I have a lot of things swimming around in my head right now and among all of those things, a title for this post was no where in sight so this is as good as its going to get!


Lots of updates as it has again been forever since my last post.  We still haven't had that garage sale - UGH.  My garage and basement are swollen with the tremendously generous donations from our friends and family so THANK YOU!  We had to postpone it a couple of times because its been difficult to find the time to get everything ready.  But - at this point I have overwhelming motivation to get it done because we can't park on one side of the garage and so I think we are now shooting for the weekend after next...


Our team, Powered by Finley, participated in the 2011 Race for the Kids last weekend to benefit Children's Memorial Hospital.  We had a GREAT team which even included Finley's primary nurses from 5W and from the looks of the picture below - Finley was happy they could participate!  Thank you from the bottom of my heart to everyone who came out - it was a beautiful day!

We have been very busy with doctors appointments of late - them seem to ebb and flow like this - we will go a couple of months with a smattering here and there and then at all once, she comes due for a bunch of them and Mike and I find ourselves needing to divide and conquer.


Two weeks ago Monday, Finley saw the opthalmologist, Dr. Yoon, who was impressed with her glasses and the improvement of her nastagmus (sp?  Shaking of her left eye) but her left eye is still fairly lazy and Dr. Yoon wants us to come back in 3 months to check it again as he may want to do surgery if there is no improvement by then.  We definitely weren't  expecting this because we thought that the correction of her eye would be more cosmetic, in which case we would opt not to do it at this time - we will be having some additional discussions with Dr. Yoon on this front.

This was my view from the rocking chair of Finley chillin' in her crib.

We are frequently meeting with the cochlear implant audiologist.  Finley is trying out some loaner hearing aids that are more powerful that her previous ones and we've definitely seen some changes in how she is attending to different sounds.  This is obviously really good news but the wild card that remains is understanding how well she's hearing them - how loud and how clear things are.  Next we will be going for testing on her new left hearing aid and this will be particularly interesting because her left ear is the one that has the profound loss.  More to come on that...



Finley was having some trouble gaining weight for the last several months and so we took her in the week before last for a weight check.  I am happy to report that in the last 4 months she has gained almost 2 pounds and grown another inch!  This is largely attributed to the fact that girlfriend likes to eat (as evidenced below).  We have recently begun pureeing table food for her which means that she is eating a lot of what we eat now and she is really liking it.  She also LOVES chocolate chips cookies - which is what she was eating in the below pics - that is chocolate all over her face!  We finally got in her for another swallow study last week - it had been over a year since her last one - and she passed everything through honey thick liquids.  This is a great improvement for her and we think she actually would have done even better had we practiced some thinner liquids before her test but we were too nervous to give them to her.  Now we will work on syrup thick, nectar thick and and then regular thin liquids.  She is also doing really, really well with her bolus feeds and is up to 120 ml/hour (4 ounces) and then she's able to be off her pump for a few hours!  We are still finding though that the bolus alone doesn't seem to sustain her for the whole 3-4 hours off the pump and that we need to feed her in between to keep her blood sugar where it needs to be.  She has been able to spend most of the day off the pump though beginning in the morning and then going back on the in the evening.  She has become quite mobile in spite of the fact she isn't formally crawling yet but it doesn't matter to Finley - she either bunny hops (her modified version of the crawl), rolls or scoots on her back!  



A week ago (on Father's Day nonetheless) Finley was admitted for what we affectionately refer to as her 6 month "tune up".  This is the same testing she did in December where she had a bronchoscopy to look at the condition of her airway but this time she also had an endoscopy - and this was to see if the doctor could determine the cause of her reflux.  Her ENT, Dr. Holinger, shared that there was no change in her airway.  While it hadn't gotten worse, it also hadn't gotten better even in spite of the change in her medicine regimen.  This was a bit of a bummer because he said she still has chronic bronchitis - not like the kind that can be treated with antibiotics - chronic inflammation of the brocchioles due to irritation cause by the reflux of her stomach acid.  Her endoscopy on the other hand showed that she has a hiatal hernia which is likely the culprit causing the reflux and her GI doc, Dr. Bass, suggested that the best way to correct this would be Nissen Fundoplication (read: more surgey).  The Nissen is a procedure where they go in and sort of tie off the entrance of the stomach making it possible for things to go in but not come out.  While this seems straightforward enough, they don't always work - sometimes they tie them off too tight, sometimes not tight enough.  That said, we have an appt with the pediatric surgeon, Dr. Chin, on July 7th to discuss options.  Finley did great with her testing in spite of the sub par planning on the surgery coordinators and she was able to come home later on Monday as planned!  YEY!


Mr. Nate is growing by leaps and bounds and every single day he says or does something new and stops me in my tracks and makes me think about how fast he's growing up!  He is now in his second session of tennis and he's actually participating with the coach (and even hugging him on occasion!) and he started tee ball a couple of weeks ago and is doing AWESOME with that!  He's been my big helper in the yard this summer too as I have been working on getting some perennials planted around the yard.  When my peonies were getting ready to bloom - he was on peony watch for me and would check them EVERY day to see if they opened (see below).

Nate has been enjoying picking out his own clothes lately.  Here is his rendition of the "Green Lantern".  We're not quite there yet on the matching but he's getting there....

If there was one thing I could photograph every time it happens it would be this.  Finley loves to touch Mike's unshaven face and she takes his cheeks in both hands and pulls his face close to hers and then proceeds to go crazy and laugh!  Its the best thing in the world!

Nate with all of his soldier guys lined up on the window sill.

I had to share this final series of pictures because of Finley's hilarious obsession with the big orange ball.  This is an exercise ball that she uses for her therapies and when its sitting out, Finley will pursue this ball like its her job and frankly nothing with stand in her way - not even the fact that she is hooked up to her feeding pump!  Once she sets her sights on it, she gets to it however she needs to (per my previous comments above) and she mauls it.  She loves to lie there and put her feet all over it but most of all - she likes to lick it - if you look closely at the last picture - you can see her little tongue is out and she's ready to pounce!






The CHARGE Conference in Orlando is just about a month away now and Mike and I are all set to go - we are registered and our room and airfare is booked!  We are even going to stay and extra day so we can spend some time with Mike's Aunt Ruth and Uncle Fred - we are SO excited!  I just wanted to say a HUGE thank you to everyone who has donated items for the silent auction - I cannot possibly tell you how much I appreciate it!  I have been working with the folks at the Foundation to try to secure items for the auction and I was SO SUPER EXCITED that I ended up getting 2 round trip tickets from Southwest Airlines!!!  This came after I was receiving email after email of rejections and was frankly getting pretty discouraged.  That said if you or anyone you know might be interested/able to donate items for the auction - gift cards, merchandise, crafts, anything - please email me (Tracy_Yaiko@hotmail.com).  The silent auction at the conference is one of the primary sources of revenue for the Foundation (Charge it for CHARGE being the other).  So please - if you are able to help out that would be tremendous!  The conference is July 28th - 31st in Orlando so I would just need to receive the donation sometime before then.  THANKS!  

I am fairly certain there is probably not a soul reading this blog anymore as I realize that it has taken me forever to update it.  I am sorry but things have been a little out of control lately - work, life, you know...pretty much everything.  I've not had any time for well....anything really.  Exactly how long has it been?  Well - sometime between my last update on April 18th and today, Blogger completely reformatted their site - it took me about 5 minutes just to figure out how to do a post. The benefit of taking so long in between posts though is that this one will be a Picture Palooza!

As I mentioned, things have been busy.  Finley has been to the endocrinologist and unfortunately - she hasn't gained any weight in the last 8 months.  Her doctor reached out to the dietitian, whom I have not talked to directly yet, but she left me a message that seemed to indicate this didn't trouble her too much.  Meanwhile, we are working hard to try to fatten Finley up.  She is gobbling up her food like its her job and I went out and bought a Magic Bullet today so we could start semi-pureeing some regular foods (instead of baby foods) for her to eat so she can get a little variation and more calories.

We've also been to the audiologist and she took new ear molds for Finley's hearing aids.  She also moved her high power left aid to the right ear and gave us another high power loaner for the left ear.  We've not been able to try it yet though because she accidentally broke Finley's hearing aid mold on the left and so we will get the new ones tomorrow.  She also finally tested well in the testing booth and the results were exactly consistent with her ABR that she had in December (which is good).  Tomorrow she will see the audiologist again to get her new molds and be tested in the booth again - this time with her hearing aids in - and she will also have some bone conduction testing done.  And by the way - we LOVE our new audiologist Megan.  There is such a difference between Megan (from Children's) and the one we were seeing at Lutheran General.  Although we liked the last one - Megan is just completely of a different caliber.  YEY!

Finley rocking a pony tail.  Which didn't last long once she laid down on it and pulled it all out.

Finley and her boyfriend Tad.  She will do anything for that chubby green frog.

"Hey Ms. Marla - I can see this book now!"

We had a great Easter at my mom's house.  The day before, Nate and I enjoyed coloring Easter eggs.  I made a point of trying to take a bunch of pictures there because frankly I just forget most of the time.  I got lots this time!

Nate's Easter masterpieces

Uncle Javy and Viola

Silly Lily

Auntie Tammy and our Princess

Can't see.  Sun. In. Our. Eyes.

Trying to get a picture of me and all of the girls was nothing short of comical as you can see.

Well - at least we are all in the picture

Momma and her sweethearts

One of the best pictures ever.

This was a picture my brother in law Jim took imitating my mom's picture taking ability

Much better!

I am a sucker for babies who sleep with their butts in the air.

Long day at Grammy's.  This is what the back seat looked like on the way home.  But the peace didn't last....

When we got home, I turned on to a circus clown and tried my hand at making balloon animals.  Balloon kit courtesy of Auntie Tammy.

In case you were wondering what granulation tissue looks like - here it is.  This is actually a picture I took and emailed to the g-tube nurse at Children's and she confirmed my diagnosis and called in a prescription and saved me a trip to the city!  Thanks Teri!

Nate getting ready to chop down the light pole in the backyard.

This is one of my most favorite pictures ever.  I didn't take it - Mike did. I picked up my camera one day and was looking through my pictures and I found this one.  Love it!

Nate cuddling with his sissy.

Hilarious picture of Finley sleeping.  She looks like she's posing.

Let's see.  Other things that have happened since I last posted...I have postponed my garage sale because I started getting anxiety about being ready by the end of the month.  It was impossible.  So right now, we are targeting the second weekend in June.  Thank you to everyone who has donated things for the garage sale: Mom, Tammy, Cari, Amanda and Gigi and to all of those who have stuff coming!  Anyone out there who is going to be doing some spring cleaning let me know if you are interested in donating!

I am also currently working on collecting items for the silent auction that will be held at the CHARGE Conference at the end of July.  I have been sending letters, emails, proposals, you name it.  Its absolutely crazy to me how restrictive some organizations are in terms of only donating to specific charities, need 6 months lead time, etc.  Nuts.  Anyway, I hope some good donations come out of this.  If any of you reading this would be willing to make a donation - please email me (Tracy_Yaiko@hotmail.com) and I will send you more details.  Also, if you know someone that might be able to donate - by all means ask if they are willing to contribute.  Some of the things that people can donate - season ticket holders can donate a pair of tickets for a game, un-used airline miles, gift cards, etc.  Other things to consider - themed baskets, etc.  Again, if you or someone you know is able to contribute - please let me know!

TTFN.

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!!!

Its been a long and germ-y couple of weeks in the Roth household.  I am currently finishing my own round of antibiotics after Nate was kind enough to share his strep throat.  Strep throat is something I have NEVER had.  This was something my sister Tammy always had growing up - never me.  So when the gal at the Minute Clinic cultured my throat last Thursday - I assured her I didn't have strep.  Six minutes later...I had strep.  Happily I am three pills away from finishing my Amoxicillin which has been wreaking HAVOC on my stomach.  Wah wah wah.  Complaining is over.

I was however still able to run an 8K last weekend.  I have set a goal to run at least one race per month until the half marathon in August.  Next up is the Shamrock Shuffle on April 10th!

Finley working with one of our favorite therapists Debi.  We love her!

Nate (in his undies of course) helping out during Finley's OT session.

Debi working her magic with Finley

In spite of the fact that Finley did indeed end up catching my cold, it was originally masked by the fact that she had two molars break through in the same day last week - so we thought the runny nose was attributed to the teeth.  And then it hung around.  But she is definitely on the up swing now and three of her therapists have commented this week about how her sessions with them were some of the best yet.  She is full of energy (as well as sassiness) and she has been moving and groovin' all over the place.






And so we wait with baited breath for spring to actually, well.....SPRING!  Mother Nature needs to stop teasing us and get on with it.  I am actually dying to plant some flowers and try my hand at a mini container garden (that I have been planning to plant for years and I never get around to it).  Some tomatoes, a little basil, maybe some sugar snap peas.  And hopefully a little landscaping around the patio in the backyard.  Perhaps I should get around to touching up the paint on the ceiling in my bedroom too.  After all, its been a year since I painted it and there are still little pieces of blue tape marking the spots that need to be touched up.  How's that for procrastination!