We love you Sylvia!

This is Sylvia.  She volunteers for Clearbrook.  For those who don't know what Clearbrook is - its an organization that provides resources for children and adults who physical and learning disabilities.  Sylvia volunteers for the Take a Break program which gives parents like us a chance to get out and "take a break".  She spends time with Nate and Finley so Mike and I can spend time together or so that we can get things done.  Errands and stuff that aren't so easy when you are lugging an entourage of "stuff" around with you.  A couple of weeks ago Sylvia asked if Finley could appear in a video for Allstate's (Sylvia works there) Giving Program which encourages associates to donate their time and money to charitable organizations.  Sylvia and one of her co-workers who also volunteers for the Take a Break program appeared in the video to promote Clearbrook - and Finley was their co-star!  Anyway - there was also another gal that appeared in the video who asked Sylvia and her co-worker some questions about what they do for Clearbrook.  There was also another young man there video taping.  So they filmed the segment of the video and we were sitting there chatting and we were talking about raising awareness for CHARGE Syndrome and the guy filming said, "Wait.  What did you say your daughter has?"  To which I replied, "CHARGE Syndrome." What he said next blew me away.  He said, "My brother has that."  He went on to say that his brother is 25 and lives in a group home in Des Plaines, etc. and quite honestly I feel bad saying this but I sort of didn't believe him.  We are talking about a 1 in 10,000 frequency here - what is the chance that in this very random forum I would meet someone else who had such a close connection to CHARGE.  I doubted this poor guy.  I thought he was mistaken.  I asked him what his last name was and where his family was from.  Stricklin.  From Libertyvile.  So I go home that evening and I check the IL family list.  Lo and behold.  Stricklin.  On the list.  How amazing is that??  Obviously hind sight is always 20/20 but I really wish I had chatted with that camera man more. I wish I hadn't been in such disbelief and had taken the time to learn more about his brother.  It really is such a small world.

So what has been going on around the Roth household since we seemingly fell off the face of the Earth?  Let's see....I had a birthday.  (And for those of you who can appreciate it - I bought myself a new purse thankyouverymuch.)  I ran another 8K - albeit HORRIBLY.  Finley got glasses.  Nate started tennis lessons.  Wait.  What's that you say?  FINLEY GOT GLASSES???  Behold....




Okay.  Let's be serious here.  How cute is she?  I didn't think it was possible for her to get any cuter.  Boy was I wrong.  But seriously - I could have drawn a couple of circles around her eyes with a magic marker and I would have thought she looked so stinkin' cute.  Amazingly - she leaves them alone.  Which we believe (and her therapist does too) means that they must be working.  And if her vision therapy on Friday was any indication - I'd say we got confirmation of that.  The way she was interacting with Marla (her vision therapist) and the increased range of vision she had - she seems to really be benefiting tremendously.  Which, for a mama - is beyond words.  This little girl continues to amaze us every day and she does so much with what she has been given and we can really all stand to take a page or two from Finley's book.

Give the girl and inch and she takes a mile!  THIS is what happens when Finley is disconnected from her pump.  She doesn't crawl yet but let me tell you - she gets where she needs to go!

We also saw the cochlear implant audiologist last week (FINALLY).  I have to say though - I loved her!!!  She was so knowledgeable, thorough, compassionate and she really took a lot of time to answer our questions and help us to really understand what the evaluation process entails.  I can definitely see why Dr. Young leverages so much of the evaluation process to her audiologists - not to mention Megan (the audiologist) was much more.....how do I say...personable?  Don't get me wrong - I will take the fact that Dr. Young is the best of the best over a warm and fuzzy doc any day of the week.  But we like Megan.  She's a keeper for sure.  Back to the process.....we will likely have several more visits with Megan before any real progress starts to happen.  She adjusted Finley's hearing aids and attempted to test her in the booth without them which in Finley's eyes was a bit of a joke because it was obvious that Finley could indeed hear some of the sounds coming through the speakers - and while she couldn't localize the sound - it was quite obvious because Finley would start to laugh or do happy hands and feet when she heard something.  That said - the testing process might take a while until we can see if Finley will cooperate.  Then its likely to be more tests - like and MRI which will need to be coordinated with her upcoming bronchoscopy and another ABR.  So we are probably looking at a few months here.  We will be patient.  We have learned that sometimes we need to be very patient.




There are several other things going on over here and since its been so long since I last updated this blog - I know I am going to miss lots of them - so here are the most important:

One Sunday, May 1st - I will be participating in the MS Walk on Chicago's lakefront with our team Camille's Champs.  Our team was named after my dear friend Gina's mom Camille who was diagnosed with MS in her early 30's.  Camille was a beautiful woman who courageously battled MS for many, many years.  Sadly, Camille lost her battle with MS in March of 2009.  We walk to honor Camille and all of the other brave men and women who battle MS every day.  Gina has worked tirelessly over the years to grow our team and raise money and awareness for this special cause.  If you are so inclined, please join us on May 1st and walk with us!  We are a fun group and I forgot to mention one of the top fundraising team in Chicago.  Check us out!  To sign up to be part of the team or to make a donation go here!.  Additionally, Gina is currently hosting a Thirty-One fundraiser party and the host, Lisa Winkelman, has offered to donate all proceeds to Camille's Champs.  If you aren't familiar with Thirty-One - they offer adorable personalized bags, purse, baby items, storage items and so much more.  Super cute stuff.  Go to www.mythirtyone.com/wink.  Click on  "My Events" You will then be directed to a page where Gina's (Bavone) name will be listed.  -- Click on "Shop Now".  Do it! Its for an awesome cause!

Finley meet Tad.  Tad, this is Finley.

BFFs.

Also - at the end of May I am going to be having a garage sale and donating ALL proceeds to the CHARGE Syndrome Foundation.  I am currently seeking donations for the garage sale.  While you are doing that spring cleaning, why not set aside your previously loved items for the garage sale?  Instead of taking your things to Goodwill - take them to the Roth house (hell - we will even pick them up) for our garage sale.  Additionally - if you are crafty and have a special crafty talent and would be willing to donate some of your wares to the garage sale - we would happily accept your donation.  Personally I am planning to make a gazillion adorable hair bows and some crafty wreaths to sell.  Like I said folks - ALL proceeds are being donated to the CHARGE Foundation.  Not 80%.  Not 95%.  100%!!!!  So go home and clean out your closets and cupboards and toy boxes and ask your family and friends if they'd like to participate too.  No donation is too crazy.  And if you have something you can contribute - email me: Tracy_Yaiko@hotmail.com and let me know!


Last but certainly not least.  Children's Memorial is having their annual Race for the Kids on June 18th.  This is the 5K I ran last year for the hospital and I had contemplated starting a team in honor of Finley for this year's race.  The time is now.  Powered by Finley has been officially registered so come one come all and join our team!  I still have to set up our team page but if you want to join our team - go to the race web page: Race for the Kids and search for Powered by Finley.   Of significant importance is the fact that this is not simply a 5K race - you can also sign up to walk the 5K (that's 3.1 miles to you and I).  So please don't hesitate - sign up for the run OR walk today.  It will be fun! I hope to see some of you out there supporting Children's!


And so I guess this is what I get.  Its almost midnight on a Monday.  This damn post is forever long.  And I will surely be awakened with the need to suction Finley a couple of times overnight.  It shouldn't have waited this long to post and update!!!