Big Thank You to Aunt Mego for doing the last update, we were a little busy and no Internet in ICU.
Ben is doing well, we moved out of ICU on Tuesday evening. He was still positive for RSV so we went to 4 center instead of 4 west the cancer floor. He is still on oxygen but doing really well. Actually he is yelling at me to give him the computer right now so he can play games!
He has been continuing on radiation we go by ambulance from Children's to Touro everyday. He had to stop his chemo temporarily due to his low blood counts. He had a transfusion the first night we were here so the counts are rebounding. He did a swallow study yesterday to figure out what types of foods he is aspirating on and which ones are safe. This is all tumor related and something we expected. He now can't eat or drink anything thinner than honey, and no crunchy things. So that is manageable. They gave us thickener and we have been testing out all our favorite drinks to see how they taste thick, so far our favorites are lemonade and chocolate milk.
Ben has a pulmonary function test and consult with a Pulmonalogist to sort out what is tumor, what is RSV, and what is because of the aspiration. Then we can try and get his breathing as good as possible and get him out of here.
Thank you to everyone for all the prayers and support. Thank you to our neighbor Ms Kim for spending the day here Tuesday taking care of Big Ben and I while Ben was in ICU. The trashey magazines have been a big hit with the night nurses too! And HUGE than you to the wonderful Ms Jessica for taking such good care of Shaun while we are here with Ben. He is having so much fun he didn't even want to go home with daddy last night!
I'll update agin soon.
Erin
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8 comments:
Thans for the updates, Erin. You and your family are in my prayers, especially little Ben.
Erin:
I am glad things are getting better. you are all in our prayers. We hope 2010 is a great year for Ben.
Beth Nazar
Ahoy Ben,
That's a good sign that you wanted the computer from your mom so you could play games but please let her use it so we can know how you are doing...OK???
Since you like the computer so much, how about lots of computer jokes today?
What do you call a computer superhero?
A Screen Saver!
Why did the computer cross the road?
To get a byte to eat!
Who chases computer criminals?
A hacker-tracker!
What do you get if you cross a computer with an elephant?
Lots of Memory!
What do you get when you cross a dog and a computer?
A machine that has a bark worse than its byte!
Why was the computer so angry?
Because it had a chip on its shoulder!
Why did the computer get glasses?
To improve its websight!
Why did the computer sneeze?
It had a virus!
Where do computers go to dance?
The disk-o!
Where do cool mice live?
In mousepads!
Hope these gave you a little chuckle. =0)
We'll be cheering on the Saints this weekend!!!
Adios amigos!
Love you!
Dave & Ginger
Great to hear the medical team is working hard. Pirate Pilot Ben and his crew have amazing courage.
With prayers,
Mark and Doris from Virginia
Hey Guys,
We are praying for Ben and hope that he is feeling better. I hope mom is sharing the computer with him.
Robby came home from school today (Brother Martin) and tells me he has something to tell me. Well when Robby has something to share about his school day you never know if it is a good or bad thing. Anyway he said they had a school mass and the priest from St. Andrew said the mass. He said the priest spoke about Ben and how brave he is. He spoke of his wonderful sense of humor.The boys were touched by his courage and will be praying for Ben.
I hope things are getting better for Ben and that you can get home soon. Praying for all of you.
Go Saints!!
Cindy and Anna
Hey Ben,
Thick lemonade eyh, we'll have to try that. I think I'd prefer the chocolate milk thick...nothing with chocolate can be bad, right?
My asthma's been bugging me...it's tough when you can't breathe like you're supposed to. I hope you're pulmonalogist is good like mine. Mine makes me try to blow out birthday candles on a computer cake...not as fun as the real thing and caretainly not as fun as your pirate cake!!
BTW, I have some photos for you from your awesome birthday party. Julia and Chloe' want to help glue the photos on the card and draw some pictures for you. I will bring it by on Monday if that's ok with your Mom.
Mrs. Brechtel says you've been drawing up a storm...pictures for your friends in KW. I know she's missing you and says some monkey has been sitting in your chair in an SAS sweatshirt!! Hurry back to KW so Mrs. Brechtel can stop monkeying around !! Hee,hee,hee
Take care of yourself and your Mommy too, she loves you so!!!
And Geaux Saints...your buddy Drew is taking us all to Miami. Can't wait for us ALL to go, even if it's just on TV...
Love, Miss Janel, Mr. Jay, Liam, Julia and Chloe' too
The crowd is going wild..."Pirate Ben! Pirate Ben! Pirate Ben! Pirate Ben!"
Ben, I have been thinking about and praying for you so many times a day! You are such an inspiration to me! It gives me such a big smile to read that you are playing fun games and will get to hang out with your favorite nurses. And can I just say -- YUM --- that thick chocolate milk sounds so yummy! And Yummmm.... I'll have to try a lemonade shake!
And, hey little buddy, how about them Saints, huh! I am totally convinced that it was the advice you gave them before their game against the Jets that made them get this far. Heck, you were so good at it that some of that luck even ran over to the Jets. I mean, look at how far they've come and only because they shared the field with you during that most awesome coin toss.
Ben, are truly are a Super Star! Stay strong and most importantly, have TONS of FUN!
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