And the award goes to…

March 9th, 2010

We arrived home this afternoon from our extended hospital stay (3 weeks this time).

In honor of it being award season and the Spare Tire Awards given out by my brother, Kip, after his cross country travels, here are the first ever hospital awards:

He looks surprisingly quiet right there.

Loudest visitor:  Ben, hands down.  No contest.

Most fun had in hospital setting:  Ben, hands down.  No contest.

Most fun had in the hospital setting runner up:  Karly, she can just make me laugh, she was my entertainment during Ellie’s first surgery.

Greatest book recommendations/most delumptious (delicious + scrumptious) English Muffins:  Sent from my aunt Suzanne.   She is a former librarian and always gives me great book recommendations.

Most laid back:  Thom.  Couldn’t have done it with Thom’s courageous attitude and his absolute knowing that Ellie was receiving the very best care from the very best surgeon.  I credit him and his attitude with making these surgeries and this hospital stay the easiest one yet. 

Runner up for most poop in one sitting:  Ellie Kennedy (so close to being the winner on that one!! Her aunt Susan would be so proud.)  When the nurse came in to dump Ellie’s “dump” from the commode, she said, “WOW!”  But she told us the one little boy had filled the entire commode and she had given him an actual certificate to commemorate his accomplishment.  We were so close. 

Most informed:  My sister, Susan (I discovered when my brother and I were in St. Louis and she actually knew more about our plans than we did even when Kip and I were physically in the same room…)

How could this NOT be the most favorite part of his day??

Most meals delivered:  Janna (Janna planned on providing us with 5 weeks of meals and it has been such a relief to come home from a day at the hospital and just have our food already taken care of.)

Most visits:  Brittany has been in the hospital almost every single day not only this visit but the hospital stay back in January. 

Most surprising delivery:  Laurie Schmidt, Ellie’s occupational therapist from school, mailed a card and gift certificate for a restaurant near the hospital to the hospital.  I don’t think anyone has ever actually mailed us there and it was quite surprising and delightful. 

Longest distance traveled:  Betsy C.  traveled from Chicago to attend the birthday celebrations.  The day was that much better having her with us.

Excellent Esther and her adorable children.

Most crayons delivered:  Esther Kim (She scoured not only her house but her sister’s house to deliver a huge container of  crayons that kept Ellie occupied for an entire afternoon.)

Best texts:  My brother Kirk keeps sending me inspirational/loving texts, just brightens my day. 

Best at convincing me he was planning a surprise without doing anything at all:  My brother Kip.

Best at thinking 40 degrees is a heat wave–Cynthia. (This award kinda cracks me up because my sister who lives in Memphis will say that if it is 40, they cannot possibly leave the house it is too cold.  But when it got up to 40 here recently, Cynthia was concerned that the meal she wanted to drop off on our front porch would go bad if left out too long in the heat.  Just funny how your perspective changes depending upon where you are.)  Hard to come up with an award for Cynthia because she has done so much.  She has made us delicious meals, wonderful chocolate chip cookies.  She has offered to take Ben on playdates (with one actually happening b/c of our wacky schedule).  She has visited with gifts.  She even went to a Kevin Henkes book signing and had him sign a copy of his latest book for Ellie.   AND she has loaned me maternity clothes. 

Jennifer and baby Alex join in our family fun!

Best smell of springtime:  Jennifer Wilkinson.  Jennifer brought me a hyacinth plant for my birthday and as I type I can smell the wonderful springtime smell wafting toward me.  In addition, she left work to pick us up this wonderful Chinese food close to her work the day of surgery numero uno.  It was just a nice break in the day to have a visit from Jennifer AND to not have to think about what to eat. 

Longest distance phone call:  My mom from Malawi on the day of surgery. 

Longest distance for crayons to travel:  Grandma & Grandpa Kennedy.  Those crayons traveled all the way from St.

Bella and Sophia named me "Awesome Aunt" on my birthday.

Best rendition of the song “Happy Birthday”:  Kirk, Bella, Sophia, &  Dariush rendition mostly because they called me “awesome aunt”, but also because it was just so darn cute. 

Best baker/conversation maker:  Ms. Sue Zwart.  Not only did Ms. Zwart (Ellie’s special ed teacher last year) totally keep the conversation going and keep Ellie included in the room while she visited.  But she brought home-made chocolate chip and frosted flower cookies.  Made it so I could not wait to get to the hospital for more yummy delicious cookies!

Best silly jokes:  Dan, Sara, Zach, Noah, Mia & Hannah.

Biggest football fan:  My dad.

Looks best in the color orange:  Ms. Mack, Ellie’s third grade teacher looks stunning, simply stunning in the color orange.   Of course this is not what I like the very best about her.  I like that she brought me chocolates.  Ok that is also not what I like the best about her.  There are so many things I adore about Ms. Mack, but probably in the hospital setting with Ellie the thing I appreciated the most was how much genuine interest and attention she paid to Ellie.  It’s priceless.

Most courageous childcare offer:  Lainie, although she already has 2 children at home under the age of 5, she offered to take Ben one day for a playdate.  Wow.  That’s just about all I can say to that.

Best at not letting me cry by myself:  Ms. Molly Petitt.  The day before surgery, as I was picking Ellie up from school, I started getting emotional thinking about how I would not be doing that again for awhile.  Even though it was a snowy or cloudy day, I had my big ol’ sun glasses that cover half my face on.  When I pulled up, Ms. Petitt and Ms. Latko were walking Ellie out to the car.  When Molly saw that I was crying, she immediately grabbed me into a hug and started crying too.  Ms. Latko did not realize I was crying and so was reporting on the day.  But then when she realized that I was crying she joined right in. 

Best at joining in on a group cry:  Ms. Kendra Latko.  Once she realized it was “have a good cry time”, Ms. Latko did not leave us hanging out there on our own, but joined right in.  I like that in a person.     

Best car service:  Chris & Kathy.  When the red light went on in our car, it was Chris who came and delivered Ben & Thom to the hospital.  Chris also had a playdate with Ben one afternoon to which Ben proclaimed that he wanted to go there the next day.  PLUS they made sure our sidewalk was shoveled during snowstorms.  PLUS they placed our trash cans out on trash day.  But wait, there’s more.  They also made us a yummy lasagna. 

Smallest teddy bear:  Stephanie, super-duper school nurse, brought Ellie the tiniest teddy bear we had ever seen, it’s like a teddy bear’s teddy bear.  So cute. 

According to Ben, Juna is exactly what our baby will look like, but only if a girl of course.

Daughter most likely to be twins with our soon-to-be child (according to Ben):  Lindsey & Gerald & Juna.  Even though both Lindsay and Gerald are in school right now, Lindsey constantly offered to take Ben while Thom and I switched shifts at the hospital.  Ben loved going over to their house and playing with their cats and “keeping Juna out of trouble” (although I am not totally sure how helpful he was at that.)   Lindsey would text me to say what days she was available to watch Ben if I needed it. 

Izzy and Ben

Most inspirational/coaching e-mails:  Amy Riley.  She rocks.

Best chicken naming–Izzy.  Izzy really really wanted us to name our baby, “Daphne”, like the girl in Scooby Doo.  Since we already had a girl’s name picked out, we used Daphne as one of our chicken’s names (we have four babies in our basement right now if you were unaware.  Imogene, Daphne, Tacky, & Blanche are their names.  They are going through that awkward pubescent phase right now and should be producing eggs by the fall.)

Best at planning a playdate for Ben–Lesly.   Izzy and her mom, Lesly took Ben on a playdate to Bounce U and for ice cream.   I think Lesly realized that for Ben going on a playdate with one of Ellie’s classmates would be just about the best thing that could happen to him (besides meeting a real live dinosaur or creating a robot or life sized train.)

Happy Birthday to Kippy!

March 8th, 2010

Ben and Kip in one of their loving moments, but the darker side of their relationship can occur just as suddenly...

Although Kip and Ben have a somewhat tumultuous relationship, when I think of Kip I just have to smile.  He has taken the best photos of Ellie ever taken, he just has the touch.  He is one of those people that can just have a good time anywhere, he just takes the good time with him.  Man-oh-man am I ever lucky to have a brother like him.  Happy Birthday, Kippy!!

Things I learned during this hospital stay…

March 8th, 2010

You can in fact turn 40 while your daughter is in the hospital.  (maybe not in the PICU, but on the regular floor at least.)

You can celebrate said birthday with a surprise party in the hospital. 

Hospital masks are extremely hot.  I will never be a surgeon for that reason (ok maybe a few others too…)

Modern Family is a my new favorite television show.  So much of it reminds me of myself and my family.   

If Kip tries to be the last to wish me a happy birthday, Kirk will one up him by calling even later. 

No two surgeries are ever exactly alike, so don’t try to predict what will happen.  Let it be a surprise!

I love new clothes for my birthday.

I love birthday cakes with my name on them.

Ben on his last birthday.

Chillaxin (chill + relaxing) is the best way to assist Ellie in chillaxin at the hospital.  Ghany (my anesthesiologist brother-in-law) told us awhile back that he noticed the kids who were the most upset were with parents who were the most upset.  It took us years to be able to catch up with that advice.   If surgery is no big deal to us, then it will certainly be no big deal to her.   Even things that seem unbearable can become bearable over time. 

Ben would prefer that he alone have birthdays (probably many 4-year-olds in America feel that way.)

Confined to a bed, my daughter can peel a whole lotta crayons! (I kinda already knew that, but she has just re-confirmed.)

Every single bathroom in each of our hospital rooms has made me feel as if I were “going” in the middle of the hallway because the door does not close all the way and you can totally hear everything happening in there.  Pretty much my worst nightmare.  Seriously, I think I have had that as a nightmare.

An ending and a begining…

March 8th, 2010

Caitlyn dressed up at the big Dino party last year standing beside her mom, Cynthia.  Everything is rolling along smoothly here.   Plans are to start chemotherapy today.  We will come to the hospital every Monday or Tuesday morning for chemo for 52 weeks, no breaks.  We are hoping to have Ben go to Tyler’s Place while Ellie is doing chemo each week.  That means at this time next year, we will be done.  Ellie has not been sleeping as well at night, the nurse’s coming in to do their job certainly does not help at all.  Now that she is feeling better, she is a bit bored being here and missing her room.  At one hospital stay we played this game where we listed the silliest things we missed from home (i.e. the toilet seat or the sticky stuff on our living room floor, etc.)  Ellie suggested we play that this weekend but could not think of one funny thing that she missed from home.  Instead she said, “But I do really miss my room.”  I imagine when we do go home (eta Tuesday afternoon) we will not see her leave her room for several days.  Ellie continues to make great strides in gaining back her walking, standing, but is having struggles with standing from a sitting position.  And we haven’t even tried stairs yet (that’ll be a fun at home experiment.)  Again, I am amazed at her ability to get it all back so quickly. 

Ben is super excited because not only did he get to go to Tyler’s Place this morning, BUT he gets a playdate this afternoon with our great friends Cynthia and Caitlyn.  Caitlyn is so cute she can only say, “Ben Kennedy”, not just “Ben” by itself.  I just wish the playdate could be recorded because I find 4-year-old conversations highly entertaining.  All that honesty and exuberance.  I think for him going home will actually be a bit of a let down.

Moving on

March 5th, 2010

Ellie

This morning we moved from the PICU to the oncology floor.  Ben will be excited because that means easier access to one of the playrooms.  And new friends to get to know.  Right now Ellie is sleeping and as soon as she wakes up she will get the catheter out and take a bath, a real bath in a real bathtub for real.  The plan is to begin chemotherapy before we leave the hospital.

Steadying out

March 4th, 2010

Another Ben photo...

So it looks like things might possibly be steadying out a bit.  Her sodium is gradually coming down from yesterday (I think we wre in the high 150s right now normal being 135-145).  There is talk of moving us to the “regular” floor either just in status or actually moving us physically.  A lot of the lines that she was attached to yesterday are no longer hooked up all the time.  Exciting, looks like we are moving in the direction of the exit (possibly next week if things continue as they are).

An all time high!!

March 3rd, 2010

Kirk playing tee-pee.

Great big Happy Birthday to my baby brother, Kirk today.  He turns 31.  When we lived in Chicago, Kirk could not pass a homeless person without giving them some money.  Once during college I came to visit him and he took me to my favorite college haunt, TCBY and bought me my favorite yogurt at the time, peanut butter.  Little did I know at the time that he spent his last few dollars to buy me the TCBY.  And he did not at all care.    That is the kind of guy he is, so generous, he would give you his last dollar without letting you know it.  And he is one of the most determined people I know, when he sets his mind to something you can bet your bottom dollar that he is going to make it happen.  Oh man do I ever love that guy.  The only thing that would make it a better Kirky birthday would be to be with him (eating cake of course). 

Last night Ellie’s sodium hit 177 (normal range 135-145), that’s an all time high for her.  She was also dropping a lot of water (diabetes insipidus or water diabetes).  Making some adjustments today to correct that, although this does very much seem to be a moving target. 

All the wonderful people…

March 2nd, 2010

Ellie with her mom and dad at Sesame Street.

This afternoon, Ellie was laying in bed just sort of smiling to herself.  I asked her what she was thinking about, to which she responded that she was thinking of all the wonderful people in her life.  I wanted to be a part of that so I asked her who she was thinking of.  She said, “Well, like you and Daddy.” 

Our endocrinologist (Dr. Bekx)  came in this afternoon saying she felt as if we were moving in the right direction with the cerebral salt wasting/diabetes insipidus.  We have switched from the vasopressin drip to giving her a medication through her g-tube (one step closer to moving off the PICU to the other side of the 4th floor).  She continues to have lots of ups and downs throughout the day with both her sodium and diabetes insipidus.  Dr. Bekx told us that it can take anywhere from 2-4 weeks for everything to sort of settle in the brain after surgery.  I think when she got to the 3 weeks, I sort of blacked out for a minute thinking of being here for another 3 weeks (today would be week 1 after her last brain surgery.)

Yesterday, Esther came to visit bearing all the crayons both she and her sister could rustle up around their homes.  After she left, I imagined all of their children searching desperately for even a small crayon with which to do their work.  Felt a little bad imagining that.  Ellie reminisced following her visit how much she loves Esther’s visits and how she even loves Esther’s name. 

A great big thanks to Karly for dropping in yesterday with lots of stuff for the silly garden PLUS book gifts for both of my children.  Ellie’s wonderful teachers from last year, Ms. Zwart and Ms. Mack came to visit bearing more gifts (bears) and chocolates.  And once again we had an absolutely marvelous visit with the 2 of them, where the entire time, Ellie felt included in what was happening.  Once again, I have to give a shout out to Brittany for her visits both yesterday and today.

It’s really the little things

March 1st, 2010

Ellie checking her "watch", is it really that early?

5:30 am–Ellie’s final bandage was removed by neurosurgery.  Apparently early early morning is the best time for neurosurgery to do these kinds of items.  They accidentally left a few staples so I assume they will be back for those.  Otherwise how will she get through airport security next time we travel? 

Yesterday Ellie was saying that Oscar the Grouch would really enjoy the way she was looking, after 2 brain surgeries and almost 2 weeks of no hair washing.  I had to agree that she did look a bit like she’d been living in a trash can. 

Ellie seemed to have jumped over all the ups and downs of the salt wasting, then suddenly she overshot normal again.  All night she was at 140 (normal 135-145), which is excellent, then this morning, she dumped a bunch of water (diabetes insipidus) and her salt went to 150.  Certainly no 170, but enough to need adjustment.  She is keeping everyone around here on their toes, that’s for sure. 

Our neighbor, Chris, talks with Ellie.

A giant thank you to our wonderful neighbors, Chris & Kathy for not only watching Ben for a few hours yesterday so Thom could get some much needed sleep, but making us a yummy lasagna for dinner.  And that was on top of transporting Thom & Ben to the hospital when the red engine light went on in the car (and for those of you keeping up with all of this car scarfuffle, this is not the car that died at the traffic light a couple of weeks ago, they are apparently taking turns needing our attention).  Red engine light did not go on yesterday when Thom started the car so we are hopeful that it was a false alarm.  It’s funny how when faced with the PICU it is the little things that can push me over the edge–having a roommate, getting kicked off my Pandora account because I’ve used all my time playing classical music for Ellie’s brain, the car breaking down.  That’s when I want to throw my hands up and say, “ENOUGH!!! Can I please have a break here??”  It kinda makes me laugh at how ludicrous that last straw can be.     

And back to giggles

February 28th, 2010

Ellie on the beach in Florida.

Last night Ellie was so loud that we (and when I say “we” I mean Thom who is on night shift and Ellie) were moved at 2:30 am to our own private room!!  So much space I hardly know what to do with  myself and normal talking voices.  It was an exciting night, Ellie’s sodium jumped up to 170 (not her all time high which stands at 172, again normal is between 135-145).  

This morning when I came in everything I said and everything Ben did caused Ellie to have the giggles.  Made me feel like I was a comedian.  Now Ellie is sitting on the sofa tit tatting with Brittany and peeling crayons.