Going home again

Ellie has been able to sustain her wakefulness on the stress steroids through her g-tube.  Plan is to go home tomorrow late morning (in hospital time that translates to afternoonish...)  Great big thanks to Brittany, Esther, Ms. Mack & Ms. Zwart for their visiting.  And to Esther and Ms. Zwart for keeping us wel supplied with chocolate.  Oh and once again, gratitude to Janna for keeping us well fed throughout.

Quick update

Dr. Iskandar (neurosurgeon extraordinaire) came by this morning to say that we will continue with Ellie's stress dose of steroids for the next few days.  Which means we will be here for the next few days.  Drooling is much less than it was and her words are not as slurred.

Stress dosages

Apparently there is no going home on stress dosages of steroids.  So until there is a change with that, we will be here.  Ellie's sodium has been a bit elevated (which means her lips are all cracked).  Heart rate has been much better though.  Ellie is feeling a bit homesick today.

What a difference a day makes

[caption id="attachment_2510" align="alignright" width="300" caption="Oh man is that ever sweet..."][/caption]

Yesterday it was sunny and 60.  Tonight it is 40 and snowy.  Yesterday there was talk of going home today.  But it was a no go.   First Ellie was way way sleepy not waking up even when Ben was in the room (that is a rarity, I mean how else is she going to get all of her Ben yelling in for the day?)  Then when we increased her steroids (rescue steroids) to see if that helped her to feel a bit perkier, she did not sleep from midnight to early evening yesterday.  I suggested keeping the rescue steroids high during the day and lowering the dosage at night to allow her to sleep (and Thom for that matter).  The doctors decided to decrease all the steroids all the time and suddenly Ellie was sleeping again and not waking up when we tried to arouse her.  Now we are back on the rescue steroids and waiting to see what will happen.  But again the question becomes if the steroids make her feel better why is her body needing extra steroids.  What stressful thing is happening in there to cause her to need the extra assistance? 

[caption id="attachment_2515" align="alignleft" width="300" caption="Ellie groovin to some tunes."][/caption]

Talking with my super sister, Susan,  today I realized that I was holding my breath, anticipating, waiting.   Will Ellie always be like this?  Will she always be drooling, slurring her words?  Will Ellie have difficulty with her vision?  Will we be able to keep her awake without heavy doses of steroids (or maybe latte shots)?   I think there is that desire to prepare myself for whatever possibility awaits us or at least to try.  Because after her last partial resection surgery (the one in April 2008, not the most recent rounds of surgery), there was so much she lost when the communication between her pituatary gland and the hypothalmus was severed.  The whole summer afterwards I was a mess of disappointment, anger, frustration.  Trying to come to terms with what felt like a big fat loss.  Now I wonder will there be other losses to deal with now?  Will I go through the same swirl of emotions this year?  Will there ever be maternity underwear that is actually comfortable is that too much to ask? Ugh. 

But then I thought of sweet Ellie and how even when she was getting the questions wrong the neurologist was asking her (like how many fingers am I holding up or what color is this?), she did not give a hoot.  She was still her happy clappy self.  It reminded me of this song I heard on the radio, "She is Love" because that is what to me Ellie really exemplifies, "love".  And as my sister said to me today (have I mentioned how fortunate I am to have HER in my life?) that she knew I could handle whatever came along because I was such a superwoman.  And she reminded me of what an amazing teacher Ellie has been to everyone she has come in contact with (not just the medical staff right now.)  So I suppose I just have to take this moment as this moment and know that some things may stay the same and some things may not but no matter what we will find a way to not only survive but excel.  What other choice is there really?

Raising great sons

[caption id="attachment_2513" align="alignleft" width="300" caption="Because I cannot find a photo of Nancy quickly, she probably actually took this picture of Ellie and I on the beach in Michigan."][/caption]

Happy Birthday to my mother-in-law, Nancy.  The most talented quilter/knitter around.  Seriously, she is gifted.  When I show other crafty/artsy types of folks her work they are astounded, speechless at what she creates.  Not only are Ben and Ellie so fortunate to have her as their grandmama, but she raises superb sons (see Thom as a fine illustration of this).  Ellie loves all of her grandparents and considers them some of her favorite people.  Whenever Nancy & Gene joined us on a trip up north (what's more north than Wisconsin you may ask, northern Wisconsin, that's what), Ellie told me her favorite part of the trip without hesitation was spending time with her grandma and grandpa.   Nancy has always treated me as a friend, wanting to share and talk and be girls together.  And she has read every single one of my blogs and brags about them to her friends.  One day when we were visiting and I was grumpy, she said to me, "Are you feeling tired?"  It was just so compassionate to ask me if I were tired rather than taking my grumpiness personally.  We are all so lucky to have her as part of our lives.  Happy Birthday, Nancy/Grandmama!

Not a lot to report

[caption id="attachment_2506" align="alignright" width="300" caption="During her Elmo phase..."][/caption]

Ellie's heart rate has gone down to the 140s today (we are shooting for 130 at the highest).  She has better been able to stay awake since we increased her steroids (your body naturally produces more steroids during times of stress, since Ellie is not producing steroids we have to provide her with stress doses of steroids when necessary.)  EEG (that's the one that measure electrical activity from your brain with electrodes glued to your head) showed NO seizure activity, but lots of slower waves (delta) and irritation in the left hemisphere (typical after brain surgery).  No talk of going home, yet.

Grand Central

[caption id="attachment_2502" align="alignleft" width="300" caption="Smiley girl."][/caption]

Ellie continues to be way tired, slurring her speech and having difficulty this morning staying awake or even opening her eyes.  She is currently watching Sid the Science Kid (her favorite show because they all have such "crazy" hair.)  This time, Ellie's heart has been running high, around what you would typically see in an infant (sitting in the high 150s, normal for her age range would be around 130).  We had an EKG and echo this morning to check that her heart seems to be functioning properly.  There is an extremely small abnormality in one of the ventricles that is being investigated further (in any other case they would probably just right it off, but they want to be thorough.)  She is being called tachycardia (rapid heart rate).  She will have an overnight EEG (all these letters are a bit confusing aren't they?)  to see if she is having seizure activity at night.  So far the EEG has shown lots of slowing and delta waves.  There is some irritability on the left side (due to surgery it is presumed).  But nothing that looks at all like seizure activity.  We are giving Ellie stress dose of steroids to see if that perks her up a bit.  If it does it still does not explain why her body would need a stress dose right now and that would still need to be addressed.  so basically we still have more questions than answers at this point with a couple of hypothesis floating around.  It has been like Grand Central Station around here with doctors and EEG techs and everyone in between coming to talk, inquire, inform.

[caption id="attachment_2503" align="alignright" width="300" caption="Ben in orange, not on St. Pat Day."][/caption]

On a Ben note, we went to Target today for an emergency crayon run (we were on our last box and panic set in).  Ben and I had discussed wearing green today in honor of St. Patrick's Day.  He wore his green rain slicker in order to be even more green and was a bit concerned that others would laugh at my red coat (think Carmen San Diego here and you will perfectly picture my coat).  Well when we walked into Target, Ben immediately spotted a man with a blue shirt on and Ben proclaimed for all to hear, "That is strange, a BLUE shirt on St. Patrick's Day!"

Oh yeah and we're back in the hospital...

[caption id="attachment_2496" align="alignleft" width="300" caption="Ellie walking with a book in La Grange."][/caption]

So Ellie started drooling right before she left the hospital last time.  I mean a LOT like get your shirt completely soaked (and sometimes the pants too) kinda drool.  Wange (weird + strange).  Then yesterday she feel asleep at 2pm and slept until 3am.  I think that is the longest she has slept since she was a teeny baby.  We had decided to try school again today.  She lasted an hour before she fell deeply asleep on a bean bag, arms raised above her head and everything.  When I came to get her, she was extremly hard to awaken and was having trouble walking (of course if you were still asleep it would be hard to walk, wouldn't it?)  Stephanie, Super School Nurse, rolled her to our car in a chair with wheels on it, making sure to hold onto Ellie so she did not slip off of said chair.  When we got home, I did Ellie's meds and feeds and she immediately fell asleep again.  We alerted the hospital that Ellie was much much more sleepy than usual and of course an MRI scan was ordered to check things out.  It looks like the ventricles are larger (meaning hydrocephalous was likely because of increased pressure on the brain.)  Dr. Iskandar (remember him?  he pretty much rules the hospital as a neurosurgeon) explained that the cysts are filling back up with fluid causing changes in the brain.  He further explained that the surgeries he performed is very injurious to the brain and he speculated that Ellie had had a seizure which led to all the sleeping.  He also mentioned that if the cysts become problematic he can drain them fairly easily without a craniotomy (look that one up if you don't know it makes me a little woozy to explain it.)  Plan is to stay overnight and see how she does.

Happy Birthday Brittany!

[caption id="attachment_2301" align="alignleft" width="300" caption="The love between Brittany and Ellie"][/caption]

I know I know I keep talking about Brittany.  Brittany Brittany Brittany.  Last year we had the pleasure of meeting Brittany while she was Ellie's special education student teacher.  As soon as the school year was over, I asked if she could babysit.  Because you see, Brittany has the unique quality of being both a "Ben" and an "Ellie".  In my brief stint being a mother to both Ben and Ellie it has come to my attention that it seems as if some people are more "Ben" people and gravitate towards him and others are more "Ellie" people and gravitate towards her.  That makes finding a babysitter for two such different children challenging.  Plus, Ben is fairly particular about who he wants to hang with.  Now that we have Brittany as our babysitter, the children beg us to go out so that they can have any evening with their friend. 

I know I have mentioned how when we were in the hospital, Brittany came to visit every day (with the exception of a coupla sick days.)  She did this even though she was working 2 jobs at one point.  And almost every time she would come she would come bearing food or crayons or books. 

One of the things I like most about Brittany is that she is one of the most self-assured, confident people I know (and the amazing thing is she is only 23).  When I mentioned where Ellie's seizure medications were before one of her babysitting stints, Brittany told me not to worry because one of her childhood friends had had seizures.  So different than the panicked look I would get from other sitters when I would mention where the medication had to go (and I am quite sure I would have had the same panicked look if I had been in their shoes.)  Another extraordinary quality is how Brittany just would not take any of the sadness from the hospital on.  Sometimes, I could tell when a friend would come to visit they would leave sadder than when they arrived.  Brittany on the other hand seemed to leave us happier than when she arrived.  And she never ever looks at us with pity in her eyes because she sees the strength instead.  One evening while Ellie slept Brittany and I just talked and talked, it was as if we had an impromptu slumber party right then and there. 

What a joy it has been getting to know Brittany better and not only having someone we feel so confident caring for our children, but someone whom our children love.

Happy Birthday, Susan!

[caption id="attachment_2489" align="alignleft" width="300" caption="Susan's son, Dariush, just cause he's so cute (like his sisters before him)."][/caption]

A great big happy birthday to my older sister Susan.  My life would not be the same without her in it. 

Ellie's recovery is taking a bit longer than we initially anticipated.  Apparently 3 weeks of not moving around much is harder to recover from than say 1 week.  Anyway, she has gotten stronger and more able to walk while at home.  She is still working on being able to stand from a sitting position and doing the stairs.  She continues to drool a great deal and seems pretty exhausted much of the time.

And the award goes to...

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:

[caption id="attachment_2460" align="alignleft" width="300" caption="He looks surprisingly quiet right there. "][/caption]

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...)

[caption id="attachment_2468" align="alignright" width="300" caption="How could this NOT be the most favorite part of his day??"][/caption]

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.

[caption id="attachment_2480" align="alignleft" width="300" caption="Excellent Esther and her adorable children."][/caption]

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. 

[caption id="attachment_2481" align="alignright" width="300" caption="Jennifer and baby Alex join in our family fun!"][/caption]

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.

[caption id="attachment_2477" align="alignleft" width="300" caption="Bella and Sophia named me "Awesome Aunt" on my birthday."][/caption]

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. 

[caption id="attachment_2484" align="alignleft" width="300" caption="According to Ben, Juna is exactly what our baby will look like, but only if a girl of course."][/caption]

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. 

[caption id="attachment_2461" align="alignright" width="300" caption="Izzy and Ben"][/caption]

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!

[caption id="attachment_2473" align="alignleft" width="300" caption="Ben and Kip in one of their loving moments, but the darker side of their relationship can occur just as suddenly..."][/caption]

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...

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.

[caption id="attachment_2458" align="alignleft" width="300" caption="Ben on his last birthday."][/caption]

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...

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

[caption id="attachment_2111" align="alignleft" width="300" caption="Ellie"][/caption]

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

[caption id="attachment_2438" align="alignleft" width="300" caption="Another Ben photo..."][/caption]

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!!

[caption id="attachment_2434" align="alignleft" width="300" caption="Kirk playing tee-pee."][/caption]

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...

[caption id="attachment_2429" align="alignleft" width="300" caption="Ellie with her mom and dad at Sesame Street."][/caption]

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

[caption id="attachment_2423" align="alignright" width="300" caption="Ellie checking her "watch", is it really that early?"][/caption]

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. 

[caption id="attachment_2424" align="alignleft" width="300" caption="Our neighbor, Chris, talks with Ellie."][/caption]

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.