5-13-12 Mothers’ Day, Walk and Roll, and new photo albums

Happy Mothers’ Day to ALL Moms and Grandmas and those who help as mothers!!!

Shared this on facebook today, but also thought it might be good to blog my feelings on Ally’s site.  Part of the reason I have a blog is to share all the crazy, mixed, good and hard emotions of living a life with SMA.  I mostly try to focus on the positive and good things in our life, but also need to admit that not every day or week, or sometimes month is easy.  I AM blessed though and God will guide me.

Going through TOO many emotions lately… as Mothers’ Day is here (and I try to be the best mom possible for my THREE daughters, constantly advocating and fighting for Ally for medical and school things and helping her survive and live each day as happily and as healthy as possible (now 6 with Spinal Muscular Atrophy, but worried how many more Mothers’ Days I will have with her) and occasionally running out of fuel. Then I’m also trying to find a way to be the best mom possible with my little energy left for Melissa (8) and Kristyn (almost 16) and trying to give them enough attention and special love/time, but knowing its not enough at times. Lucky to have my mom and sisters to help some.  Also, VERY, VERY lucky to have Billy and also friends and family, but wish I could do more as mom of all 3 of them. Then, there’s soooooo many emotions as Ally has 1 month till she graduates from Kindergarten with a huge school celebration (and I’m still fighting so many battles there, but also having some amazing experiences and friendships for her). Will I get to see her at other graduations? I have high hopes for the future, but medical statistics and not knowing God’s plans scares me. ….. Just gotta focus on the positive and live each day to its fullest! Sorry to get so personal on facebook, but need to get out how I am feeling as too many tears (happy and scared) keep filling many of my days.

  I’m also praying hard and thinking of all of those Mommies whose children are in heaven, or those who’s mothers are in heaven. I don’t know what I would do without my AMAZING MOM, Carol Neumann Maruszczak or my girls. Cyber (((HUGS))) to all of you who have loved ones in heaven!

While I’m blogging, I should share some of our latest experiences/photo galleries….  Also need to remind family and friends about the IL Families of SMA Walk and Roll on June 10th.  We are looking for team members (so far its ONLY our immediate family registered and 4 donations in honor of Ally).   The “Walk and Roll” for Families of SMA is on June 10, 2012. We will be doing a 2.5 mile walk at Independence Grove in Libertyville, IL. The walk begins at 10:30 am (registration at 8:30 am) with events and fun before and after the walk. Please consider joining the Ally’s Angels Team as it is always nice to see friends and family come together for a special cause. You can even meet some of Ally’s other SMA friends. If you cannot join us, please consider making a donation in honor of Ally. We have a personal webpage

(http://www.fsma.org/LWC/Ally)

or you can give it to a family member. Checks are payable to FSMA. Remember, every $1 brings us one step closer to a CURE!

2012-05 Magnificent May

2012-04-24 Melissa 8th Bday

2012-04-24 Kdg Field Trip to the Shedd Aquarium

2012-04 AMAZING April and Easter

PS — Thanks for taking time to read my blog and maybe check out some pics.  We LOVE when you leave comments or say hello and even share about what you and your family have been up to.  Now that the weather is warmer, maybe we can see some of you soon!!!!    Tina and Family

4-17-12 NEED help and TEAM Members – Walk and Roll for Families of SMA coming in June!!!!

Hello Friends and Family,

We are looking for your help and support! As many of you know, our youngest daughter, Ally Krajewski has Spinal Muscular Atrophy Type 1. Overall she is doing well and continues to beat the odds staked against her. She is now SIX years old and attends kindergarten on most days (otherwise has a teacher come to our home). Ally is learning to talk by operating a special computer with her eyes and is beginning to drive a loaner power wheelchair. Since she got her trach (breathing tube) in July 2011, she has stayed healthy and out of the hospital except for surgery for a hip fracture in Sept. 2011 (knock on wood). We continue to focus on enriching Ally’s life and praying that a CURE or treatment for SMA can happen in her lifetime. Medical advances in SMA have been amazing and this really could happen with funding and awareness.

Each year, our family does 2 fundraising walks (one for Families of SMA and one for Muscular Dystrophy Association). Occasionally family and friends make donations to the Angel Allyson Fund NFP to directly help with Ally’s uncovered needs and special things to enrich her life. I can not thank you enough for all of your emotional support and prayers (which are most important). Many of you have donated in the past and should not feel obligated to donate every time. However, if you are interested in making even a $5 donation, it REALLY does help as we work towards a CURE and support for the kids fighting SMA each day.

Our upcoming fundraiser is the “Walk and Roll” for Families of SMA on June 10, 2012. We will be doing a 2.5 mile walk at Independence Grove in Libertyville, IL. The walk begins at 10:30 am (registration at 8:30 am) with events and fun before and after the walk. Please consider joining the Ally’s Angels Team as it is always nice to see friends and family come together for a special cause. You can even meet some of Ally’s other SMA friends. If you cannot join us, please consider making a donation in honor of Ally. We have a personal webpage (http://www.fsma.org/LWC/Ally) or you can give it to a family member. Checks are payable to FSMA. Remember, every $1 brings us one step closer to a CURE!

Families of Spinal Muscular Atrophy is an important charity to us because: – One in 6,000 babies born this year will be diagnosed with SMA; – They support all those affected by SMA with critical information, resources and equipment; – Research funded by this amazing organization is providing HOPE for the development of a treatment and cure.

SMA is a devastating genetic disease that destroys the nerves that control voluntary movement. Children born with SMA may never crawl, walk, or even lift their head. Families who live with SMA turn to Families of Spinal Muscular Atrophy for information, guidance, encouragement and most importantly; HOPE.

Making a donation to Families of SMA is easy, secure and completely confidential. Just click on the link and follow the steps! http://www.fsma.org/LWC/Ally

To Join Ally’s Angel’s Team — contact Tina Krajewski 773-283-7211 or email tina@angelally.com (you can also sign up online)

Thank you for joining me in my quest to support Families of SMA. Your tax-deductible gift will bring us one step closer to creating a world where Spinal Muscular Atrophy is treatable and curable.

PS – To see what Ally’s been up to, check out our blog at www.angelally.com. There is a link on this site to our picasa website that includes MANY pics and videos too.

PSS — Also in GREAT need of donations for our raffle (Tickets, gift certificates, prizes… or walk sponsors donating $250 or more to be on official walk t-shirt). Contact Tina or Janet if you can help!!! Janet Schoenborn at (847) 373-3762 or illinois@fsma.org, Tina Krajewski at (773)283-7211 or tina@angelally.com

3-31-12 NEW PUPPY and MDA Firefighter Bootcamp

March continues to be pretty MARVELOUS!!!!  The crazy mixed warm/hot/cold weather is still causing some havoc on Ally’s breathing here and there (with thicker mucus plugs, then dryness… and maybe allergies), but she is a strong/brave girl and we get through those tougher episodes and celebrate each easier moment and JOY that many of our days bring us.

We have been able to go to school more and look forward to even more school time after Spring Break!  Ally and her sisters will have the next week off and will return after Easter.  No big plans, but hopefully we will have a good time around the Chicago area.

The most exciting news this month is that we got a NEW PUPPY!!!!!  Her name is Mia and she is 3 months old.  We’ve wanted a puppy for Ally and her sister for a SUPER long time and my mom (whom we share a home with and has her own dog) finally agreed.  I did a little surveying of other SMA families and knew we wanted a mixture of  two small breeds (possibly maltese, poodle, yorkshire, shitzu, bishon…). I looked into possibly rescuing a puppy/dog under 2 years old, but because of our unique needs and not wanting to wait too long (the older girls and Billy were super anxious), we found a great puppy store, Happiness is Pets in Lombard.  Mia was an investment (using part of our tax return), but we are super, super, super excited  and happy!!!!!  She is kind and will lay by Ally and lick her gently and she will play around with the older girls too.  Mia will even hang out and watch tv on Ally’s bed while we are doing breathing treatments with her loud respiratory machines.  Puppy (and kid training) is going to be a little stressful for the next few months, but I am positive it will be worthwhile.  We are ALL in love with our new family member!!!!

Click on the album cover to see ALL of our Puppy Pics….

2012-03-24 Puppy Shopping & MIA

Another FUN event this month was the Muscular Dystrophy Association Firefighter Bootcamp!  Ally, nurse Paula and I attended an overnight stay at Eaglewood Resort in Itasca.  We got to hang out and bowl with our MDA friends, firefighters and other families.  We also attended a couple of meetings, a family Boot Drive workshop and had some GREAT food.  This is in preparation for the firefighters going out with their boots on corners to raise $$$$ for MDA (working towards awareness, support, medical clinics and eventually a CURE).  One of the best parts of our overnight stay was getting to sleep in bed with Ally!!!!  I LOVED cuddling up to her and it is a  goal to eventually expand her room (by taking down a wall) and get her a bigger bed to hang out with family members.  She also needs more room for all of her things (medical, therapy, clothes, stuffed animals, computers….).  Speaking of things, you should have seen HOW MUCH we needed to bring to the hotel to stay ONE night.  It was only Ally, her nurse and I and the back of the van was overflowing to  the middle.  Another goal is to get a new, bigger handicap van in the semi near future.  A Dodge Sprinter would allow us to bring all of Ally’s (and our family’s) things, Ally’s medical stroller, a powerchair and have room for our family and nurse when we do fun events or a vacation (maybe even Disney World one day). I always have BIG dreams for Ally and our family. It may sound crazy since we are a one income home and we budget our needs, but they are dreams that may be possible at some point.  I need to have dreams as we will always give Ally and her sisters the best experiences and lives possible.  I will keep working towards these dreams for all of us.

Check out our MDA Firefighter Bootcamp Pics (click on cover to see all)

2012-03-30 MDA Firefighter Boot Camp

I continue to add random, fun pics to our Marvelous March album too…

2012-03 Marvelous March

Thanks again to everyone for reading my updates and for all of your support and prayers!!!
Tina

3-21-12 Ally gets haircut and donates to Locks of Love!!!! and Marvelous March!

3-21-12 Ally ready for school with her new hair-do!

 

Yesterday was the day!!!! Ally got 16 inches of hair cut off to donate to Locks of Love!!!! My angel is helping other children and has a cool new hair-do! Today and yesterday, it was styled straight and soon, we’ll post a pic of it curly. A HUGE thanks to Stylist Carolina and Silk Style Lounge!!!  Also a BIG, BIG thanks to RN Lucy who helped support Ally’s head throughout the whole haircut.

See all of the hair-cut pics by clicking on this album cover…

2012-03-20 Ally haircut for Locks of Love

We’ve also been enjoying this amazing, warm weather!  It does cause a little extra respiratory problems for Ally (and others), but with her trach and some extra suctioning and treatments here and there, she is doing well.  We are now going to school 2-4 days a week of full day kindergarten.  Ally goes 2 days alone with RN Lucy (on a private bus) and the other days with LPN Paula and Me.  We are in the process of trying to switch nursing agencies, so this will change soon.

March has been the HUGE Shamrock Sales for the Muscular Dystrophy Association (which help to pay for kids to go to Summer Camp and also equipment upgrades and repairs).  This month, Ally got a new size 2 EASyS Modular Seat thanks to the MDA.  For St. Pat’s Day,  we have a great big family dinner (even though only Billy and the girls are a little Irish).  Ally and I also got to go to a Disney Princess Show this month.  Busy, Busy, Busy…

Check out all our March pics by clicking on the album cover below…

2012-03 Marvelous March

Send an email or make a comment on Ally’s website to let us know you visited or read our update.  We LOVE hearing from friends and family!!!!

2-17-12 Ally update and some February pics

3e LOVE shirt and Fight Like a Girl trach tie -- Ally 2-17-12

 

 

8:30 pm — Just wanted to share some of our pics for the start of February on our picasa site… Ally is recovering, but we did an xray and culture today since she was wheezy and had a couple of desats. Xray was good and doc will call soon with RSV swab results. She is overall having a good evening , we plan to go to 2 VERY special Birthdays this weekend (as long as her “good” status continues)

9 pm – RSV is negative and really she is improving a TON, but wanted to be sure since she had some new signs today. We stopped bactrim and started omnicef and tobi nebs instead.

CLICK on album cover to see ALL the pics..

2012-02 Fabulous February

2-14-12 11am Tiny Update — Ally :)

Ally's at Hanson Park Kdg - with AMAZING aide Ms. Janet

 

Ally had a great night and good morning, except for her nights and days being confused (for sleeping). She is going to take a nap now and we get to stop by school at 1:30 for her Valentines Party!!!! We will be cautious with germs, but so happy she gets to see her friends and teachers today. We made some special gifts

Happy Valentines to Everyone!

Happy Birthday to Ms. Janet!!!!!  She is Ally’s EXTRAORDINARY one-on-one aide at school.

 

2-14-12 1:30 am — Ally’s Monday Update // Happy Valentine’s Day!

Well, Monday was a little rougher for Ally than I expected.  She made sooo many strides on Sunday towards better health, that I was hopeful we could maybe keep our orthotics appointment to get new therapy shoes and maybe go to Shriners.  I figured I’d let Ally lead the way if we were going or not, and she made it CLEAR we were staying HOME.   Unfortunately Ally threw up 3 times on Monday and her low grade fever stayed constant most of the day.  She enjoyed watching her cartoons, but was very flush and working harder, so we took it easy and our new nurse helped do some extra breathing treatments.  I also simplified her food mixture and slowed down her feeds some more.

By the evening, Ally began to turn the corner again, for the better.  Megan, our 1x a week overnight nurse, came in and Ally has done very well for her.  I’m sure a lot of it is the hard work and prayers paying off.  Ally was able to tolerate doing 2 full breathing treatments, including her shaky vest without throwing up and her heart rate stayed down.  She even painted a little with Megan and then fell asleep.  It’s 1 am and she is sleeping peacefully.  Her heart rate is not back to its complete norm, but fevers are gone (knock on wood).  Oxygen sats are also staying good without using any.

Doctor update – I talked with a Nurse Practitioner of Ally’s pulmonologist Monday morning to update them on our EXCITING weekend.  They had some notes, but I gave more details and asked if we could have permission and orders for the higher vent settings.  I also volunteered to bring her into the clinic if needed to allow these new orders to go through, but he was already overbooked.  He must have been sooooooooooo busy since we NEVER got a call back.  He knew Ally was stable, so must have needed to focus on some sicker kiddos.  I did call in the early evening and talked to the on call pulmo to see if there were any updates and ask for official higher vent settings.  We were given a verbal okay to keep them set at my “Mommy” changes till at least the morning : )

So for Tuesday, Valentines Day — We will be overall keeping it low key.  We may pop by school to deliver Valentines to the kindergarten and a birthday gift for Ally’s AMAZING 1-on-1 classroom aide, Ms. Janet.  Ally will lead us in making that decision though.  Billy already had the girls and my Valentines delivered.  Yummy – chocolate covered strawberries!!!  I’m trying not to be upset about how much they cost and focus on how thoughtful he was (LOL). Maybe I will make a special dinner for us?!

Happy Valentines to Everyone!!!

Thank you again for your prayers and support!