Its hard to believe summer is over already and I haven't managed a blog post since July.  Suffice it to say life has been a little hectic lately and regardless of how many times I told myself I had to update my blog, something else always became a priority.  So today, my laundry is taking a back seat to this post.  Trust me, I'm not exactly heartbroken about that.

Since its been so long, I am going to try to organize this as best as possible and its going to be a picture bonanza because I've got lots.  Heck, its been so long that I even though I'd post the video I compiled for Finley's 2nd birthday.  I shared this on Facebook on her birthday but the entire reason I created it was to post it here.  So here it is!

The first harvest from my container garden!

Cicada stew!

Brother/sisterly love

In the interest of keeping this organized, here are the top few "goings on" in the Roth household since July  (in no particular order).

1) Mike and I attended our first CHARGE Syndrome Foundation conference in July in Orlando.  As my friend Paula would say, "It was Africa hot" while we were there but we really enjoyed ourselves (aside from my trip to the ER...more on that in a second). This was the first time Mike and I have gone on "vacation" by ourselves since Nate was born and we were one of the only families who didn't bring our kiddos.  While we did miss them a ton and wished they were with us, we wanted the opportunity to really immerse ourselves in our first conference - we knew we had tons to learn and that the schedule would be hectic.  The first day we met a couple of other families out by the pool and just relaxed and enjoyed the sun.  There was a nice reception that evening and the formal sessions kicked off the next day (Friday).  By the time we went down for dinner on Friday night, I wasn't feeling quite well and things began to get worse as the evening wore on.  After we attended the Conference Idol event (which I cried through) we headed upstairs rather than meeting some friends out by the pool for a couple of beers.  Needless to say, about the time we got up to our room, the full blown yuck started and I pretty much spent the rest of the evening in the bathroom - including passing out while vomiting - not once, but twice.  I'll spare the rest of the details but suffice it to say, by the time Sunday morning rolled around, I was in even worse shape and made a trip the local ER where the nice folks at Dr. Phillips hospital hooked me up to an IV and gave me some nice things to stop the vomiting, etc.  Funny enough, I found myself less worried about being sick and more worried about what sort of quality rating this hospital that the taxi driver dropped me off at had (darn my job in health care!).  Needless to say, this is what I was Googling in the waiting room whilst doubled over in pain and trying not to vomit.  Good times.  Happily, we did get to still enjoy a ton of the conference (which is good) we just didn't get to be as "social" as we had hoped - but that is okay - there will be lots more conferences and we are happy to say the next one is in Scottsdale, AZ!!  We hope to be able to make it a nice vacation and spend some time with my sister and brother in law and little DZ (they live in Scottsdale).  And in honor of Auntie Panda, Uncle David and DZ - a few photos of them....

Uncle David came to visit me one day when he was in town to surprise Aunt Panda.

Nate's best friend DZ and Aunt Panda.

2)  Both kids celebrated birthdays in August - Finley on the 8th and Nate on the 21st.  We had little celebrations for each the day of their birthday but given the craziness, and I am horrified to say this - we just had Nate's party last weekend. And it was super last minute because we had planned to do it the last weekend of the month but we had to move it up because Finley is scheduled for an MRI tomorrow (more on that to come) and so we worried, God forbid, if Finley doesn't make it home as expected tomorrow afternoon, the whole party thing could go out the window.  So, we moved it up a week and we are absolutely GRATEFUL that all of our friends and family were able to make it on such short notice.  We had a blast!  Now that Nate has officially had a party he finally considers himself to be "real" five.  Apparently he wasn't really five until he had a party.  I will post pictures once I have a chance to upload them : o )

Nothing better than celebrating the Princess' 2nd birthday (the Deerfield's cake is a close second)

3) Nate started preschool on September 8th and so far, its been hugely successful.  Our little man who we used to drop off at daycare every day a crying mess has been good to go at preschool since day one.  He is in the "Lion" group at school and he absolutely adores his table teacher, Ms. Rodriguez (who he affectionately calls Ms. Ma-riguez).  We are so happy to see that he's happy going to school and doing so well we feel confident that not starting him in kindergarten this year was a good decision as his experience in preschool already seems to be doing what we'd hoped - increasing his maturity, helping him to grow his social skills and making him more confident.  We love First United Methodist Preschool in Arlington Heights!

"Look at me!"

This scene has MENACE written all over it.  This was the beginning stages of Finley ripping that mobile down!

Caught in the act!

4)  One of the factors lending itself to our crazy last few months is Finley having tons of doctor's appointments.  While we are fortunately at  maintenance phase with most of her docs, we do have to check in with all of them every couple of month and those appts tend to hit right around the same time so we often find that we will have 2-3 appts/week for two weeks in a row. Then, throw a couple of unplanned pediatrician visits for colds, ear infections and the like and you have a recipe for not updating your blog in three months : o ).  I am happy to report that there is nothing but good stuff going on doctor wise.  Finley's echo at the cardiologist was great - no changes from the one she had 6 months ago and she also wore a holter monitor for 24 hours and that all checked out fine.  She also went to see the opthalmologist who told us that he doesn't think Finley will need surgery on her left eye (the one that was turning in) because the glasses seem to have done wonders for that.  YEY!

5) As I type this I am sitting in Finley's room in the hospital (THIS is what it takes for me to find time to post).  She is scheduled to have an MRI tomorrow so that her surgeon can confirm which ear will be best for implantation for her cochlear implant.  Yes - I said cochlear implant!  We got the good news at the beginning of September - that Dr. Young, the cochlear implant surgeon, has deemed Finley a good candidate for an implant and she wants to proceed with the surgery.  The immediate next steps are getting insurance approval (this is in process - I have been told that an implant on one side only can cost upwards of $100,000!), and getting this MRI which will confirm the particulars of Finley's cranial nerve structure.  I am definitely nervous about what they might find as this is one of the last "unknowns" we have at the moment about Finley and CHARGE Syndrome.  Cranial nerve abnormalities are very common and Finley has never had an MRI so this will provide us with that one missing piece of information. Frankly I don't what, if any "bad" news can come of this.  I suppose its possible she might be missing a nerve or two but in terms of the consequences of that happening - I don't know. I am just worried.  So, keep your fingers crossed.

So, as has been routine for Finley, we always have to be admitted the night before a procedure in which she needs anesthesia in order for her to get an IV and go on IV fluids to keep her blood sugar up because she's never been able to actually go "NPO" or without food because of her blood sugar problems.  Today we came with the purpose of actually try to have her go without food and monitor her to see if she can go without food.  The desired end result would be that she is able to maintain her blood sugar overnight so we can discontinue her continous feeds overnight. For some reason though, things never go off without a hitch and most often, that hitch seems to be that no one seems to believe me when I tell them Finley HAS to go to IR (Interventional Radiology) to get her IV because its IMPOSSIBLE to get an IV in her.  But yet again, they had up come in late, after the IR team was gone.  So then they tried the IV at the bedside and....didn't get it in.  DUH!  So change of plans now - we will what happens overnight.  If she isn't able to maintain her blood sugar, without the IV, they are going to have to feed her through her g-tube and thus her MRI will be delayed until later in the day - until she can get an IV in the morning and then go NPO for several hours before anesthesia.  We will see....

One very long winded post later, I am sorry its been so long and I appreciate all of you sticking with me and continuing to check this blog!  I promise I will update more frequently!

You read that right.  $3,200.  The garage sale that we kept putting off due to sheer fear of the quantity of "stuff" ended up netting $3200 for the CHARGE Syndrome Foundation!  We ended up having the sale on July 8th and 9th.  Mike got the pleasure of coming home from his 7 day business trip to Columbia and enduring a two day garage sale!  I have to say though - we picked THE BEST weekend as the weather was gorgeous - certainly a million times better than the pressure cooker we are living in today!!

The sheer volume of sale items was insane.  I am incredibly grateful to all of our friends and family who donated their stuff, their time, and who even came by to shop.  A special thanks to my mom, Tammy, Gigi, Margaret (my mother in law), Amanda Marshall, Annie Cue, Cari Miller (and her mom!), Colleen Creedon, Gina Byers, Liza Parke, Lisa Michalak and many others who made the garage sale a HUGE success.  We raised just over $1000 and with Baxter (Mike's employer) matching the entire $1100 check we wrote and Aon Hewitt (my employer) matching up to $1,000 - our little garage sale made $3,200 for the Foundation.  Not bad.  As much as I cursed myself for coming up with this hair brained idea - it was indeed worth it.  In fact, our very special garage sale was made even more special as another CHARGE family from the area - the beautiful Crystal Masionis and her kids Eva (who also has CHARGE) and Bailey and her girlfriend Sarah and her little man Charlie.  It was the first time I had a chance to meet all of them in person and they drove quite a ways from Round Lake Beach to visit us.  Eva is 6 and she is an amazing little girl who in so many ways reminded me of Finley.  Our two princesses have many of the same mannerisms and watching Eva was almost like watching a grown up version of Finley.  Here are a couple of pictures of the ladies.  I especially like the second one because it looks like Eva is telling Finley a secret (and she probably was)!

Its been a busy month as we've had tons of doctor's visits hitting at once.  I feel like we are finally riding the down side of the wave though and I have admitted more than once in the last few weeks that I have definitely bitten off more than I can chew lately but I am vowing that after the CHARGE Conference next week, I will be laying low for a while!  That said, the week before last I took Finley to her appointment with Dr. Chin, the pediatric surgeon.  The visit was to address what course of action we'd take on her hiatal hernia.  Dr. Chin ordered a upper GI so that we can assess exactly how big the hernia is and then he will be consulting with Dr. Holinger (her ENT) and Dr. Bass (the GI doc) to get their opinions on how successful they think doing a Nissen Fundoplication would be for Finley.  Dr. Chin explained that normally they would not surgically correct a hiatal hernia for someone with no outward symptoms of reflux but since the reflux is exacerbating her airway issues, Finley may be a good candidate.  We will certainly not be rushing in to anything though.

Finley is getting around so well these days, the feeding pump, nor anything else seems to stop her.  When we brought her home on a continuous feed - we joked that if we had to eventually follow her around with the feeding pump we would if that meant that she was mobile and most days - that's exactly what we are doing!  The good news is that she is eating exceptionally well and able to be off her pump for most of the day now since she's tolerating bolus feeding so well.  She is making tremendous progress and we are just sitting back and watching in amazement!

Finley's PT brought this old school walker to see how she liked it.  She didn't know to move her feet but she sure loved standing in it!

On Thursday of next week (the 28th) Mike and I are heading to Orlando for the CHARGE Syndrome Conference.  Its a bi-annual conference and it will be our first and we are so excited (Okay - me definitely more so than Mike - he doesn't get as jazzed about these things as I do)!  I love seeing all of the posts and messages on Facebook from all of the other families that are going.  So many people that we've never had an opportunity to meet in person - not only families who have children with CHARGE - but many, many individuals that have CHARGE - young and old - it will truly be an experience like other!  The only trouble I foresee is that there are SO many incredible sessions scheduled - I worry that we won't possibly be able to get to all of the ones we want to.  This will however be the FIRST time Mike and I have ever been away from the kids overnight.  Yes, its true.  In nearly five years Mike and I have never had an adult only vacation or even sent the kiddos to the grandparents house for a sleepover.  So we are nervous.  Not that we are worried anything bad will happen, we are worried that Nate might be a basket case.  I hope its not a long 4 days for Gigi and the grandmas!

Gigi and her girl!

Nate trying to beat the heat!

No joking - he fell asleep like this on the stair after a long day at the garage sale!

Nate wearing my boots (note the foam sword tucked in to one)

Nate's bowling field trip - Daddy was a chaperone!

This picture did a good job capturing Nate's face of disgust when it was time to go home!

The sunflower that Nate planted at camp.

My beautiful tomato that I am waiting patiently to ripen!

The basil plant I nursed back to life.  Can't wait to combine this with the aforementioned tomato and some fresh mozzarella! (That is rosemary and a pathetic lavender plan in the background)

I hope you all are enjoying the summer and staying cool!

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.