1-30-10 Mommy sick, very sick – 3 days till Ally is 4 yrs old!!!

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…