Happy Thanksgiving!  I am up at the crack of dawn so that I can do my pre "stuff my face" run - which will include decidedly less stuffing since  I have made decent progress at Weight Watchers over the last month and am not willing to give back any of my recently departed 10.4 lbs!  I did however make this little gem last night that I only hope tastes half as yummy as it looks...

And jelly.  This is what Nate told me the other day.  These funny little Nate-isms - they are part of our daily life these days.  Four is such a great age.  So was three for that matter!  And of course, I have always said I was going to be that parent who, when their child says something entirely inappropriate, I am unable to stifle my laughter.  Yeah. That's me.  So you can imagine then how many times he told me the other night that he was "allergic to boobs!" Somehow I think he will be singing a different tune when he's a little older!  His other new fascination?  His "junk".  Yep, that's what he calls it.  Courtesy of daddy.  Seems we are frequently having conversations these days about how its in appropriate to talk about his own junk in public - much less mommy's or daddy's.  Ah...little boys!


Last week's vent on this blog actually gave way to a very good week around the Roth household and served as a very important reminder for me that I need to be patient and not automatically expect the worst and hit the panic button.  I do this a lot.  I have been conditioned to think that every little cough, vomiting spell, etc. most certainly must be a sign of something bad.  But again it serves as a reminder for me of something we have said since the day Finley was born - we need to treat her like we would treat her if she didn't have CHARGE Syndrome.  And this applies to us too - not panicking at the slightest sign of something.  Lesson learned.  I will try to get better at this!

Not the greatest picture of Finley - but a good picture of her outfit!  I had to post this one for Amanda since she gave us this adorable skirt!  This was the first time Finley has ever worn denim - much less a skirt too!

Anyway - the kids both had great weeks.  For the moment, the bugs seem to have made their way out of the Roth household and we are re-reinforcing the hand washing/hand sanitizer rule - just to make sure its tops of mind for all of our visitors - we have a lot of therapists coming in and out of our house!  Speaking of which, Finley had her annual Early Intervention evaluation yesterday.  This is a time when all of her therapists gather, they write reports and comment on where Finley is delay wise and in relation to the goals we set at the last go-round.  The purpose of the meeting is to re-set goals as appropriate and evaluate the need for any new services or assistive devices - and while I know the genuine purpose of the meeting is good - as a parent - its nerve wracking.  Its nerve wracking for us to receive reports from our 7 therapists who in advance of the meeting all have to do evaluations, fill out questionnaires, etc. to determine Finley's progress.  And then that day you sit down to discuss all of these reports and as you flip through them, you see there in black and white what percent delayed Finley is in all of these different disciplines.  Here is the deal.  When it comes to Finley - a part of me likes to be blissfully ignorant.  The glass is always half full - and frankly I don't think I a doing myself a disservice by approaching things this way.  If I were to get hung up on these details - like Finley being 57% delayed in language comprehension - it might sink my boat.  I choose to live in the moment and one day at a time and I feel that as long as we endeavor to have our best day every day - we will get there.  Whether its when she's 3 or 13.  We will get there.  And so after these meetings, I review the reports once or twice more and then I tuck them away and move on.

THIS to me is progress!

This weekend in the Roth household will be focused on preparing to decorate the house for Christmas!  That's right boys and girls - I put the tree up the weekend after Thanksgiving every year because I like to enjoy it for a full month.  Last year, we got a real tree for the first year because our tree was in storage because of our construction project.  It was the first time my ENTIRE life that I had a real tree.  I HATED IT!  Sorry to all of you real tree people out there - but aside from the night we dragged that thing in to the house and set it up - that "fresh tree smell" never wafted through my house!  And although I watered that thing religiously every morning and again at night if necessary - like it was my job - that darn thing dropped needles like CRAZY to the point that as we neared Christmas - it was starting to resemble the Charlie Brown Christmas tree.  No thanks.  I will not do that again.  And while my tree is STILL in storage (that's right - construction has been done since March and we have STILL not emptied the storage facility) I am going there this weekend to drag that thing out and getting ready to decorate!  That also means the arrival of Nate's Elf on the Shelf "Inny".  Oh how I love that elf and the fear of Santa this time of the year!  I am also planning a nice crafty wreath project for the weekend if I can fit it in.  Depending on how it turns out - I may post some pics!

Finley playing in her favorite blanket - see how she puts her fingers through the weave of the blanket?  I love that!

Whoo hoo!

Hope you all have a wonderful weekend!

We just got back from Finley's 15 month old pediatrician visit.  Right about now I am pretty darn grateful that Finley still can't have live vaccines - that would have meant that she would have been due for 6 shots - which would have meant that we'd be taking a separate trip to the doctor - I wouldn't subject her to that.  She had a good check up - and in spite of her chubbiness is hanging right around the 50th percentile for height, weight and head circumference.  Today she needed to get her tetanus booster - which was needed so we can have her immunology work up re-done to assess if she is making t-cells and antibodies to the booster.  Then she also had to get her flu shot and her RSV vaccine which would up being in two doses because of the amount of vaccine that had to be given.  That meant two shots in each leg.  Needless to say my little princess is snoozing already.  That fifth shot?  It belonged to Nate and boy oh boy you should have seen him when he found out her was getting a shot too.  He was crying so hard for like 20 minutes before he even got the shot and was saying, "getting a shot makes me want to cry my eyes out!".  He ended up crying more than Finley.  Clearly he's already brushing up on his "guy skills" of milking these types of situations for all the sympathy he can get.  Of course I gave it to him because he was just breaking my heart!  One Happy Meal later and that flu shot is but a distant memory.  That is...until he remembers later that he got it and he limps around for the rest of the night!

Its been a bit of a frustrating week in the Roth household.  I am just so tired of seeing Finley seemingly start to get well and then all of a sudden regress.  She seemed to be getting over her cold nicely over the weekend and all day Monday.  Tuesday rolls around and she is coughing like crazy and throwing up.  So was the vomiting a result of the coughing?  I think we finally figured out that she likely had the stomach virus that Nate had 4 days earlier (the Friday before Mike got home from Australia - Nate was up from 9:30 pm to 5 am vomiting - pretty much non-stop.  No fever or anything else.  Just vomit.  Just like that thing they keep talking about on the news!)  Once we changed her to an apple juice/Pedialyte mixture through her g-tube - she was fine.  Then once I restarted the Pediasure, oddly enough, he coughing resumed and she seemed to be really mucousy again.  So that got us thinking maybe the Pediasure was making her junky and after she coughed so hard overnight she vomited again - I changed her to straight apple juice to test that theory - and the coughing has been virtually non-existent all day.  So its frustrating.  It feels like there are so many balls in the air - that there could be so many factors coming in to play and that there could very feasibly be SO many things going on.  I just want her to be healthy for a good stretch of time.  No suctioning.  Nothing.  I know that might be an exercise in futility, but I want to figure this out.  And its frustratingly hard when you have so many doctors - its hard to know which one she should see first.  And there are other things too.  Other frustrating factors that I am trying to figure out.  Its just been one of "those" weeks.  I am trying to keep a good perspective.  I read this quote on another blog today and its a very good representation of how I try to manage all of this stuff.  And a good reminder that its just been a bad week and that I need to move on.

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!