New date for SPINE SURGERY – March 16th

Just got a call from Cincinnati Childrens Hospital — Ally’s new spine surgery date is March 16th!!!! She will have to also go Cinci 2-4 weeks before for new pre-op appointments. Then she will be recovering in the early spring, but will hopefully be able to return to school before the end of the this school year and be active in the summer.

We will 99% do a Birthday Party/Fundraiser before that at Orbit Skate to help with some of our traveling costs and time off work (while still keeping up with bills).  Ally’s IL medical insurance pays her medical bills, but the costs to travel to and from OH all these trips adds up quick, in addition to expenses while in the hospital.  We will always find ways to make things happen for Ally and all our girls though.

Thanks again for everyone’s support!!!

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11-21-15 Alvin and the Chipmunks LIVE

Ally had an INCREDIBLE time at the concert with her mom, Grandma Carol, and sister Kristyn. (Melissa went to a wrestling match and dad shoveled). The Rosemont Theatre was incredible and gave us seats only about 5 rows back and let Ally join the Meet and Greet. Our shirts were Halloween costumes that arrived late but were perfect for today. “A” for Ally/Alvin, “T” for Tina/Theodore, and “S” for Smaron/Simon. It was worth braving the snowstorm for a memorable time!

Use the link below to our Picasa site to see more pictures and short video clips from the concert.

https://picasaweb.google.com/106238761607932251156/112115AlvinAndTheChipmunksLIVE

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11-14-15 HOME safe and sound!!

Just wanted to update everyone that we made it home last night at 7:30pm. Ally is doing really well and is actually only doing a 3 day course of antibiotics, so her last dose is today. It is a very basic UTI, but I completely understand the need to take every precaution before doing the biggest surgery of her life. However, I am worried about how worse Ally’s curve will be in 6 months, the SPRING (after the infection is gone completely and we are past cold and flu season). She is also experiencing pain on a pretty regular basis when in her wheelchairs. I requested orders for a new TLSO brace to be made in Chicago and hopefully this can be made quickly and help with some comfort. I also have a call in to Dr. Sturm’s nurse to discuss scheduling and what pre-op things will need to be redone in Cincinnati and if ANY can be done in Chicago when we start on this path again towards spine surgery.

We will get back to living life to its fullest each day. Our day nursing care for Ally and school will start back up on Monday. She is excited to see her friends again. Also want to find some fun things to do as a family before it gets to cold. Have to watch finances though because these trips to Cinci and time off work have taken a toll, plus we will do it all again in the spring. Ally’s insurance covers her medical expenses, but gas, food, hotels, donation to Ronald McDonald House….add up quick in combination to working less days. We will always find a way though!

Here are a few pics of our trip home and Ally and I in our matching “NEVER GIVE UP” shirts!!! Thanks again for everyone’s support, love and prayers!

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11-11-15 Surgery CANCELLED till Spring!!!

 
Ally’s Spine Surgery is cancelled till April/May. They JUST found a UTI (urinary tract infection) at 9am (RIGHT before rolling down to surgery) because a routine pre-surgery urine culture was requested at 6am. Ally HAS to be at her best health for surgery, but I have lots of tears after all the planning, precautions, and emotions put into it. Surgery will most likely be April/May and we restart completely with pre-op appointments. They are going to treat Ally’s UTI with IV antibiotic (rocefin) today and tomorrow morning and we will go home early tomorrow on Jtube antibiotics. She will most likely resume school on Monday since she currently shows no signs of infection since we caught it early. Hoping we can resume our regular home nurses very, very soon and move on to living each day to its fullest and looking forward to getting Ally help in spring.

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11/11/15 Small Hospital Update 2 am EST

Sorry I have not posted since we arrived at Cincinnati Childrens Hospital with Ally. It has been non-stop preparations and adjustments since we got to this AMAZING hospital. I’ve barely had much sleep as I help the staff learn about Ally and we prepare for spine surgery tomorrow at 8am EST. It’s currently 1:50am here and we have to do breathing treatment at 4am then another pre-surgery bath with special soap. Then lots of discussions before she goes down. I will probably update again during the approximately 7 hour surgery. Here are a few pics to share before my 2 hour (maybe) nap.

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11/9 Girl Scouts and Preparing for Spine Surgery

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Quick updates from Facebook that I’m quicker to get to, but I will try to update Ally’s blog often over the next few weeks. Feel free to friend me at “Tina Maruszczak Krajewski” and/or click on the link in the top corner of Ally’s blog to subscribe to get emails when I update.

1) Girl Scouts — Yesterday, Ally had some VERY special visitors and was officially pinned a Junior Girl Scout by her school friend Grace (since we missed the last meeting). Thank you to troop leader, Tracy Baldwin, for stopping by with her girls and for the Girl Scout gifts and card from the troop. Your kindness really means a ton!!! It’s soooo awesome that Ally is part of the Girl Scout sisterhood at Coonley School!!! Everyone, keep her in mind for a few boxes of cookies this winter.

2) On our way to Cincinnati Childrens Hospital — 1 hour left of driving out of 5+ hours. Ally will be admitted today for surgery preparations and so they can get to know her baseline breathing, get a central line and other lines, echo, TPN tomorrow night… And then her surgery will be Wednesday 11/11 at 8am for spinal straightening and fusion since she has a 90/90 S curve scoliosis. This is a huge surgery full of lots of stress/anxiety for us, but needed for Ally’s future. Although we wish this could have been done at a local hospital, we are lucky to be going to one of the best SMA hospitals in the country. Thank you to my mom, Carol Neumann Smaron, for coming with us for a few days and then returning to Chicago to take care of Melissa. Thank you to Brenda Scudder Zakrzewski & Jim Zakrzewski for taking care of Melissa this week, DeeDee Jashari for stopping by last night, Nurses Merlee and Stefania for helping us prepare and Stefania for the goodies, cards from school and Girl Scouts…and especially a BIG thank you for everyone’s prayers and well wishes. I will try to update on Facebook or Ally’s blog, http://www.angelally.com, when I can.

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