Ally will be celebrating another MIRACLE Birthday on February 2nd, also known as Groundhog’s Day. On her real birthday, we will be going to Disney on Ice with godmother Auntie Tammy, John Reno, Melissa, RN Maribel and I. It is going to be amazing. Trying to get special seats at the Allstate Arena or a short meet and greet with a princess, but won’t find out till Tuesday afternoon. Keep your fingers crossed.
I have decided that I am going to do a mini, simple Birthday for Ally. She deserves it!!!! Even though, we will be having a BIG party every August for her 1/2 Birthday (when there are less germs), I think with all that she goes through, she deserves TWO parties.
ALL HEALTHY Family and Friends are Invited!!!
(Please let me know asap if you plan on joining us, so I can plan. Sorry for the late notice.)
What: Ally’s 4th Birthday Party
When: Saturday, February 6th at 2 pm (pizza, salad and cake served at about 3 pm)
Where: Ally’s Home – 3614 N. New England – Chicago, IL 60634
(can’t come, feel free to send a quick card for Ally to open)
Who: Any family and friends that would love to celebrate Ally’s special day with us. You MUST be healthy though. Sorry, we can’t risk any germs at all. Even if you have a cough, stay home or I can supply a mask.
Optional: Guests are invited to bring a simple appetizer or dessert to add to the yummies. This is not required at all. Please let Tina know if you’d like to make/bring something. Thanks in advance.
Gift Ideas: Ally is a girly girl. She enjoys crafts and DVDs. We LOVE new dresses with matching tights, hair things, accessories. She wears size 5/6 dresses and shirts, size 4/5 pants, shoes size 6 toddler. Please, no hoods since she mostly lays down. We are also beginning to save for some special BIG, DREAM items for her – suspension sling system to play ($300-$500), possibly a wheelchair joystick ($4,000), maybe some things for her hot tub and a new tray for her size 2 stroller/wheelchair. Donations can be made to Angel Allyson Fund NFP.
RSVP: Please try to RSVP by Wednesday 2-3-10 so we can plan ahead, but last minute guests are welcome. Home # 773-283-7211, Email – tina@angelally.com
I need to start with a huge THANKS for the prayers and well wishes. Thank you! Thank you! Thank you family and friends!!! Without all of your support, I would never be able to make it through all of this. And also without God and all the angels, I couldn’t get through each day without checking myself into the funny farm.
So, I have still been up since 12 midnight Friday and it is almost 11 pm Saturday, so about 24 hours straight awake and sick. But, I will TRY to go to bed after typing this post. It’s soooooo strange, I am not tired and still mentally full of positive energy to get things accomplished. I know I need to rest my body, but my mind won’t slow down. Would love to have a drink or take a sleeping pill, but Billy does not hear alarms at night and I need to be sure that Ally stays safe.
Long sumary of my day….
Ally woke up at about 7 am when I was going to lay down. Wearing a mask and gloves, I changed her diaper, gave meds and suctioned her a little. I also put on her DVDs and then got out of the room as quick as possible.
The “lovely” doc I saw on Friday never returned my emergency call last night, so I decided to have my mom drive me to the Walgreens Clinic to have tests ran to see what I really have. Ally’s pulmonary team at Childrens strongly recommended this so we could know what I’m dealing with and treat Ally pro-actively with tamiflu or whatever needed. She is doing REALLy well still, actually above her baseline, but we all know there is a very good chance she was exposed to this bug before I even showed signs of being contagious. I am very pleased with how well the fellow pulmo at Childrens and the attending care about Ally and how much they are on top of this.
We woke up Billy at around 9 am and headed 15 minutes away to the clinic. Unfortunately there was going to be about a 90 minute wait with only 2 or 3 patients ahead of me, so we decided to run to Childrens Place kid store which was across the parking lot. Got some absolutely amazing deals off their clearance racks and some spring sweaters for Ally, which are always difficult to find. No dresses for her birthday though. I spent WAY too much $$$ (please don’t tell Billy I even went shopping), but I was paying $3.99 for items regularly priced $20 or more. We really didn’t have the money to spend, but a bill or two can wait an extra week.
We still had about 30-45 minutes to spare, so decided to go to the nearby post office to mail 2 boxes worth of medical supplies and goodies to a special family in IA. The line at the post office was super, super long, and I started to get hot, dizzy and sneezy, but it was worth it to help out another family who pays out of pocket for some items I have extras of. Most of the people at the post office were super friendly, which was nice. One person in line was super rude, but the others were nice and good entertainment.
After the post office, I decided that I really did NOT want to spend $80-$100 at Walgreens for an exam and tests. We are struggling this month and Ally hasn’t shown any signs of illness, so I thought it would be okay. Also had spend the $$$ on better things/clothes for the girls. We did not return to Walgreens Clinic. Our next stop was Staples to buy Turbo Tax (need our refund now), some office supplies, and I gave them my old laptop for a FREE exam and tune up. The employees there were angels and so helpful.
When I got home, the Pulmonologist from Childrens called to check on Ally and me. This is VERY impressive!!!! I think his name is Dr. Kumba. He was concerned that I didn’t get tested but understood. He and the attending, Dr. Nevan, decided it was probably best to start Ally on tamiflu. He also encouraged me to call the doc I saw again to at least get tamiflu for myself. This time, my “new” doc called back, but I must say, he was an absolutely A$$hole!!!!! He was very arrogant and said he doesn’t believe in the rapid tests, he thought I would be fine with just the antibiotic and he was POSITIVE I don’t have a flu or H1N1. I got snippy with him, telling him that there is no way to know that and these are the exact signs I had in June, when Ally and I had H1N1. He refused to prescribe me tamiflu too. I got nastier and he caved. Then I hung up quickly. I will have a new doctor group on Monday and don’t need to deal with him anymore. Thank God for the fact that I was allowed to switch as of the 1st of each month, with our HMO.
Kristyn needed a ride to her friends and had to get two new books from her new favorite teen series at Borders, so my mom agreed to drive us there and to Walgreens. I also found a food swap book that I really like to make better choices for me and the kids. The script wasn’t ready yet, since Ally’s was a compound. My mom had a craving for Chinese food (and neither of us had eaten all day) so we went and picked some yummies up. Then the scripts for tamiflu for Ally and I were ready and we could go home and eat.
Since then, I have been busy on the computer and doing stuff around the house. Gotta get it done while I have the energy. Also had a great conversation with another muscular dystrophy mom. At 10:30 pm, I decided to soak in the hot tub to relax before taking an amazing shower. Thanks again Make a Wish and CRASH of Chicago. I really needed it and switched to all three seats for water massages. Took my shower, doing my blog, and will probably have a piece of Bakers Square pie before bed. I know that is a “bad, unhealthy” choice, but I deserve it.
Billy and my mom did a wonderful job with Ally today. Billy also drove 10 teens to and from Laser Quest tonight to help out one of Kristyn’s friends for her 14th b-day. Luckily, we have our big, handicap van. I have barely seen Ally today, and I miss her smell and hugs soooo much. She looks at me, like “why are you ignoring me? I need you to play with me mommy!” I’ve explained to her that I am too sick to touch her without gloves and a mask. She’s alseep for the night and still no signs of illness (knock on wood).
Hope you enjoyed my little story/journal.
Off to get my pie and then some ZZZZZs.
Thank you again for your prayers and support,
Tina, Ally and Krajewski Family
PS – My sister Tammy went shopping today at the Disney store and got Ally an amazing princess dress for her birthday. She bought her tons of other goodies too. So we are all set. Thank you to those who offered to help.
PSS – I WILL be having a small birthday party for Ally on Saturday 2-6-10 at 2 pm. It will just be pizza, salad and cake. We want as many friends and family possible to attend. If you are reading this blog, you are welcome to come (if you live nearby of course). Ally really doesn’t need any presents, cards are fine, or I’ll shoot out some ideas soon. Guests are invited to bring a dessert or appetizer, only if they’d like. PLEASE, Please let me know if you’d like to joing us. Only germless guests are allowed. I will have on my mask if still sick, but it BETTER be BETTER by then.
I know this is a blog mostly about Ally, but I also use it as a journal for some of my feelings and to let everyone know what’s going on with our family. If you are on facebook and my “friend”, you already know that I am very sick (possibly strep, h1n1, RSV…). I’m also excited, but now scared, and an emotional wreck, as we approach Ally’s 4 year old birthday in only 3 more days – Tuesday, February 2nd. This is HUGE for her since most type 1 SMA children are never able to see their 1st or 2nd birthday here on earth. I am so grateful that we’ve been blessed with 4 years so far and pray for many, many, many more years as a CURE for SMA is becoming closer to a reality. But I also know that even this illness, that I have, could be the one that could send Ally to heaven. I know God is in control and has made the plan, but I’m so scared. I know if Ally gets this, she WILL end up in the hospital, probably intubated and she doesn’t deserve to suffer. She is one fighter and amazes me constantly, but I want her happy and healthy. My vow is that I plan to do everything to help Ally when well and sick, and when it is her time to be in heaven, God will grant her wings to be an angel there. I’m also kinda pissed at me and the hospital right now since there is definitely a chance that I caught this bug while at the hospital to switch Ally’s breathing machine last week. I still think it was wise to switch breathing machines, but was a 3 night hospital stay REALLY needed or the best choice? I was very, very careful, but had to use the bathroom and also had to talk to others while coordinating Ally’s switch. I haven’t been anywhere else for a week, except to pick up Melissa (outside) from school and to the movies on Wednesday. We were the only ones there and my sore throat was already beginning. We do have two older girls in school, teachers and nurses who come here, and Billy goes to work, but no one else has been sick like this, unless a germ was carried to me and the carrier wasn’t sick yet. Ohhhhhhh, it’s so frustrating, but I must stay positive and keep praying.
I’ll repost some of my facebook entries to make it easier to share my thoughts and catch others up….
1-23-10 Thank you to everyone who voted in Chase’s Community Giveaway. The Gwendolyn Strong foundation came in at 6th place and won $100,000 to help cure SMA. Tons of awareness was also spread with over 50,000 voters. Thanks ; )
1-29-10 (started very early am) Think “I” might have strep throat. Fevers and severe throat all day, but Advil and Tylenol cold helped a little. Have been wearing a mask and gloves when near Ally, but no nursing help till Monday. Help, this really sucks, I mean stinks!
Ally is doing well, but I kept her on bi-pap and in her room ALL day since I can only very limited care for her, while I wear a mask, gloves and sanitize. The older girls have very tiny colds, but even that can be dangerous too Ally. I am especially dangerous to her.
What’s strange is that I have a lot of positive mental energy to make tons of phone calls and get work done today. I’ve been in a slump, and somehow it was lifted while I got very sick. Maybe it helped to help some other sma families by phone and computer today and yesterday. Phone calls included trying to switch our pre-assigned HMO doctor and hospital, so I can get an appointment and maybe an antibiotic, BUT it can’t be switched till Monday Feb 1st and otherwise I have been assigned to St. Josephs which is downtown Chicago, and again NO nursing till Monday.
I don’t have a doc I can go to near me, but maybe my old one (who took our old insurance) would call something in for me. I’m tempted to call the on call person there and see if I can go to a 24 hour pharmacy. I need to kick this quick.
5 am – Been up for 22 hours straight and I’m not really tired. I’m sick with some type of cold/fever, maybe strep, but have TONS of good mental energy to get things accomplished and conquer the world. I hate my ups and downs, but love when my mind is “up”.
Getting things accomplished that I’ve put off for about 3 weeks or more —– dealing with the DME, finding a new doc and switching my HMO, renewing handicap placard, editing Ally’s IEP and getting my letter of dissent ready to fight CPS, organizing nursing schedule, application for spring sma family weekend, and so much more. You should see my “to do” list.
4 pm – The doc said I could possibly have strep or some other gram-negative bacteria problem, don’t remember the name. He said docs rarely use the strep test anymore since he wouldn’t get the results till Monday, so he started me on an antibiotic, clarithromicyn or something. Still awake since yesterday morning, but plan to nap soon.
Not sure why he wouldn’t do a rapid test, but I was just soooo happy to be getting some medicine. My mom helped out a ton with Ally today and we had a volunteer to play with Melissa and Ally from Palliative care. Thank god and the angels for making things work out.
7 pm – I’m getting sicker by the minute. I thought medicine was suppose to help. Now I have a hacking cough, more chills and I’m nauseus. Feels like h1n1 or RSV or something really bad. Please say a couple of prayers that Ally doesn’t get sick since she turns 4 in 4 days and that I get better really soon, so that I can take better care of her.
This afternoon, I began to “try” to make special arrangements for Disney on Ice on Tuesday 2-2 for Ally’s 4th b-day. It will be confirmed, on TUESDAY if they are able to get us better than balcony handicap seats at the Allstate Arena. Please pray for our family to ALL be healthy by then and that it comes through.
8 pm – Continue to be getting sicker by the minute. I’m even tempted to go to an emergency clinic to get swabbed for RSV or H1N1 now. I don’t know why the doc didn’t do a swab and I wasn’t too worried until I started getting sicker. It better pass quick.
1-30-10 –12 am – Up from my 5 hour nap since my meds were wearing off and the coughing phase is getting bad. Now its midnight and I’m a wide awake sick person. Time to get to work on Ally and bill stuff. Plan to go back to the doc or Walgreens Clinic in the morning for swabs/cultures. A huge thanks to my mom and Billy for helping with Ally. I’ve had to do a little with her with mask and gloves, but I MISS HER soooo much.
I am praying to God – please NO hospitalizations for her or I and no spreading of this illness. She will now be 4 years old in 3 days and I’ve been crying since any illness could be fatal at anytime. She is doing well, I’m just emotional and venting to the world.
Ally's 3rd b-day - last year
2 am – Need to get Ally the prettiest 4 year old birthday dress EVER. Especially since if I’m well enough, we are going to the opening show of Disney on Ice on her actual b-day, Tuesday Feb 2nd. Not sure if I am going to be able to make it to the store. Anyone able to shop for me and I WILL PAY? She wears size 5 or 6 in dress, 5 is probably best.
This was her 3 year old b-day that we just had cake at home. This year the plan is Disney on Ice with godmother Auntie Tammy, John Reno, RN Maribel, Ally, Melissa, me and maybe grandma Carol. We will have a small cake at home Tuesday too. I “might” do cake at our house and/or bowling get together next weekend, but not sure with illnesses and germs. I’ll let everyone know if we invite family and some friends.
If you would like to send Ally a card, here’s our address —
Allyson Krajewski
3614 N. New England
Chicago, IL 60634
Now, your all caught up – if you weren’t already. Wish there was a way to link this blog and facebook , but not sure how. I try my best to post in both.
Want to share one more thing…
Here is a beautiful video that Barb Zahn created, in honor of her daughter Lucy. Ally’s not in it, but many of her friends are. It is a great intro to sma and was created to use at a fundraiser…
Ally and I are home from our planned 3 night hospital stay to switch breathing machines. Things went smoothly and we are happy to be home. She is doing well, but we will finish off our antibiotic. A HUGE thanks for everyone’s prayers and also to Childrens Memorial staff.
Click on the below album covers to see Ally’s new machine and sleep study pics
As planned, Monday we admitted Ally at Childrens Memorial to transition her to a new breathing machine (trilogy) for her to use at night, for breaks and when she is sick. The goal is 3 nights and get home as quick as possible before catching any germs. So far things are going VERY smoothly and the hospital staff has worked very hard to make this transition go easily with the least amount of stress as possible. I’ve been staying glued to the room away from the germs.
So far, Ally seems to be doing well on the Trilogy and we will be doing her sleep study tonight to see what settings should be tweaked. She is getting two machines, so they want her to spend time on both. Hopefully we will be heading home on Thursday.
Favor – if you are on facebook, PLEASE PLEASE PLEASE take a moment to vote in Chase’s Community Giving to help find a Cure for SMA. Details below…
Subject: PLEASE VOTE FOR SMA RESEARCH TODAY!
SMA research has an incredible opportunity, but WE NEED YOUR HELP! It’s fast, free + could change the lives of the thousands of children!!
The Chase Giving Facebook race is a close one. The Gwendolyn Strong Foundation is neck in neck for a spot in the top six — and a chance for a monetary prize. WE NEED YOUR HELP! Because you can only vote for GSF ONE TIME — every single vote is critical!!!
This is an incredible movement. There is enormous passion behind GSF and getting SMA the funding it needs. Thousands of people have come together to fight this cruel disease and give children dying of SMA the future they so deserve.
Please keep rallying for us + for SMA — voting ends Friday. Be part of a MIRACLE today!
SMA FACTS:
SMA kills more children than any other inherited disease.
SMA is degenerative + terminal.
1 in 40 people unknowingly carry the SMA gene; few have any family history.
There is currently NO treatment or cure, but there is HOPE!
The NIH named SMA as the “disease closest to treatment” — if given funding.
Ally is doing better, but not 100%. Still some fevers off and on, but they are controllable with motrin and tylenol. Extra time on her bi-pap breathing machine and some extra treatments have helped a ton. She is actually in good spirits and enjoying her movies and her homebound school time too.
Plan is to still go the hospital on Monday to switch her machine, sleep study… It’s not a surgery, just making sure we have all the right settings for her new machine. Gotta make sure they aren’t too full still. It can change easily at this time of the year. I’ll keep everyone posted as I can.
Meeting at school was kinda crappy, as I thought it would be. She will only have consultative PT and OT when homebound, but they will be coming out to help directly at the beginning of this quarter and as needed. I feel that the school should be providing more to meet Ally’s independent functioning goals, but they are not including them in her new homebound IEP (which is more limited than a school plan). I’m aggravated, but I will see how things go for now and research more into the laws as I have time and energy. Seems like tons of other SMA kids get these services from the school in other states, but Chicago and IL are not doing it (at least not much). For now, I need to focus on the positives that we have with the school — excellent homebound and school teacher, great homebound speech pathologist, help from the assistive technology department and tons of support staff that do care about Ally. Since her homebound teacher is so great, her and I will do our best to help Ally and she works at the same school as the therapists, so she can talk with them often. I’ll also work more with the nurses to be sure we are doing stander, wheelchair, computer and swtiches as often as possible. They are willing, but it often takes two people and I need to be sure we are all comfortable and knowledgeable so Ally stays safe. I’m still getting more comfortable with Ally’s tlso and positioning in her stander and wheelchair, plus the wheelchair still needs adjustments, a better controler, or even better her own. We’ll make it all work and I won’t give up on being sure Ally gets what she deserves and needs to have the best life possible.
I’m a bit exhausted mentally and physically, but I’ll regain my energy.
It’s worth all the trials for Ally and our family. I’ll need to write a little more about Melissa and Kristyn too soon.
Thanks again for your support and also prayers,
Tina, Ally and Family
2pm – Ally is having some trouble again, after having a wonderful day yesterday. No fever, no thick or colored secretions, but she sounds junky and not a lot of movement on her left side. We are doing lots of treatments and bleeding in some 02 for now. I also called the hospital to let them know that we might need to bring her in if we don’t see impovement.
6 pm – The nurses (at our home) did a great job with Ally today. Lucy was training our brand new nurse Megan (who is from Childrens). Even though Ally was having trouble, she didn’t scare Megan off and it was really good experience for her. They did three respiratory treatments together and I mostly rested to prepare for what may lie ahead (lots of nighttime treatments and/or hospital). I’m having severe back pain and then I had my second part of my root canal finished this afternoon (gotta take care of myself while I have help and Ally was stable enough). It’s so nice to have great nurses (even if it is only 2-3 days total each week). Hoping this will improve soon, need to recuit 1-2 more nurses. Bad news – Ally did start a fever of 100, but it is back down. Good news – she is off of supplemental o2. So hopefully if I stay on top of treatments we can continue to beat this at home. Still planning to go next week to switch her night breathing machine, if we don’t end up there sooner. Praying hard to God and all the angels to look over Ally.
I’ll update more as I can.
Thanks again for all your prayers and well wishes.
Tina, Ally and Family
Several people have asked how Ally is or may be wondering. Thanks for asking. She is doing amazingly better. Still extra bi-pap time, but back to only 2-3 treatments a day and fevers finally stopped today, I think. I actually haven’t checked since this morning. Also on an antibiotic. My baby is sooo strong and God is good. Thanks for the prayers.
She did wonderful with her Art teacher and her school teacher (at home) today. She used her switch to create spin art Valentine decorations and tiny paint squares. Then during school time, she was amazing on her computer using her eyes to tell colors, shapes, “turn the page”, her name…. I’m so lucky to have great people working with her.
Don’t think I mentioned it yet. I have her IEP school meeting this Thursday at 8:30 am to make her plan for the next year. I was looking forward to this meeting, but I’m very nervous and worried now. They are going to try to change her PT and OT homebound services to consultative. This means, she will not have a therapist working directly with her to help her with her powerchair, standing in her stander, using switches to communicate… unless I bring her to school. I will be working hard to advocate to keep these services when she is home (mostly November – April and when sick or the school is too germy). Gotta talk to a lawyer again about the laws and responsibilities of the school. I also might consider bringing her to school 1-2 times a week asap if they are legally not responsible to provide in the home. Then, they will be helping with nursing, busing, and sooooo much more. I am only trying to give Ally the best life possible. She deserves to learn and be as independent as possible, just like an other 3/4 year old (whether she is home or going to school daily). Also need to explore options for when we are in school that include the least restrictive environment. She is in a self-contained special ed classroom with wonderful teachers, but I’d love for her to spend time in the blended classroom too. It will be a long meeting, most likely 8:30-12:30 and reconviene if needed. So much fun, but worth it for my angel.
Gotta go. I’ll try to update again soon.
If you haven’t seen this video yet, please take a couple of minutes to learn a little more about SMA and the children affected by it. Thanks ; )
Prayers needed. Ally started to have trouble yesterday (after doing an amazing job driving her powerchair for 1/2 hour and in her stander for 1 1/2 hours). I think we moved something around that was starting to brew since she had a big desat to 40 when I was moving her from her stander to lay down. We had to use some o2 overnight and start extra breathing treatments. I will be getting a cipro antibiotic in a little while. She is doing better with no o2, but fevers up to 102 and creamy yellow/green secretions now. Sorry for the yucky visual. Hope to be able to handle this at home, but will go in to the hospital if she has bigger drops and her left lung goes down. For now, Billy and I will be doing treatment every 2-4 hours and watching her carefully. She is in good spirits today, but was exhausted and working too hard last night.
Our new tentative date for our planned hospital stay is Monday, January 18 – Thursday, January 21st. We will be switching to the trilogy vent/bi-pap to offer Ally more support for when she is sleeping and if she gets sick. There are tons of pros to make this breathing machine switch. We will also be getting two trilogies since when sick Ally is bi-pap dependent 24/7. They want her to spend 24 hours on each machine before going home to be sure everything is working properly. Hopefully, we won’t have to go to the hospital before then. It is still full and lots of big germs going around.
Thanks again for your prayers and well wishes,
Tina, Ally and Family
——-
Update at 6 pm 1/9/10 (from my Facebook)
Thanks so much for the prayers for Ally. She is doing okay for now. We are doing treatments every 4 hours since she is holding her sats between without any o2 at all and we aren’t getting as much gunk out and she still has lots of air movement in her lungs. We started cipro antibiotic. I got a 4 hour nap and woke up to Billy begging for help for a poopy diaper that went all over and her refluxing a little. At least he is helping some.
Had plans to go out with good friends tonight (never do that, or VERY rarely) but had to cancel. Billy’s helping, but he can’t hold the fort when Ally’s sick. I also wouldn’t let him hang out with friends if she was having trouble, so I’ll be okay. Gotta look out for Ally, as that’s most important.
Just heard from Childrens Memorial. They are still in the “red zone” which means they are not even accepting patients from other hospitals, so we have cancelled our “reservation” for this week. We are tenatively looking at admitting Ally on Jan 20th or 27th for three nights to switch to the Trilogy vent/bi-pap. Praying she stays healthy.
Also sending out prayers to all the children and adults not well and/or in the hospital this week. And sending prayers to families who’s angels are now in heaven. Unfortunately two SMA children went to heaven that I know about in the last 2 weeks. I know that God is taking good care of them, but my heart goes out to their family and friends. A cure and treatment needs to be found for SMA.
On a happier note, please be sure to check out some great pics in on our picasa website. Link in the right column of Ally’s site and/or click on photo album covers in older blog posts.
Thanks for your prayers and thoughts,
Tina, Ally and Family
Angel Ally Blog - SMA Type 1 