular Atrophy!!! This CURE SMA Walk and Roll and will be held on Sunday, May 15th at Independence Grove in Libertyville starting at 8:30/10-1:00. The Ally’s Angels team has gotten VERY small and we hope to re-grow with some family and friends joining us for FUN and time together. If unable to join the walk and festivities, please consider making a donation athttp://events.curesma.org/goto/ally. You can also click on the event button for even more information on the walk.

Once you click join team, there is a cost of $25 per adult, $10 per child age 4-15 & ages 0-3 free. This does include a walk t-shirt from the chapter, but we are also having Ally’s Angels Team shirts made for $3 each too. Of course the day of the walk, you can wear another shirt if you prefer.

I am a committee member for the walk and we are also looking for donations for our raffle tables. These can be items, tickets to events, gift cards…. To make a raffle donation or for more information about joining our team, contact Tina at 773-981-7211 (cell) or tina@angelally.com.

2) Our family will also be participating in a second walk for the Muscular Dystrophy Association (MDA) on Saturday, May 21st at 10 am at Catigny Park in Wheaton. This walk does not have a registration fee, but you should still click on the link to JOIN the Ally’s Angels team.  You can earn prizes based on donations and $ raised.  If you would like to join us for this walk or donate to the MDA which supports families and works towards a cure of SMA and 42 other muscle disorders, please contact me or go tohttp://www2.mda.org/goto/allysangels

 

3) Would you like to purchase an Ally’s Angels NEW team shirt for $3 to wear at one of the walks or to wear ANYTIME to show your support for Ally and raise awareness for SMA?

Ally's Angels 2016 shirt

ALL ORDERS NEED TO BE PLACED by May 4th. The sooner the better. I will hand deliver if close or you can pay a little extra if you would like it shipped to you.

Let me know sizes and you can PayPal or Chase QuickPay to tina@angelally.com or cash or check to me at 3614 N. New England, Chicago, IL 60634.

Shirt cost $3 – BRAND GILDAN (unisex t-shirt sizes used for most walks and schools)
Size youth S 6-8, M 10-12, L 14-16,
adult S-XL
*2XL & up $4.50

A BIG THANK YOU to my sister Sandi Maruszczak-Potempa and our cousin Heather Coleman for their help with the shirt & cost savings.

***We understand that we do MANY fundraisers for organizations that are incredible towards Ally and we know you can not contribute to all of them. Please pick and chose when you are able to help or join us at an event. Your support is GREATLY appreciated!!!***

The Krajewski Family

Ally’s personal website — www.angelally.com

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1st day substitute teaching since Ally’s spine surgery. 😊 Teaching 4th grade at Mary Lyons and then next week is a late Spring Break for Chicago Public Schools. Now, I also need to restart my Thirty-One live and online parties to supplement our family income. Ally is doing well, but still has complete urine retention and needs cathing every 4-6 hours. She saw a nephrologist and urologist this week, did bloodwork, x-ray, and ultrasounds of kidneys and bladder. Everything looks good and will hopefully just take time. She tolerated over 6 hours in her powerchair 2 days this week, so we will attempt partial-full days of school starting Tuesday 4/26 (after spring break) with myself and Ally’s nurses. Looking forward to getting back to “our normal routine.” Also hope to do some outings over spring break if anyone is interested in joining us.

PS – Be sure to look at the previous post about joining us in honor of Ally for 1-2 Walk and Rolls in May. Also let me know if you are interested in an Ally’s Angels tshirt for $3.

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ANYONE want to join us for a FUN Walk and Roll for the IL CURE SMA Chapter on Sunday, May 15th? OR MDA Walk on Saturday, May 21st? OR donate in honor of my daughter Ally (who is the bravest 10 year old most of us have ever met)???? Looking for family and friends to join us for fun and/or help once again…

1) Have FUN while helping Ally and others with Spinal Muscular Atrophy!!! This CURE SMA Walk and Roll and will be held on Sunday, May 15th at Independence Grove in Libertyville starting at 8:30/10-1:00. The Ally’s Angels team has gotten VERY small and we hope to re-grow with some family and friends joining us for FUN and time together. If unable to join the walk and festivities, please consider making a donation athttp://events.curesma.org/goto/ally. You can also click on the event button for even more information on the walk.

Once you click join team, there is a cost of $25 per adult, $10 per child age 4-15 & ages 0-3 free. This does include a walk t-shirt from the chapter, but we are also having Ally’s Angels Team shirts made for $3 each too. Of course the day of the walk, you can wear another shirt if you prefer.

I am a committee member for the walk and we are also looking for donations for our raffle tables. These can be items, tickets to events, gift cards…. To make a raffle donation or for more information about joining our team, contact Tina at 773-981-7211 (cell) or tina@angelally.com.

2) Our family will also be participating in a second walk for the Muscular Dystrophy Association (MDA) on Saturday, May 21st at 10 am at Catigny Park in Wheaton. This walk does not have a registration fee, but you should still click on the link to JOIN the Ally’s Angels team.  You can earn prizes based on donations and $ raised.  If you would like to join us for this walk or donate to the MDA which supports families and works towards a cure of SMA and 42 other muscle disorders, please contact me or go tohttp://www2.mda.org/goto/allysangels

 

3) Would you like to purchase an Ally’s Angels NEW team shirt for $3 to wear at one of the walks or to wear ANYTIME to show your support for Ally and raise awareness for SMA?

Ally's Angels 2016 shirt

ALL ORDERS NEED TO BE PLACED by May 4th. The sooner the better. I will hand deliver if close or you can pay a little extra if you would like it shipped to you.

Let me know sizes and you can PayPal or Chase QuickPay to tina@angelally.com or cash or check to me at 3614 N. New England, Chicago, IL 60634.

Shirt cost $3 – BRAND GILDAN (unisex t-shirt sizes used for most walks and schools)
Size youth S 6-8, M 10-12, L 14-16,
adult S-XL
*2XL & up $4.50

A BIG THANK YOU to my sister Sandi Maruszczak-Potempa and our cousin Heather Coleman for their help with the shirt & cost savings.

***We understand that we do MANY fundraisers for organizations that are incredible towards Ally and we know you can not contribute to all of them. Please pick and chose when you are able to help or join us at an event. Your support is GREATLY appreciated!!!***

The Krajewski Family

Ally’s personal website — www.angelally.com

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Home sweet Home!!! Ally is comfy in her bed, cathed and watching Katy Perry😍!! I want to personally thank Beth Lockwood , Annie Landefeld, Sherry Langland and the Cure SMA – OKI Chapter for your local support, gifts…..and listening ears while in Cincinnati. Thank you to all are friends and family who helped and/or sent gifts, meals and Thirty-One donations for Ronald McDonald House from afar and prayed for Ally. Thank you to my mom- Carol Neumann Smaron for soooooo much and friends-Brenda Scudder Zakrzewski, Jim Zakrzewski, Courtney Zak, Evelyn Schein, Jordan Schein for helping with Melissa. Thank you to Taylor Maruszczak for also helping with the dogs and house. We still have a long way to go with the recovery process and trying to resolve the urinary retention issue but we are HOME!!!! Ally will hopefully return to school in about a month and maybe for shorter periods sooner. One last thanks to God and the angels who watched over Ally and guided the medical professionals. 🙏😇

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Happy to be back in Chicago seeing this skyline. Crazy there is this much traffic on a Sunday afternoon, but focusing on the silver lining that we are 30 minutes from our home and Ally has done EXCELLENT on the 5-6 hour ride home (with some proactive, extra pain meds to keep her comfy). She and I have mostly stepped with only one stop to cough and suction her well.

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Officially on our way HOME after Ally’s spine surgery and some hospital recovery time. Two weeks total in the hospital wasn’t too bad due to how AMAZING the team is at Cincinnati Children’s Hospital and the incredible results of Ally’s surgery. She went from about an 80/90 degree “S” curve to around 40 degrees. I believe she grew a few inches too but we still need to do an official height. Thank you again for everyone’s prayers well wishes and support!😍

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4-1-16 @ 10:45 EST — GREAT NEWS, Goal to go home this Sunday

 

Ally is still working through urine retention issues, which are pretty common after a major spine surgery.  She has not gone on her own but after lots of practice and training from excellent nurses, I am confident in cathing and we have a clear plan of steps to help her get back to “the norm”.  This  includes finding a urologist at home, with consultation on the phone from Cincinnati till then.

 

Ally has begun Cardura medicine to relax the bladder neck, but we will be adjusting the dosage on Sunday and as needed. She could not use Flomax since it would (and when attempted began to) clog her J-tube. For now we are cathing every 6-8 hours. They are hopeful Ally will resume urinating on her own again, but it will just take time. With how successful her spine surgery was, I am okay with all of this and our plan.

 

We still have a long way in the recovery process and lots to organize with home nursing, getting new medical supplies and meds, figuring out a new routine for home after the semi scary, possible stressful 6 hour van ride home, but I will keep praying and am hopeful all will work out.

 

Thanks again for everyone’s support, prayers, well wishes, gifts, meal cards, donations for Ronald McDonald House…. We are soooo blessed to have soooo many wonderful friends and family in our lives!

 

P.S. – The pics are of Ally with her new musical movies I ordered through Amazon Prime and had delivered to the hospital with some Birthday $. She’s been overall very happy and pain is back under control with twice a day Celebrex and scheduled Tylenol. She will have some extra pain meds for the ride home and soon only be on meds as needed.

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