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!