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!

2-13-12 Monday 5 am Ally update :)

2012-01-30 Mommy and Ally cuddling

5 am update — Miss Ally woke me up at 3 am making some noises for me to suction her and bright eyes for me to turn on the TV!  She went 7 hours between breathing treatments and did well with it.  While her nebulizer/IPV was going, I was able to organize her dresses and actually have an ENTIRE box of gorgeous dresses to pass along to a friend.  She is overall doing soooooo well and I think we will even go to her appointment for AFOs and stander.  Might even be able to do Valentines at school with her kindergarten friends on Tuesday.  YES, I might sound crazy, but these illnesses remind me that she/we need to live life to its fullest!!! Sooooo grateful to God, prayers from friends and family, and her trach!  My daughter is my HERO!!!  Also soooooo proud of my oldest girls, Kristyn and Melissa.  Kristyn’s cheerleading team competed at State on Saturday and did not place, but did well.  Melissa has been doing well playing with our neighbor and behaving the last few days during the scary illness part.  I LOVE my hubby dearly who has helped me GREATLY this whole past weekend too.

2-12-12 Ally Update – Sunday 6:30 am and 8 pm

 Well (With MY appropriate vent setting changes) Ally slept from about midnight till 5 am with NO desats or alarms. So she went 6 hours without a breathing  treatment, and I got a little sleep too.  Billy slept too, as he was helpful during the day with Ally and cleaning.  The 5 am treatment was a little rougher, starting with a small clear throw up with the 1st suction, and a few chunks of mucus, but she Ally only desated to 80s and came back up to 90s with NO oxygen needed (knock on wood and Thank God). For treatments we are IPVing with pulmazyme (or xopenex) to thin the creamy and off and on chunky secretions/mucus and also keep her lungs open. For those not in the medical world, an IPV is a fancy nebulizer type machine that sends bursts of air/nebs that kinda beats on her lungs from the inside to outside to break down the junk/mucus, while using saline or a medicated neb.  Since Ally cannot cough effectively or move, this is super important.  I then use another machine to cough and suction the mucus and secretions out, so hopefully it doesn’t become pneumonia, or completely block her airway. It all sounds crazy, but overall Ally is doing good and she was pretty HAPPY watching Jay Jay the Jet Plane during this morning’s treatment. It’s still so crazy that I have to worry about docs being mad that I changed the settings on MY daughter’s vent (breathing machine), but I want orders for when we have nurses (not till Monday and then a new one in training). The nurses will understand, and hopefully the only consequence will be is that they have to “report me” so there is no liabilty on them.  So far it all seems to be working and allowing us to treat this illness OUT of the hospital (knock on wood and Thank God again).        Thank you so much for the prayers and well wishes!!!!

8 PM Mini update – Talked to the pulmonary department at Childrens Memorial (3rd year fellow and he talked to an attending).  They understand what changes I made with Ally’s vent settings and are glad I let them know, but did not give absolute permission or get upset with me.  They did not give any orders for the changes since they want me to talk with Ally’s personal pulmo, but are hopeful that he will give her a sliding scale of settings we can use if she is sick before going to the ER.  Ally continues to do better. Her co2 numbers were awesome for the few hours I monitored her (32-38), which tells me 100% I did not put her in any danger. Treatments are only every 4-6 hours, with lots of mucus coming out, but stable between. Plan to talk to Ally’s pulmonologist (and hopefully not his APN) tomorrow morning so that we can maybe get something in writing for nurses.     Thanks again for the prayers and support.  They are working : )

2-11-12 10 pm — Prayers Needed for Ally

Need a few prayers for Ally, PLEASE… She started with a goopy eye and low grade fever yesterday, but now seems to be dealing with a BIG virus (fevers up to 102, vomiting, diarrhea, thicker/creamy mucus and desats to 80s). It has hit hard and really quick, but we are managing her care and breathing treatments at home. Thank GOD and also that she has a trach. Started an antibiotic this afternoon and made vent setting changes (without doc permission, but waiting on a call back from one since 4 pm). She is doing much, much better with my “mom” changes. Borrowing a co2 detector tomorrow from a friend to make sure the small changes I did on the vent are okay, but no more low tidal volume alarms and less desats to 80s. Ally is getting closer to mid 90s for o2, heartrate is down from 160s to 130s (100-120 is her norm awake). Just need to keep up with motrin/tylenol, new antibiotic, extra pedialyte in her food, breathing treatments and PRAYERS. My little/BIG 6 year old is a fighter!

- This is only her 2nd illness since her trach (1.5 years ago), but 2nd this winter. Frustrating since we have been active with 2 days of school last week and Disney on Ice, but I have no regrets. My little girl needs to experience life and LOVES being out of our home. Things are looking more upward this evening with my changes on her vent. Just can’t wait to tell the docs that I’m in charge and I know best. They only want to do vent changes in the picu, but I did try contacting our palliative care team and I will check her co2 tomorrow.

-  I did talk to pulmo and got the antibiotic, but haven’t heard back from Dr.  after talking to the palliative care APN. Really, they probably won’t want to give me permission for vent changes at home, but they ARE working. I changed them a little. Rate change from 18 to 20 breaths per minute. Pressure Control and Pressure Support both changed to 18 from 17/15 and peep changed to 6 from 5. She is breathing MUCH better now and maybe the antibiotic is kicking in. DO NOT want to deal with the PICU unless absolutely necessary.

I like a phrase one of my friends used.  ”Sometimes its better to ask for forgiveness, instead of permission” with our medically fragile children we are taking care of at home!

Photo Album from Ally’s SIXTH Birthday

Click on the link to our picasa photo album.  More pics will be added, as we are still celebrating.

An EXTRA special THANK YOU to the staff and children at Hanson Park School for making Ally’s day at school EXTRAORDINARY!!!  Also, a Thank You to Feld Entertainment for donating tickets to the Disney on Ice Show!

2012-02-02 Ally SIXTH Bday

Happy SIXTH Birthday to Ally!!!!!!

Happy SIXTH Birthday to my youngest daughter, Allyson Stephanie!!!!!

Ally is my angel on earth beating the odds every day and inspiring others to look at life, family, friendship, love, courage and faith more closely! Today we will celebrate with a special craft we are bringing to her kindergarten classroom (since Ally doesn’t eat by mouth) and then as a family we are going to Disney on Ice at the United Center. Thank you God for allowing me to celebrate another birthday with Ally!

I hope to post more later or soon, but wanted to post quickly that its Ally’s Birthday!  Once again, I have been behind on doing updates, but overall Ally is doing well.  You can check out our latest photo albums at … https://picasaweb.google.com/tina61775

More to come later…

 

 

10-24-11 FUN Weekend with other SMA Families – Rollerderby, Circus, Sleepover…

 

 

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

Ally’s Angels Team Needs your HELP – MDA Muscle Walk

Please consider joining the Ally’s Angels Team and/or donating to MDA in honor of Ally Krajewski.  Ally has type 1 SMA and is almost 6 years old.  

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