We had an AMAZING Weekend.  Brianna, who is 12 years old with Type 1/2 SMA came in from Rockford with her dad and cousin Maddizon. Unfortunately her mom was not feeling well, but we are soooooooooo happy they were still able to visit.  We went to two FREE, donated ticket events (The Windy City Roller Derby and Circus in the Park) and also had a SLEEPOVER. Circus in the Parks was a Starlight Foundation event.  In addition, Sophie (who is from Chicago and is 7 months old with SMA) visited with her parents and grandma.

Check out my HUGE photo album and short videos of some of our FUN!!!!  We have to do this more often with additional families and friends (with and without SMA).

2011-10-22 FUN Weekend with SMA families Derby Sleepover Circus

Ally is still in her full body brace/cast, but we are trying to still allow her to experience some extra FUN activities.  She is off of all pain medicines and no longer needs Motrin or Tylenol either.  She goes to her next orthopedic appointment November 2nd and we hope she can move into a simple hip brace that will allow her to sit again.  We will have to see how the healing goes since her bones are sooooo tiny and brittle.  Please continue with the prayers and well wishes.

Ally continues to have homebound school 1 hour a day at home and speech once a week for an hour. In addition, she has music or art therapy from Horizon Hospice each week. Below is an amazing Music sessions with Ms. Rachel, Ally, Melissa, and their cousins Jacob and John Jr.!!!!!

2011-10-20 Music Therapy with Family

****PLEASE be sure to see my last post about Joining and/or Donating to the Ally’s Angels Team for the Chicago MDA Muscle Event! We are looking for business and family sponsors for the NEW Ally’s Angels T-shirts too. Please contact Tina if you are interested in sponsoring, donating, and/or  joining our team…. email- tina@angelally.com or home 773-283-7211. You can also check out our Team Fundraiser Page at http://www2.mda.org/site/TR/Walk/55-E3-637-ChicagoDistrict?pg=team&fr_id=1468&team_id=4335 ****

Thanks again for everyone’s continued suppport!

We LOVE when you leave comments or send a message. What have you been up to lately?

Tina, Ally and the Krajewski Family

Please consider joining the

Click here to view the team page for Ally’s Angels

If the text above does not appear as a clickable link, you can visit the web address:
http://www2.mda.org/site/TR?team_id=4335&pg=team&fr_id=1468&s_tafId=3487

The Chicago Muscle Walk will be held indoors at United Center on Saturday, December 10th.  Registration is at 8am. Walk begins at 10am with lots of Family FUN!!!

Here’s a little about Ally…

Ally is 5 ½ years old and has Spinal Muscular Atrophy (SMA Type 1) which is one of the 43 diseases MDA helps with.  Ally is not able to make protein for any of her muscles due to this genetic disease, but she makes up for her muscle weakness with her bright eyes and strong brain.  Although Ally can only move her head, fingers, arms and legs a little bit. She is very intelligent and learning to operate her own computer with her eyes and a tiny switch.  Ally uses her computer to talk, play game, and show us what she knows.  She attends Kindergarten at Hanson Park School. Ally is also beginning to drive a power chair with a very special lightweight controller.  Every day with Allyson is a blessing, as she teaches everyone around her the true meaning of life, courage, love, friendship, and faith.

One of our dreams for Ally is to be able to attend MDA Summer Camp when she turns 6 years old (She will be 6 this February 2nd!).  Although kids with SMA Type 1 used to be given a life expectancy of 1-2 years, Ally continues to beat the odds.  With your help and the MDA, I have high hopes that MDA Camp summer and so much more can become a reality for my brave and courageous Ally.  Other ways MDA has helped our family is by paying for the medical costs of the clinical trial Ally participated in Stanford, CA from 6 months to about  2 1/2 years old, paying for parts of her size 1 wheelchair/stroller and offering us hope and support.  MDA can also help families with flu shots, clinic appointments, camp for kids and medical equipment repairs/upgrades (which we plan to do this year).

Thank you again for all your support.  We hope you consider joining the Ally’s Angels Team and/or making a donation.  Use the above link to make an online donation, or mail in a donation: Make all checks payable to: Muscular Dystrophy and please put my name in the Memo field.

Mail to:
Tina Krajewski
3614 N New England Ave,
Chicago, IL, 60634

Thank you for giving our family and so many others the gift of HOPE. 

Sincerely,

Tina, Billy, Ally & the Krajewski Family

PS — Be sure to check out Ally’s Blog site that includes lots of pics/videos and what she’s been up to…….. www.angelally.com

PSS — We are looking for sponsors (companies and/or families) to be featured on the back of our NEW Ally’s Angels t-shirt. Minimum donation of $200 (the bigger the better).  Please contact Tina if you are interested at tina@angelally.com or 773-283-7211. Logos and donation needed by November 20th to guarantee to be printed on t-shirt. Checks payable to Angel Allyson Fund NFP. 

T-shirts will be sold for $10 each with donations going to both the MDA and the Angel Allyson Fund NFP. (Sizes 2T – 4XL).  Contact Tina 

Check out our photo album…

2011-10-17 MDA Muscle Team Event

Just wanted to share that Ally is overall doing well. She will have her full splint/cast on till minimum Nov 2nd. Her hip bone is sooooo tiny, they wanted to give it the best chance to heal properly. This means that she has to stay flat, but we can get her out a little for some fun in her stroller/wheelchair. We are able to use regular tylenol or motrin for a little bit of pain or achiness (probably mostly from being in the spint). Ally is my HERO!!! I hope she inspires lots of people tonight too!

Ally is doing homebound school right now.  Miss Clare comes everyday for an hour and Miss Eileen is also able to come for 1 hour of speech each week.  We really miss her kindergarten class, but healing is most important right now and we need to do as little transfers a possible, and keep her comfortable and happy.  We hope to visit school for Halloween and maybe even a couple hours each week.  A special thank you to ALL of her 30+ classmates who made her homemade cards and to the teachers coordinating the cards and for sending some classwork home.

Ally is also very lucky to have music or art every week through Horizon Palliative Care.  Be sure to see my last post and the video montage of Music Therapy with our family!

Check out our OUTSTANDING October Album that I continue to add too.. Click on the album cover below…

2011-10 Outstanding October

Here’s a montage that Rachel made for us to have documented memories of some of our music sessions…

Ally is VERY brave and doing well with pain (as we use some oxycodone OR tylenol). She is overall still in a good mood and enjoying her movies. She has already had music therapy in our home this week and her homebound teacher will begin tomorrow with her (will most likely skip about 2-4 weeks of school). We walked to the park yesterday to bring Melissa to Cheerleading and get some fresh air. We will keep things low key and have our first follow-up appointment with the orthopedic surgeon on 10-12-11.

I added more pics to our hip surgery album, including pics of going home…

2011-09-29 Ally hip surgery-hospital-xrays-splint-HOME

Ally’s pain from surgery seems overall under control with a pain med (oxycodone) being given every 4 hours through her j tube. Orthotics came by and modified her full body splint/cast (that is only across the top of her body and padding/velcro under her). She can now be transferred short distances and she fits in her chair/stroller to go home. We are also able to lift the splint/cast to the side easier for diaper changes and to use AFOs. Ally does need to remain overall flat and be transferred as little as possible. She had a metal plate and 5 screws put in her hip and since her bones are sooooooooo tiny and brittle, we need to be extra extra cautious to allow it to heal properly.

We have a little more logistics and clear orders/precautions to work out, but most likely this will all be worked out on Monday. I am hopeful (but not positive) that we will go home later in the day on Monday 10/3. We will then have a follow up with the orthopedic surgeon in about a week and might even get to simplify her splint/cast some more depending on how Ally is healing and doing. She might need to wear some form of cast/splint for around 4 weeks. Most of this time, she will spend safely in her bed or we will work out some way she can come in our living room. This may change as time goes on and as we visit the ortho department. We will not be going to school at all in the near future and hope to do homebound school with Ms. Clare.

I’ll try to add some more details soon and some new pics…. including some special visitors and meeting a new SMA family today…….

As usual I have gotten behind on updating Ally’s blog.  I make tiny updates on facebook all the time, that I forget to find the time to write on here and even more importantly share pictures.  If you haven’t already, feel free to “friend” me on facebook  ”Tina Maruszczak Krajewski”.  You can also check out our picasa photo/video album, as I seem to update that pretty often.  There is a link in the right column on Ally’s blog site or it is https://picasaweb.google.com/106238761607932251156.

If you haven’t heard already, we have some big news.  Today, September 29th, Ally had surgery at Children’s Memorial in Chicago for a fractured, left hip.  She has been having some pain off and on for the month of September.  On September 12th, we began to treat a urinary tract infection, but discomfort continued and we noticed it more and more when changing Ally’s diapers.  Then we saw she was keeping her left leg pulled in and if we gently pushed it out, it popped.  Many, Many SMA children have dislocated hips, but it is not very common to have a fractured hip.  Ally’s bones are super thin and very brittle.  A break can easily occur at any time during transfers, diaper changes, position changes….  It is important to remember that all of Ally’s care givers are extremely cautious and no one is to blame.  We do hope to more aggressively explore infusions/meds that can make Ally’s bones a little stronger (pamidronate).  In the future, Ally will also have to have spinal surgery as due to weak bones, she is developing a significant curve that can later cause pain and lung problems.  So far, bracing with a TLSO (back brace) is helping.

Ally did very well during her 4 hour surgery to fix her hip.  They put in a metal plate and 5 screws and the hip will hopefully do some healing on its own now too.  She is in a full body cast at this point to best promote healing and help with comfort.  I’m not sure exactly, but I hope we are only in the hospital a few days until pain is under control.  It will take awhile to heal, but Ally will lead us in what she can and cannot do.  The doc is hopeful that she will be able to sit comfortably again (with support) and even go in her stander after healed.

Here is an album of Ally’s xrays and hospital pics…

2011-09-29 Ally hip surgery-hospital-xrays

I’d also like to share some “FUN” albums of our end of summer and the beginning of the school year!  Ally is in full day kindergarten at Hanson Park School.  She has been attending about 3 days a week with me and a nurse, or just me and Ally.  She really seems to like it a ton, even though she has been a bit tired after dealing with pain at night.  Melissa is in 2nd grade and is becoming an outstanding reader and cheerleader.  Kristyn is sophomore and continues to cheer on the Varsity Team at Lane Tech.  She will be attending Homecoming this weekend with her boyfriend, Nick.  I hope to get home for a short time to take some pics.

Enjoy the pics…  Remember, if you click through them, some will be short videos…

2011-09-25 Yo Gabba Gabba Concert

2011-09-11 Shabbona Saints Patriotic Day and Cheerleader Fun

2011-09-06 Starting School

2011-09-05 Sensational September

2011-08-28 Brianna's 12th Bday Party – SMA Friends

2011 – powerchair, Dynavox computer, stander, microlightswitches, slings

2011-08-27 Visit from Uncle Josh and Seth and ZOO

2011-08-13 August Adventures

2011-07-30 Celebrating 1 year hospital free and 5.5 year bday

Ally and with her medal and Baby Annie

CELEBRATING BIG!!!!!!!! Today is ONE FULL YEAR that Ally is hospital FREE!!!!!!! She has never made it this long and we are sooooo thankful to her trach in keeping her healthier and also her home nurses who have helped us! On Tuesday, August 2nd is also her 1/2 Birthday. She will be 5.5 years old!!!! This is HUGE for an SMA Type 1 child who was given less than 2 years to live. ??Party plans??

If anyone would LOVE to give Ally a small 1/2 Birthday or 1 year Hospital FREE celebratory gift, we are starting a collection of colorful shoelaces for her!!!! Sounds strange, but we are now using shoe laces to tie/hold her trach in place around her neck. As you know, Ally is super, super fashionable, so we need ALL different colors and designs.  Regular length is fine and I’ve even gotten her first few at the Dollar Store.

We also collect hair bows and earrings for my sweetie. Don’t feel obligated, but if you see something cute, we’d love to add it to her new collection!  Thanks in advance to anyone who’d like to add to these collections.

Address — Ally Krajewski – 3614 N. New England, Chicago, IL 60634

We’ve been Super, Super BUSY this summer!!!  Ally had summer school till July 21st and is now on vacation until September 6th, when she begins KINDERGARTEN!!!!  Can you believe my little girl is starting KINDERGARTEN?!  Miracles DO Happen and there is Power in Prayer!  Ally will be attending Kindergarten at Hanson Park School.  She will have a one-on-one aide and will attend with a home nurse and/or me.  School is full day, but we will transition as Ally tolerates and see how well she does.  We are lucky that the Speech Pathologist and OT already have worked with Ally in our home.  Ally has also started to go to Shriners Hospital and they are helping us with power wheelchair goals and finding an appropriate controller.  This week they helped adjust her braces (AFO shoes and TLSO to help her sit straighter).

Kristyn turned 15 years old on July 14th.  She got her braces off and has been busy with her first boyfriend, friends, and cheerleading.  Melissa began cheerleading for the first time this week too!  I’m so happy she has something that she can be involved with that brings her great joy. Billy and I celebrated our 14th Wedding Anniversary on July 25th!!!  In November, it will be 20 years that we have been together through thick and thin.  I LOVE him more each day (well most days – LOL) and I’m so grateful to have him along for this crazy journey of life.

Enjoy some of our newer albums.  CLICK on the covers to see ALL the pics and some short videos.

2011-07-22 JULY tons of FUN

2011-07-04 4th July Weekend

2011-07-02 Legoland FUN

2011-06-28 Ally’s setups for school

2011-06-25 Gianna’s Bday Party

2011-06-22 MDA Camp visit

2011-06-21 Computer games with SWITCH on Dynavox

2011-06-19 Fathers’ Day at Lincoln Park Zoo with Starlight Foundation

Click on the photo album cover to see the pics and some short videos…including us being on WGN news a tiny bit…

2011-06-17 Playdate — Sleepover and WGN Event with Ralph’s World and Kraft Great Kids