A Month of Thankful: Day 22

Thankful for the Falciani Family.

And now, bless the God of all,
who has done wondrous things on earth;
Who fosters people's growth from their mother's womb,
and fashions them according to his will!
May he grant you joy of heart
and may peace abide among you;
May his goodness toward us endure in Israel
to deliver us in our days.

Sir. 50: 20-24

 Our family wishes you a blessed Thanksgiving!

A Month of Thankful: Day 21

Safe travels.



I'm grateful we got here in Disney safely.  And mostly sanely.  (Mostly.)  I didn't take a whole lot of photos of the way down, but here are a few:

5:30 am - first stop.  Pork Rinds for breakfast!

 Second stop: chips! Yay for gas station food!

Snippets of conversation:

Damien: I see the moon.  Where's moonman Pete? (From Mickey Mouse Clubhouse)
Meg: On the moon.
Damien: (Arm up to the sky) Can't....reeeeeeach!

Damien: I see bird! Where bird go?
Meg: His mommy said come home for dinner.
Damien:  Eat french fry?
Meg: Yes.
Damien: And sauce?  (applesauce)
Neal: No.
Damien: Why?
Neal: Because birds can't use spoons.
Damien: OH.

(pick a child) "Can somebody charge my <iDevice>??  What do you mean we are out of plugs?"

"Are we there yet?"  (I think the grown ups said this the most!)

"Do we have any more snacks?"

"Hey! I like that song.  Turn it up!...Please?"  (Celia's choices: Katy Perry.  Matthew: fun.  Damien: Ke$ha and PSY. Mom & Dad -- anything that didn't cause an argument.)

"If you're *just driving*, for the love of <pick a saint> GET OUT OF THE LEFT LANE!!!!"

and then finally....

"I see Mickey!!!"

Finally here!

Happy Thanksgiving!  Wishing everyone on the roads or rails and in the skies "Safe Journey."

A Month of Thankful: Day 20

What is "normal" anyway?

Celia gave me a story she wrote, and I want to share it.  She's so matter of fact:


Celia Rosemary Falciani is eight years old. When I was born I was a normal person. On my first birthday I had a vanilla cake with ladybug frosting. I ate it and the next morning I was sick so I had to go to the Emergency Room. They figured out what was wrong with me. They said I needed a tube. So they gave me medicine so I whould (sic) be sleepy. When I was sleeping they took a sharp knife and cut a hole in my belly and placed a tube in the hole.  So I had a lot of allergies so they gave me a medical bracelet.  They gave me a tube monkey with a tube.

That's how I got my tube.

Ok, it skips over a bunch of details, but that's about the gist of it.  One of her friends wanted to know how she got her tube, so that was her story.  Sure, there are days when she struggles, but she really is good -- she doesn't know any differently.   A couple of years ago, we saw a child with a feeding tube backpack like hers, AND a trach.  She was indignant that he had a tummy tubey AND a neck tubey -- unfair! 

When Damien first got his ng tube two years ago, the first question the big kids asked was "When is he getting a 'real' tube?"  ("Real" meaning g-tube...last I checked when I put it in, it wasn't imaginary...). When he eventually got a g-tube, Celia wanted to know when he was getting a "good" tube.

Today, the little boys and I went to Walmart to pick up some last minute supplies for our trip to Disney.  A lady asked them their names.  Jude said, "I'm Big Brother Jude."  Damien grinned, hiked up his shirt, and said, "Tube!"  I just shrugged and said, "It's new.  Some kids show off new sneakers...he's showing off his new tube."

I'm thankful they don't see themselves as "different."  Some kids drink with a straw in their mouth, they just drink with a straw right to their tummies. That's their "normal."

A Month of Thankful: Day 19

DuPont docs, nurses & staff

For about 20 zillion reasons, but the biggest one - it's a hospital who treats kids who are sick, not a place for sick kids.  That seems a difference of semantics, but it's not -- they treat the *child*, not just their medical problems.  Between the gang, we've amassed a team staffed by docs that treats the kids from head to toe:

Psychiatry
Psychology
Developmental Pediatrics
Genetics
Allergy
Neurology
Endocrinology
Neurosurgery
Ophthalmology
Audiology & Otolarangology
Dermatology
Gastroenterology
Cardiology
Hematology/Oncology
Pulmonology
Urology
Orthopedics
Therapy Services: 6 Physical therapists, 3 Occupational therapists, 2 Speech Therapists and 1 Feeding Therapist
Lawall Prosthetics/Orthotics (a contractor, but with an office in the hospital - they even have a skate-boot-orthotic specialist who is there three days/week).

plus "incidentals" like Pre/Post op staff, Day Med, Radiology, ER team, Anesthesiologists, etc. I've lost track of the actual head count of docs.


But the folks I'm most thankful for:

Dr. Rhonda Walter - she's Celia and Jude's doctor.  She is incredibly helpful, but does not limit her "knowledge" of you to the exam room.  We were talking about Celia, and she noticed Jude's eyes crossing and put in a referral to cattle prod opthalmology to see him asap.  Yesterday, I was sitting alone in the cafeteria (Damien was in the MRI suite having a test, and the other kids were at school/home) and the first thing she said, before even "Good Morning!" was "Is everybody OK?  I don't see anybody else with you."  (I specify "Dr. Rhonda" because there are three Drs. Walter in the hospital - Dr. Rhonda, Dr. Andrew who heads up Hematology/Oncology (also a great doc - Cel was his patient a few years ago), and a third Dr. Walter, general pediatrician, whom we have never met.)

Miss Tanya - she's a "floating" registrar who sees us everywhere.  She never fails to say hello, or even just look up and wave if she's with another family.

Dr. Scavina and Alisa Clark, NP - they're the heads of our Neurology team.  They are resourceful -- both for in-hospital things AND knowing when they're over their heads. (The hallmark of a good doctor is one who says "I don't know" rather than bluffing.)  They see all five kids and are always willing to field a call or email.

Dr. Heinle - also another doc who knows his stuff, treats the patient like a person, and knows when to say "I need to find out more."  When Luke first had his sleep study and the EEG portion was nothing like it should have been, he called to say, "I don't know what this means, but I'm going to go stalk neurology until somebody tells me what to tell you."

Dr. Yost, our psychiatrist, and Jeanine, the NP for the unit.  When things go badly and we call for help, call backs are *immediate.* In fact, the last time I needed to speak to Dr. Yost, as we left the hospital for another appointment I left a note with the secretary in the module.  I wasn't even out of the parking lot when he called!

Miss Jaime - Damien's Feeding Therapist.  She has tons of patience and doesn't stop trying.  When every other technique to get Damien to chew wasn't working, she kept researching new ones until we finally found one. Then she took her own time & money to purchase the supplies to try the theory out.  It worked!  It has taken a year of therapy and he can now chew a potato crisp, but I'm glad she kept trying and didn't say, "Take a break, come back in six months," and kept trying to find new ways to see things.

Miss Nicole - Physical Therapist for Luke & Damien.  Another person who doesn't take no for an answer, and keeps pushing until kiddo gets what he needs.

The nursing team on 3F (the GI unit) - especially Jason. He's been there since Celia was first admitted & diagnosed 7 1/2 years ago.  He's taken care of everybody except Luke since then, and still talks to us.  I don't particularly enjoy being inpatient (who does?) but it's always nice to see a familiar face!

Finally - the GI team.  We still miss our beloved Dr. Horvath, but Dr. Jimenez is doing an awesome job, too.  She is the best kind of doctor -- the one that knows enough to be a great resource, but also recognizes that parents know their kids, and just because kiddo doesn't follow the "if this symptom, that is wrong" rule doesn't mean everything's OK.

I wish our list was a lot shorter, but I'm thankful that every one of them is there!

A Month of Thankful: Day 18

The Internet for research.

When I was a kid, we had two options for researching things.  One was to look them up in the set of Funk & Wagnalls Encyclopedia that we owned, published in 1973 and purchased soon after my parents married.  It worked well for things that were truly "history" -- Marie Curie had long since done her research, and President Lincoln's legacy was well-established.  You just had to hope you didn't need anything discovered since the Nixon administration.  The alternative was the library.  If you were lucky, you could find what you needed at a local branch, otherwise you trekked up to the Northeast Regional building.  If you were in need of really obscure information (I will never forget my Senior year AP History research paper - I had to compare/contrast the history of numerous WWII German concentration camps), you made the trek into Center City and the Central Library.

Fast forward 20 years.  Luke now does research on his phone.  The other day, he and I were on our cellphones working out some tough homework questions.  He was at school, waiting for Neal to pick him up, and I was at home.  We were using speakerphone to talk and texting to clarify spelling, while he simultaneously researched the questions on the same device.  The homework was to complete a crossword puzzle -- he was able to take photos of it, text them to me, and I printed them out (using a Wifi connection) so that we were able to keep our clues and answers organized.  I admit, I was "only" talking and texting with my phone, as I was simultaneously using the desktop computer to Google information, making Jude a hot dog, and fielding the washing machine repair guy.

Looking back at the last couple years, it amazes me how much things have changed.  To my kids, the "library" is "that building you took us to a couple summers ago."  Now we borrow books electronically.  (I think it's great -- I don't have to remember to return it because it just times out and disappears, plus if Celia finishes a book "after hours," she can keep on reading because I can get her another within minutes.)  If they need to look things up, they have the whole WORLD at their fingertips -- or at least, the whole World Wide Web!

Examples of things we have done with most, if not all, research via the internet:

How to build a catapult that will launch lightweight objects...

That becomes the prototype for a catapult project that, with further research, earns Honorable Mention in the school science fair.

Nearly all of the background research for Luke's airplane project -- that took First Place in the county college science fair.

Even the little boys get the benefit of the Internet....

Where to go apple picking...

 

And Mom's online friends at the Kids with Food Allergies Foundation for ideas how to make cookies out of nothing but potatoes and apples.

From my point of view -- the best thing about having the internet at home is not being beholden to another facility's opening hours.  We could research Matthew's most recent project at our "leisure" (read: long past 5 pm one weeknight, and 8 am Sunday morning).  We also didn't have to have rolls of dimes to make black-and-white copies of things we might need; we just "pinned" them to a Pinterest board and came back to them when we were ready to do more careful research.  We also could print out color pictures from medical journals, so we had good illustrations to model ours on.

There are LOTS of other things we use the Internet for (my husband teases I don't have to singlehandedly help Amazon meet their quarterly earnings projections...), but tonight, I'm thankful to have it to do research.   24-7 access to accurate and up-to-date info?  Yay for technology.