Limited Freedom

Robot Boy & The Intrusive Interloper


RB had a fever yesterday and we had to return to the ER at CHNOLA. Everything seems fine, but he’s being treated with antibiotics for safety reasons since some bacteria came back in his tracheostomy. It’s a bacteria he’s been colonized with and will always be there. His oncology team advised us that next time he has a fever, we won’t have to come to the ER. He can be treated for an illness by his regular pediatrician as he is no longer a cancer patient. After his next scan (which is this month) they are going to schedule a surgery to remove his port. All of his counts are normal and he is completely recovered from the chemo and radiation.

Although he has a lot of physical disabilities still (many of which he is overcoming slowly, and with therapy;some from which he will never recover). Things are by no…

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I should be blogging more often, but as most of you know my life is kind of, slightly, just a little busy. New readers can learn more about that here, here, and here.  I promise I’ve been writing. Just not blogging. At any rate, I see I have acquired a significant number of new followers lately, and I want to say thanks to you all for following. Thanks to my current and loyal readers, as well. And I hope I can deliver the goods, so to speak, to keep you all entertained and interested in staying on board!

Image courtesy of Stuart Miles /



– noun
1. the quality or feeling of being grateful or thankful

I wrote recently about my son, whom I regularly refer to as Scoots or Doodles, having been diagnosed with a malignant brain tumor. When we first shared this information with family and friends, right away everyone wanted to know how to help and many of our friends and relatives have been going out of their way to do everything they possibly can-including finding ways to raise money to help our family with various costs (which will be exorbitant) related to my son’s illness.

To say I am overwhelmed by their generosity would be an understatement. I can not express my gratitude and appreciation to them, and others, who are helping us by donating money, coordinating events, hanging flyers, putting out donation jars, and spreading the word about our family’s situation. I never expected such generosity, and I am simply overcome with emotion by it.

Some of my very close friends have set-up a donation page at for my son under the name Team A.J. Already we’ve received generous donations from not only friends, family, co-workers, former co-workers, etc but also from strangers. We are so thankful to them all. There aren’t words to express it. I can’t say thank you enough times, but I will say it now-Thank You.


To Those Deserving Thanks

I’d like to extend a warm thank you to those who have made my life a little less complicated and less stressful this week.

1) That new urgent care I found – On Friday Dec 30 my kidneys decided to harbor a nasty bacteria, and since the holidays were upon us, it was neigh impossible to get a doctor’s appointment. I suffered through the weekend, expecting that I’d be able to see a doctor on Monday. To my chagrin, most doctors’ offices and urgent care facilities were closed (January 2nd is not a holiday, people!). I was able to find one that was open and not very far from home. Their facility was very nice and had a comfortable atmosphere. All of the staff were very pleasant and helpful and not condescending or rude at all. They even called me with some x ray results days later although I was originally told they’d only call if there was a problem. They called even though there wasn’t just to let me know, and the nurse even checked up on me to see how I was doing. Thank you!

2) The lady at McDonald’s who handed me my coffee at the first window so I didn’t have to wait in line – Even though I was stuck there because someone was in front of me and behind me and I couldn’t squeeze out of line because of the customer at the second window who repeatedly handed his items back to the person at the window (seriously!), you went out of your way to have someone bring my coffee so that I could make a speedy exit. I was able to get out when the unsatisfied, difficult customer at the second window finally moved his ass. And I thank you!

3) The manager at the restaurant who had his delivery guy bring me my food that they originally forgot to put in my bag – OK it was really the restaurant’s mistake for not including the food item for which I’d paid. And at first I thought I’d never get restitution because no one answered the phone for like half an hour. But eventually the manager answered and he had someone deliver the food to me at work. It seemed they gave me a little lagniappe even (see: extra). It was too late for me to eat it at work, but I brought the food home and shared it with my husband. And it was very delicious. Thanks a bunch!

4) The very polite and helpful operators at AAA – On January 1st my battery died for no good reason other than I have terrible luck always. For this reason I am a member of AAA. I called and the operator was very helpful and polite. Another operator called to let me know when someone was en route to assist me and when to expect help to arrive. And another operator called to make sure help did arrive and that I was satisfied. They even sent me a text message with the information on who was coming out. The person who came to assist was also very nice. Thanks to you all!

5) Target’s Pharmacy – I’d never used their pharmacy before, but since my usual pharmacy takes at least an hour for a customer who is waiting, I figured I’d go for it. The lady who took my prescription was very nice and explained their system of color coding prescriptions, etc. They had a little trouble with my insurance card (which I’ve been advised is completely valid and so I guess it just goes with the rotten luck I always have) but my prescription was only four bucks without it anyway. They even offered to move all my prescriptions from the other pharmacy and said they would continue to figure out the problem with my insurance card. You went the extra mile. Thanks!

6) The waiter at Applebee’s who was trying really hard to give us a good dining experience even though the restaurant was out of everything and our gift card didn’t work – Did I mention I have rotten luck usually? We received an Applebee’s gift card for Christmas and on January 1st (yes the same day my car broke down) we decided to go there for dinner. The waiter advised us they were out of about three things from the menu and baked potatoes and parmesan cheese. The waiter was very polite and did his best to satisfy us and gave us two juice boxes of grape and orange juice for my son because they don’t serve apple. He even offered to go to the gas station next door to get apple juice at one point. Aside from the restaurant’s problems, our gift card was bunk and it didn’t work. The waiter was very nice even though we will probably not be returning. Thanks guy!

Thank you again to all of the above mentioned folks. It’s the little things that make life less difficult.