Sorry for not posting this sooner - I am flying solo this week as Mike left for Australia on Friday so between dealing with Finley's cold and the frequent suctioning and managing all of her overnight feeds myself - I am exhausted.  And I have to say - I have a TON of admiration for all of the single moms (and dads) out there.  Its definitely not easy and to do it day in and day out is nothing short of amazing.

So Finley ended up being discharged from the hospital early Thursday evening.  They really just ended up diagnosing the spot on her chest xray as a partial collapse of her lung, likely the result of a viral infection so they sent us on our way without antibiotics or anything (EEK).  I was told to watch for fever of 101.5 or higher and worsening symptoms.  So of course she woke up Friday morning a teeny but warm - 99.1 - not bad but still higher than normal and it certainly had the potential to go higher.  And Mike's flight was leaving that evening.  The good news was, by later in the afternoon she as fine.  She has been her normal cheerful self - just coughing more than normal and needing to be suctioned quite a bit.

The downward trickle effect of all of this of course is what impact it would have on the tests she was supposed to have today and tomorrow.  We ended up canceling the swallow study first because we didn't want to take the chance that would get screwed up.  They will really only do swallow studies every 6 mos or so so if she did bad - it'd be a long time before she had another shot and she has been doing SO good with her eating - we didn't want to take the chance.  We really didn't want to cancel her ABR (hearing test) and the bronchoscopy though because those had been difficult to schedule and coordinate with the audiologist.  So we took Finley to Children's today to meet with Dr. Holinger, her ENT, so he could evaluate her and determine if she should proceed with the procedures.  He knew almost immediately it was a no go - she is still very congested and "noisy" and he said the anesthesiologist would be comfortable giving her anesthesia and I told him quite frankly that was fine with us because we didn't want to end up with her being in the PICU again if something went wrong.  The bummer is - she really needs to have these tests done - but we need to make sure that she is as healthy as possible first to ensure the best possible outcome.  So we will be patient.

Before Mike went to Australia, we had the chance to carve pumpkins...

For some reason, Nate was insistent that he LOVED baked pumpkin seeds.  So we carefully cleaned out those pumpkins and baked them up in the oven and...he wouldn't go near them!  He is such a silly little man!  We ended up spending Halloween on the Southside at my mom's in Mt. Greenwood.  Nate had a blast playing with Ya-ya and I had an opportunity to take a nice run around the old neighborhood.  I enjoyed it SO much!  It was a gorgeous fall day and so many homes were decorated for Halloween - it was nice.  Then we headed over to Tammy's for some trick-or-treating.  I knew we were going to have problems with Nate from the beginning.  He hates candy.  And therefore - he has no interest in trick-or-treating.  Seriously.  The only child in the world who does NOT want to trick -or-treat.  He wouldn't put his mask on, wouldn't go to the doors of the houses and made it about 4 houses and across the street before we turned around, packed up the troops and headed home.  Finley on the other hand LOVED her costume....


A couple weeks ago, I had mentioned that I had some exciting Finley news to share and below is what I was talking about.  Some folks at the CHARGE Foundation had asked me if they could use Finley's story to help kick off the 3rd Annual Charge it for CHARGE campaign.  The e-mail below went out on October 21st to all of the Foundation members - their hope is that sharing a "People Like Me" story would help motivate people to participate in the fundraiser.  I have to say - I was so honored to have been asked to do this having only been part of the Foundation for a year!  Our little lady has become the face of the annual fundraiser and we are so proud!!!!

Finley was born on August 8, 2009. Ten hours after her birth, she was transferred to another hospital's NICU. The news of the many challenges that Finley faced started to trickle in. After her first open heart surgey and a trip back to the PICU, Finley's geneticist called. She had something called CHARGE syndrome. We were referred to the CHARGE Syndrome Foundation website as the best resource for immediate information. We spent a lot of time on the Foundation website that first couple of weeks. It provided us with tons of information and the immediate sense that we did not have to go through this alone. Soon after Finley's diagnosis, we joined the Foundation. When the email came about participation in the Charge It for CHARGE fundraiser, it seemed like a no brainer. What a great way to increase awareness and help the Foundation continue to create access to the best resources, research and information. Please support the CHARGE Syndrome Foundation as they kick off their Third Annual Charge It for CHARGE fundraiser and consider the impact you can have on the future of the Foundation and all our families. Tracy Roth

Another update on the fundraising front.  A couple of weeks ago I went to speak to the Arlington Junior Women's Club about CHARGE Syndrome with the hopes that they would select the Foundation as the recipient of the funds raised at their annual fundraiser.  It was a very cool opportunity and I was so happy to have been able to raise awareness about CHARGE.  Unfortunately we did not get selected - but it was with good reason.  The other organizations that presented were all so very worthy of the money and with each of those organizations, the money would be more directly impacting Arlington Heights and staying in the community, versus with the Foundation - we just don't have a lot of members in Arlington Heights!  But, we do now have a group of about 30 women who didn't know what CHARGE was before. Now they do!






Finally, a couple final things.  Yesterday I signed up for the Step Up for Kids stair climb on January 30, 2011.  That's right, I am climbing 80 flights of stairs at the Aon Center to benefit Children's Memorial Hospital.  Gina (Byers) and I did this several years ago - and so we know what we have in store for us.  At least we can take the elevator on the way down!  I will be posting a link to my personal page in case anyone is interested in sponsoring me.  






And the weekly Weight Watchers update of the week?  I lost 3 pounds last week!  That makes the three week total 7.4 lbs!  Which is great, especially because I think I will be giving some of that back this week based on how many bite sized candy bars I ate on Saturday and Sunday!  The good news is, said candy was sent home with Grammy yesterday so Pop-pop could share it with his co-workers!  Thanks Pop-pop!

Finley cuddled up in the Shanghai version of the Snuggie.

Have a great week!