Unfortunately its been seeming like weekly is about as often as I can update this blog these days.  I do try to do it more often but it tends to fall toward the bottom of my To Do list that seems to be as long as my arm these days.  I will say, I finally got through writing all of my thank you cards for Finley's birthday today.  Um yeah - two months later.  It makes me nauseous to admit that because I usually try to get them out much sooner.  So...if you have been waiting for yours...they are in the mail.  And I apologize!  Now I have to start on Nate's!

Mini-Family Hug! (Mike was taking the picture!)

The results are in!  We had to wait until today for the results of Finley's kidney scan - not because they weren't ready - because the doctor didn't call until today!  That left me wondering and worrying the last couple of days.  What if he wasn't calling because something was wrong and maybe they were going to call and have me schedule an appointment to review the results? My mind works in mysterious ways!  Anyway - the results were great!  No damage from the previous UTI (or was it?).  He said Finley's right kidney is smaller than her left, a congenital defect, but nothing to worry about.  Perhaps this runs in the family and is the reason why I have to go to the bathroom so much?  This explains a lot!  Needless to say - we got the green light to stop her antibiotic and we don't need to go back to see Dr. Cheng unless she winds up with another UTI.  Go Finley Go!

This looks interesting...

Nate doing his "Hillbilly Hand-Fishing" imitation and pretending my foot is a fish!

We also finally heard back from the endocrinologist today about Finley's feeds.  We visited right after her birthday and I had inquired about changing her formula - now that she is one.  Well, nearly two months later, we've been advised to start her on Enteral Pediasure.  Which unfortunately is A LOT more expensive than formula, but may give us the opportunity to stop the Polycose entirely since it has more carbs in it than formula.  We have to take the good with the bad unfortunately.  I am also looking into doing a partial blenderized diet for her.  I need to do some more research...more to come on that hopefully.



Something else that has been top of mind lately is fundraising.  Charge it for CHARGE is the fundraiser that the Foundation does each year.  The fundraiser kicks off in the fall and runs the entire year.  Families participate by setting up a personal page on the Charge it for CHARGE website.  Many of the people who read this blog regularly know all about it because so many of you have been so generous to give on behalf of Finley.  My original fundraising goal was $3,000.  When we reached that super fast, I increased it to $4,000.  the $5,000.  And finally the last goal I set was $6,000.  And as crazy as it is, we certainly never thought our campaign would be so successful.  But you know what?  We are sitting only $12 shy of our $6,000 goal!  Its unbelievable.  Anyway, with the close of the 2nd annual campaign getting ready to draw to a close, the Foundation is preparing to kick off the 3rd annual Charge it for CHARGE fundraiser at the end of October.  We have some big news to share about that.  But we cannot divulge it yet!

You don't want to know.

Anyway, I have been trying to think of other things we can do for fundraising and my eventual goal is to plan and execute a large scale fundraiser - but I need to think of a good idea that isn't already taken.  And since that will likely take a lot of planning, I was thinking that for 2011, I am going to plan a colossal garage sale where all of our friends and family can donate their new and gently used items to be sold at the garage sale and ALL of the proceeds will go to the Foundation.  I was thinking I will make some hair bows (my new hobby) that we can sell, maybe couple it with a bake sale and whatever else comes to mind and just make it a weekend of fundraising for the CHARGE Foundation!  As  much as I loathe the thought of hosting a garage sale - I think the fact that we will be donating all of the proceeds to the Foundation will make it exciting.  I am thinking we will do this in the spring - maybe May-ish before it gets too hot.  So if you are interested in donating some items, please start setting them aside!!

Hey lady.  Give me that paci!

Winner winner chicken dinner!

Along the lines of fundraising, I have a request.  Today I received a note from the Foundation about a website called iGive.  I recently read about iGive in a magazine and I tore out the article but never had a chance to log on.  Until today.  And ironically it wasn't because I saw the article sitting on my nightstand (where it still sits) it was because of this note from the Foundation.  For every person that joins iGive in the next 24 hours, they are giving the Foundation $1 each (until noon on Sept. 30). This is such a super easy way to raise money!  The premise is this - every time I shop online at any of their 808 participating stores (all of my favorites are on the list) I am raising money for the CHARGE Foundation (my charity of choice). And when I search the web through iSearchiGive.com (a search engined powered by iGive!), I'm raising a penny or more for my cause every time.  Since I do a lot of shopping online - especially during the holidays - I figure this should be a windfall for the Foundation!  Please consider doing this small thing to help the Foundation!  Here is the link:

http://www.igive.com/welcome/warm_reg_promo.cfm?m=638016

Piece of cake!

One final thing of note.  My company, Hewitt Associates, has been recognized by Working Mother magazine as one of the top companies for working mothers.  They asked Hewitt to solicit Working Mother of the Year nominations from our associates.  One day a month or two ago, I received a call from a gal in HR informing me that I had been nominated.  I was astonished.  The girl on the phone interviewed me, asked me questions about my family, my job, etc.  She said I would be notified of the outcome in a few weeks.  A week or so ago, I received another note saying while I hadn't won, I had been chosen as a finalist and they shared a link to a small article that they were going to be posting about me on our company's intranet site.  I was pretty sure that no one would read the article...until my manager forwarded it out to our entire market.  Since then, I have received the sweetest, most kindest acknowledgements from so many people.  All of these notes have really meant a ton to me.  And as crazy as all of this is to me, I think its really cool that someone thought to nominate me.  And you know what?  I still don't know who that person is!  They wouldn't tell me!  Needless to say, if that mystery person is reading this.  Thank you.  From the bottom of my heart!

The electricity has only gone out at our house one time in four years - and that was only for 3 hours.  That was, until Tuesday.  A giant part of a tree at my neighbor's house (three doors down) fell on the power line around 6 pm on Tuesday night.  At first, it was pretty funny answering Nate's questions - every room of the house we went in to he asked "does this light work?" and he couldn't understand why I couldn't cook him dinner (our stove has an electronic ignition).  The it got old.  Really fast.  Nate was whining about wanting to watch "his show" on TV and how he didn't want to sit in the dark and could I please just change the battery in the TV.  The other problem was that Finley's pump had been running on its battery power since we had woken up that morning.  Each morning, we always unplug her and bring her downstairs and we don't re-plug in until the evening when we put her to bed.  We were very worried about her battery lasting through the night.  Fortunately, not only did she last through the night, she lasted through a big chunk of the afternoon and she could have gone longer but we brought her power cord with us to her cardiologist appointment and we recharged while we were there!  Which ended up being a really good thing because the power didn't come back on until after 8 pm.

Nate playing with his "magic wands" in the dark

(With the flash...)

Finley and her Grammy!

This weekend we are looking forward to going to the Mt. Prospect fire department open house - and annual tradition for the Roth family - and also seeing the girls and Baby Austin on Saturday!

Finley's kidney scan ended up getting cancelled yesterday.  I got a call on Thursday evening saying the machine had "broken".  We rescheduled for Monday, September 27th - but it was a bit of a bummer because I was really hoping to get this behind us and excited for the possibility of coming off the antibiotics.  I guess we just have to wait a little longer.

Crazy hair

Grammy came by yesterday and picked up Nate and took him to Toys R Us.  She ended up buying him his Halloween costume.  He finally decided on Ironman.  I thought for sure it would be Buzz Lightyear but Ironman has made a comeback in his book as of late and so Ironman it is.  And unlike years past when we couldn't pay him to wear his costume, the first thing he did when Grammy and Pop-pop dropped him off last night was put on his costume....and take the dog for a walk with it on.

Then this morning, the first thing he said when he woke up was, "Is it Halloween today?".  That was right up there with the first thing he said on Wednesday when he woke up (I kid you not), "I want a hamburger."

And recently, I have been noticing that Nate's vocabulary continues to develop and he's becoming more and more articulate.  The other day I said something right after he did and he told me, "Mom!  I just said that!".  Yesterday he called me in to the bathroom while he was pooping and he got off the toilet and told me to look inside.  He said, "Look!  That on looks like Finny and that one looks like me!  Now I am going to get back on and try to make one that looks like you and daddy!"  I have found that he's doing this a lot lately - while some people look at the sky and try to determine what sort of objects the clouds look like - my son looks in the toilet and tries to figure out what his poop looks like.  Its never a dull moment around the Roth household.

Snoozing on daddy

Nate "holding" his sister

They recently published a new book about CHARGE Syndrome.  I mentioned this in a post a couple of weeks ago.  Anyway, I've received my copy and have started reading it.  I have to say - I am so happy that there is finally a really good resource full of such great information.  As the parent of a newly diagnosed child, already it is teaching me a ton and helping me to really understand all of the things I should be asking Finley's doctors.  I am excited and overwhelmed all at the same time.  I am hoping that I can get her doctors and therapists will take the time to read it as well.

Finley the "naughty" pirate!

Chow time!

This date is etched in my head like all of the other important dates I have jumbling around up there.  One year ago today - exactly 4 days after Finley's discharge from the NICU - relatively speaking - her chest exploded.  The huge glob of pus that erupted from the surgical incision on her chest - 23 days post op - surely it wasn't good.  And it wasn't.  I rushed her down to Children's where the nurse practitioner removed the remaining steri strips that were covering her incision to reveal a red, angry infection.  The urgency at which she rushed around that exam room and phoned Dr. Backer, Finley's surgeon, was all I needed to know that this was very very bad.  Finley was immediately admitted to the PICU where the CV surgery team began to assess her and order tests and CT scans and the like and as all of this bustling went on around me, I left the room to pump.  Little did I know, things were about to get more complicated.

When I returned, there was a message for me.  From Dr. Burton.  The geneticist.  The results of Finley's genetics test were in.  She'd like to talk to me.  But it was 5:30 pm and I knew she'd left for the day and as I sat on the phone with Mike and we put our heads together to try to figure out how we could get our hands on those results without waiting until the morning - I received a call from Finley's pediatrician.  I had called to tell her Finley had been readmitted with this infection.  She asked if I had spoken to Dr. Burton.  WHAT?  Had Dr. Burton called her????  So after a lot of cajoling, and yes, I would talk to Dr.Burton first thing in the morning so she could explain first hand, and blah blah blah - she told me.  Finley has CHARGE Syndrome.  CHARGE Syndrome??  It happens in 1:10,000 live births she told me.  And since she knew that Mike and I would immediately Google it (something the doctors ALWAYS advise you NOT to do) - she gave me this website: www.chargesyndrome.org.

September 14, 2009 is the day we found out Finley had CHARGE Syndrome.  And while its huge bit of information to digest and process, it also gave us a sense of relief in some ways.  All of this "stuff"...it finally had a name.  And as we poured over the information on the Foundation's website, this puzzle started to come together.  Look at that - there is a picture of Finley's ear on the site!  The typical "CHARGE" ear.  Heart defect?  Check. Swallowing issues?  Check.  And as we read the other significant symptoms of CHARGE - colobomas (vision loss) and hearing loss....we hoped that Finley would fall in to the teeny tiny perfect of kids who don't have those things.

Fast forward to today and we definitely know a lot more.  Do we know everything?  No.  We know what we know and certainly there will be a lot more we will find out.  But in spite of all of that and in spite of the fact that we now know that yes, Finley is also visually and hearing impaired, and all of the challenges she's faced and continues to tackle, its not quite as scary any more.  And as we look back on this last year since we became part of the "CHARGE Family" we focus on Finley's accomplishments, achievements and we focus on taking things day by day and soaking in every smile and every moment and making those moments the best they can be.

And if you never have, please take some time to visit the CHARGE Foundation website and learn more about CHARGE Syndrome today!

Yesterday we were honored to be a part of Leah Nunez's 1st Birthday celebration!  We met Leah and her family in the NICU at Children's.  Leah was born two weeks after Finley, at Lake Forest Hospital (like Finley) and has the same congenital heart defect (Tetralogy of Fallot) as Finley.

I was telling Mary and Humberto (Leah's parents) that I remember that day that Leah came to Children's like it was yesterday.  Finley had just gotten back up to the NICU after her first open heart surgery and Leah's dad was there.  I can remember the pain in his eyes and could practically see his heart breaking and I just wanted to give him a hug because we had been there too.  In that same place, with those same overwhelming feelings only two weeks earlier.  Fortunately for us we had the opportunity to get to know the Nunez family a little more when Finley was readmitted to the PICU for her wound infection and we found ourselves as suite mates to them as Leah had just had her first open heart surgery.  Mom and I began texting regularly and the rest is history!

It was a beautiful day for Leah's party - the weather really couldn't have been more perfect!  It was so nice to see Mary outside of the hospital, and meet her family and all of her adorable nieces and nephews and celebrate such a wonderful occasion!  We feel very lucky to have met such wonderful people on this journey of ours - I just keep thinking about how they could have been anyone in the world - but they weren't - they are such amazing and kind and beautiful people and now we get to call them our friends.  Happy Happy Birthday Princess Leah!

Sorry I can't post any pictures - Finley decided that she'd sleep through the whole party so I didn't have a free hand to take any but I asked Mary to send me some if she could!

P.S.  This little jar:

turned out to be full of $113.64!  Thanks to everyone that contributed!!  We are so proud!

Yet again, its been a long time since I have posted.  All I can say is that its been busy - home, work, etc.  All busy.  And I blame it on my the pump.  M breast pump that is.  You see, when I was still pumping, I would update my blog in the morning when I pumped first thing.  It was a perfect time to do it and since I've stopped, I haven't been so good at making that time.  That being said - I've got a lot of pictures to post!

I was in Richmond, VA this week for work.  I have to say, I can only take the airport in doses but I do really enjoy the people watching.  There crowd of people at the airport never disappoints.  I often find myself wondering if some of the people in the airport are aware of themselves - of what they are wearing, of their personal space, of the fact that they aren't the only person on the airplane.  I found myself thinking things like "They call those 'skinny' jeans for a reason", "Is that a wig?", "We get that you are a very important businessman, but can that very loud cell phone conversation wait until we get off the plane?"  And of course - BOTH of my flights were delayed - and so of course I chuckled when I say the United sign at the airport that said "We're number one in on time arrivals of all the big 4 airlines!"  Really? Remind me not to fly on those other ones.

Last weekend we went to the zoo.  It was Finley's first trip to the zoo and Nate's first trip this summer.  We had a lot of fun - Nate of course didn't want to go home at the end.  It actually worked out quite perfect - the zoo was open until 7:30 pm - we got there around 3 in the afternoon and we got a parking spot right in the front.  Finley chitter chattered the whole time and crapped out right as we were waiting in line for Sting Ray Bay.  And since strollers weren't allowed in some of the exhibits - I had to carry her.  WHOA! She is heavy!!!  Some pictures from our outing.

You may notice in some of those pictures above that Nate is only wearing one sock.  This has been his standard attire for more than a week now.  Talk about being a quirky kid - he got a small boo boo on his foot - which I am certain by now has healed a million times over, but he insists on keeping his boo boo covered up.  That while sock in the picture was BLACK by the time I finally got him to put it in the laundry. It could have walked on its own.  I did eventually get him to take it off one day after his bath, he went to bed without it and then as soon as he woke up, he asked for another sock!  This time he wanted blue - so now he just keeps saying "Look mom - its not dirty!"  I am said - yeah - that is because you just can't SEE the dirt!  Anyway, the Michael Jackson of socks is going on a week and a half of this now.

This morning I FINALLY had some time to put away all of Finley's fall/winter clothes.  In addition to the clothes she got for her birthday, we were VERY fortunate to receive and absolute TON of 18 month clothes from Amanda Marshall from her daughter Peyton who had outgrown them.  It was so much fun to look through all of the stuff she sent us and put it all away in Finley's closet - there were so many things I actually ran out of hangers in Finley's closet!  Thank you Amanda!!








This week Finley goes for a kidney scan at the hospital on Friday.  This is the test that will determine whether or not she had any kidney damage when she had the UTI after surgery.  If there is no damage, she is supposed to be able to come off of the prophalactic antibiotic that she takes and we won't have to see the urologist anymore!  YEY!

As a side note, this weekend is Eric and Kathy's 36 Hour Radiothon for Children's Memorial Hospital.  I have to go drop off my change jar today, but if you have a chance, please tune in to 101.9 FM and listen to the telethon.  Then donate.

We didn't end up filling it to the tippy top - but not bad!

Finally I have a breather long enough to update this.  This one is for Liza because she so diligently checks this blog every day and then asks me why I haven't updated it!  And this might be Liza's last time to read for a while because SHE'S HAVING A BABY TOMORROW (or maybe Friday)!!!!  Best of luck to the Parke family this weekend!

Nate teaching Finley how to hug