December 2011 Blog Posts (13)

12-23-11 Log

05:00am - 3 cc meds

08:00am - 3 Tbsp cereal

09:00 am - 4 oz formula

11:00am - 3 cc meds

12:00pm - 3oz baby food

01:45pm - 3 oz formula

03:00 - 4 oz formula

04:45 pm - 3 cc steroid

07:30pm - 2 bowls cereal

11:15pm - 3 cc meds

 

So far Claire is doing great on 2mg/mL give 3 mL Q 6 hrs

Added by Ashley Onorato on December 29, 2011 at 8:43pm — No Comments

12-22-11 Log **

Dose change

01:00am - body temp 96.2 F under arm

02:00am - body temp 94.9 F under arm (was actually 93.9 but you add a degree since its the armpit)…

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Added by Ashley Onorato on December 29, 2011 at 8:31pm — No Comments

12-??-11 Log

Its hard to keep an accurate log, I know its important incase something does happen you have a record of what you did that day

Not sure what day this is..

 

2:15am - Body temp 95.3 F

2:30am - gave 3cc Steroid

10:00am - 3cc Steroid

11:30am - Zantac dose

 

04:10pm - Tylenol w/3oz baby food / Body temp 96 F

06:00pm - 3cc steroid

07:45pm - 3 1/2 baby food

10:45pm - 6oz formula w/ rice &…

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Added by Ashley Onorato on December 29, 2011 at 8:00pm — No Comments

12-20-11 - Log

Home from hospital after over a week at 7:40pm

 

7:50pm - 1cc Hydrocortisone / body temp 95 F

10:00 pm - Claire was screaming, sweating, her body was cold to the touch, her under arm body temp was 91.7, the Dr stated to give 2 more cc STAT of steroid while they wait on the phone

10:50pm -…

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Added by Ashley Onorato on December 29, 2011 at 8:00pm — No Comments

Sleeping Patterns

Not sleeping, overactive - Claire was sleeping through the night by 3 months, it was great, but by 4 months she started waking up every 2-3 hours and there was nothing you could do.  Every doctor will tell you let her cry, but if your baby has extra steroids in her body she couldn't sleep either.  Claire stopped sleeping through the night and stopped taking naps around 4 months old.  By 6 months she was addicted to…

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Added by Ashley Onorato on December 28, 2011 at 8:49pm — No Comments

Diagnosis

Since I was not able to take Claire to her apt. myself due to work related issues, when I heard Claire needed STAT bloodwork I decided to leave work early and take her myself.  I was very nervous and scared she will have to get poked for blood and possibly be sent to the ER.  The bloodwork was very stressful, after coming home the lab called and her test was invalid they needed more blood. They ended up sticking her 6 times! We were there for hours as they ran the test each time to see if…

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Added by Ashley Onorato on December 28, 2011 at 8:14pm — No Comments

The End - symptoms

Claire had been having a runny nose, congestion starting at around 6 1/2 - 7 months.  We took her to the doctor once and was told its viral there is nothing they can do. It lingered around a few more weeks and at her 7 month apt. we brought it up again. We again were told its viral there is nothing they can do.

At this point…

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Added by Ashley Onorato on December 27, 2011 at 9:23pm — No Comments

The Middle - symptoms

When Claire was 6 months old she developed body odor.  It was as strong as a mans body odor.  Just like the vomiting it appeared suddenly one day.  I was out grocery shopping with my mother early in the morning and my husband calls me. He said, "Do you know Claire has body odor?" I scoffed at him and my mom said no way.  When I got home I smelled her and sure enough her armpits smelled terribly.  It happened every…

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Added by Ashley Onorato on December 27, 2011 at 8:58pm — No Comments

The begining - symptoms

The begining - When Claire was 3 months old she began spitting up / vomiting every time she had a bottle.  She would spit up atleast hallf of what she ate.  The first time it happened it was July 4th weekend, we were at my grandmothers house for lunch and halfway through the day she started spitting up and continued the next few days.  We took her to the doctor and were told its normal, dont worry about it, as long as she is…

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Added by Ashley Onorato on December 27, 2011 at 8:30pm — No Comments

Claire Marie - Why

At 8 months old my daughter Claire was diagnosed with adrenal cortical carcinoma at 6pm on 12-12-11, it was a Monday. I will never forget that moment of my life with the doctor on speaker phone telling my husband and I to rush to the hospital because our daughter needs admitted ASAP so they can remove her tumor.  I can still feel the empty hollowness ache in my chest when I think about it. 

Her tumor is so rare we were asked to make a journal and keep daily / weekly updates in case it…

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Added by Ashley Onorato on December 27, 2011 at 8:24pm — No Comments

Guest Blog: Two Renowned Chefs, One Great Cause…

We’ve had two incredibly successful culinary events in the past two months raising more than $650,000 for Alex’s Lemonade Stand Foundation in the fight against childhood cancer. What’s pretty amazing about these events is that they are truly chef-driven. Although our event staff provides a great deal of support, the group of elite chefs who participate are the ones who…

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Added by Alex's Lemonade Stand Foundation on December 19, 2011 at 2:59pm — No Comments

got this from a friend

Added by AJs Dad on December 15, 2011 at 12:13pm — 1 Comment

Thanksgiving...continued

We know…Thanksgiving was last Thursday, but we can’t help to share the moving and inspirational messages of thanks from the hearts of our childhood cancer heroes. Alex’s Lemonade Stand Foundation (ALSF) created a project via our Facebook fans asking our heroes and hero families to submit a photo of themselves or of their child stating what they are thankful for this year. Our heroes never disappoint – the response was overwhelming and the photos are heartwarming to say the least. A select…

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Added by Alex's Lemonade Stand Foundation on December 1, 2011 at 4:30pm — No Comments

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