Lots to say



Unfortunately its been seeming like weekly is about as often as I can update this blog these days.  I do try to do it more often but it tends to fall toward the bottom of my To Do list that seems to be as long as my arm these days.  I will say, I finally got through writing all of my thank you cards for Finley's birthday today.  Um yeah - two months later.  It makes me nauseous to admit that because I usually try to get them out much sooner.  So...if you have been waiting for yours...they are in the mail.  And I apologize!  Now I have to start on Nate's!

Mini-Family Hug! (Mike was taking the picture!)



The results are in!  We had to wait until today for the results of Finley's kidney scan - not because they weren't ready - because the doctor didn't call until today!  That left me wondering and worrying the last couple of days.  What if he wasn't calling because something was wrong and maybe they were going to call and have me schedule an appointment to review the results? My mind works in mysterious ways!  Anyway - the results were great!  No damage from the previous UTI (or was it?).  He said Finley's right kidney is smaller than her left, a congenital defect, but nothing to worry about.  Perhaps this runs in the family and is the reason why I have to go to the bathroom so much?  This explains a lot!  Needless to say - we got the green light to stop her antibiotic and we don't need to go back to see Dr. Cheng unless she winds up with another UTI.  Go Finley Go!

This looks interesting...

Nate doing his "Hillbilly Hand-Fishing" imitation and pretending my foot is a fish!

We also finally heard back from the endocrinologist today about Finley's feeds.  We visited right after her birthday and I had inquired about changing her formula - now that she is one.  Well, nearly two months later, we've been advised to start her on Enteral Pediasure.  Which unfortunately is A LOT more expensive than formula, but may give us the opportunity to stop the Polycose entirely since it has more carbs in it than formula.  We have to take the good with the bad unfortunately.  I am also looking into doing a partial blenderized diet for her.  I need to do some more research...more to come on that hopefully.



Something else that has been top of mind lately is fundraising.  Charge it for CHARGE is the fundraiser that the Foundation does each year.  The fundraiser kicks off in the fall and runs the entire year.  Families participate by setting up a personal page on the Charge it for CHARGE website.  Many of the people who read this blog regularly know all about it because so many of you have been so generous to give on behalf of Finley.  My original fundraising goal was $3,000.  When we reached that super fast, I increased it to $4,000.  the $5,000.  And finally the last goal I set was $6,000.  And as crazy as it is, we certainly never thought our campaign would be so successful.  But you know what?  We are sitting only $12 shy of our $6,000 goal!  Its unbelievable.  Anyway, with the close of the 2nd annual campaign getting ready to draw to a close, the Foundation is preparing to kick off the 3rd annual Charge it for CHARGE fundraiser at the end of October.  We have some big news to share about that.  But we cannot divulge it yet!

You don't want to know.



Anyway, I have been trying to think of other things we can do for fundraising and my eventual goal is to plan and execute a large scale fundraiser - but I need to think of a good idea that isn't already taken.  And since that will likely take a lot of planning, I was thinking that for 2011, I am going to plan a colossal garage sale where all of our friends and family can donate their new and gently used items to be sold at the garage sale and ALL of the proceeds will go to the Foundation.  I was thinking I will make some hair bows (my new hobby) that we can sell, maybe couple it with a bake sale and whatever else comes to mind and just make it a weekend of fundraising for the CHARGE Foundation!  As  much as I loathe the thought of hosting a garage sale - I think the fact that we will be donating all of the proceeds to the Foundation will make it exciting.  I am thinking we will do this in the spring - maybe May-ish before it gets too hot.  So if you are interested in donating some items, please start setting them aside!!

Hey lady.  Give me that paci!
Winner winner chicken dinner!


Along the lines of fundraising, I have a request.  Today I received a note from the Foundation about a website called iGive.  I recently read about iGive in a magazine and I tore out the article but never had a chance to log on.  Until today.  And ironically it wasn't because I saw the article sitting on my nightstand (where it still sits) it was because of this note from the Foundation.  For every person that joins iGive in the next 24 hours, they are giving the Foundation $1 each (until noon on Sept. 30). This is such a super easy way to raise money!  The premise is this - every time I shop online at any of their 808 participating stores (all of my favorites are on the list) I am raising money for the CHARGE Foundation (my charity of choice). And when I search the web through iSearchiGive.com (a search engined powered by iGive!), I'm raising a penny or more for my cause every time.  Since I do a lot of shopping online - especially during the holidays - I figure this should be a windfall for the Foundation!  Please consider doing this small thing to help the Foundation!  Here is the link:

http://www.igive.com/welcome/warm_reg_promo.cfm?m=638016
Piece of cake!



One final thing of note.  My company, Hewitt Associates, has been recognized by Working Mother magazine as one of the top companies for working mothers.  They asked Hewitt to solicit Working Mother of the Year nominations from our associates.  One day a month or two ago, I received a call from a gal in HR informing me that I had been nominated.  I was astonished.  The girl on the phone interviewed me, asked me questions about my family, my job, etc.  She said I would be notified of the outcome in a few weeks.  A week or so ago, I received another note saying while I hadn't won, I had been chosen as a finalist and they shared a link to a small article that they were going to be posting about me on our company's intranet site.  I was pretty sure that no one would read the article...until my manager forwarded it out to our entire market.  Since then, I have received the sweetest, most kindest acknowledgements from so many people.  All of these notes have really meant a ton to me.  And as crazy as all of this is to me, I think its really cool that someone thought to nominate me.  And you know what?  I still don't know who that person is!  They wouldn't tell me!  Needless to say, if that mystery person is reading this.  Thank you.  From the bottom of my heart!

2 comments:

Sylvia said...

Wow - great news on Finley! She continues to be amazing - just like her mom. Where do you find the time and energy to think about fundraising. Count me in to help with next year's garage sale/bake sale. Missed seeing Nate and Finley last week - darn cold got the best of me. It's at its peak right now.

mary nunez said...

awesome news about finley and you are one if not the best mom I know! I might have a few things I can give you for the garage sale!

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Finley's Medical History

Born on 8/8/2009 - Finley is taken to Children's Memorial Hospital via the transport team 12 hours after she is born.  She is having trouble breathing and is turning blue.  She is immediately admitted to the NICU.

8/9/2009 - Finley is diagnosed with Tetralogy of Fallot, a congenital heart defect and laryngomalacia, a condition that causes her to aspirate whatever she swallows in to her lungs.

8/21/2009 - Finley has open heart surgery to place a Blalock Taussig shunt to help facilitate proper blood flow.  When she is older, she will require a full repair of her heart.

9/10/2009 - Finley is released from the NICU.  Because of her laryngomalacia and reflux, she is fed 100% through a nasal gastric tube.

9/14/2009 - Finley is re-admitted to the hospital for an infection in her surgical wound.  Finley's genetic test comes back - she is diagnosed with CHARGE Syndrome.

9/15/2009 - During a CT scan to assess the infection, the doctors notice something strange on her CT.  It appears Finley has a malrotated bowel and will require surgery.

9/23/2009 - Finley is examined by the opthalmologist and she is found to have colobomas, a condition common with CHARGE Syndrome, in both eyes.  The degree of her visual impairment is unknown.

9/30/2009 - Finley has the Ladd's Procedure to correct the malrotation and also has a g-tube placed.  

10/7/2009 - Finley has a sedated ABR to check her hearing.  She has a mild hearing loss in her right ear and a moderate to severe loss in her left.  Her loss can be at least partially corrected with hearing aids.

10/8/2009 - Finley is supposed to be released from the hospital today but she has been having low blood sugars.  The endocrinology is called in to evaluate her.

10/29/2009 - Finley is finally released from the hospital with a unconfirmed diagnosis of hyperinsulinism.  Actual diagnosis requires fasting blood tests - because of her heart condition, it is not safe for her to fast.  She needs to have her blood sugar tested every three hours and we are taught how to administer an emergency glucagon injection in case her blood sugar gets to low.

11/1/2009 - Finley requires emergency injection because she cannot sustain her blood sugar.  She is taken to the local ER and transported via the transport team to Childrens Memorial.

11/10/2009 - Finley is discharged from the hospital on a 24 hour continuous feed.  We add polycose to her milk to help her keep her blood sugar at an acceptable level.

11/22/2009 - Finley is taken to the local emergency room with a bad cold - she is having trouble breathing and her oxygen saturations are low.   She is transported via the transport team up to Children's Memorial.

11/25/2009 - Finley is released from the hospital - just in time for Thanksgiving.

12/8/2009 - Finley is taken to the local emergency room for observation - she has a bad cold.

12/21/2009 - Nate is chasing the dog and the dog runs in to Finley's IV pole, knocks it down and pulls out her g-tube.  She is taken to the ER at Childrens to have it put back in.

2/10/2010 - Finley is admitted through the ER at Childrens - she has a bad cold again.  Oxygen saturations are low and breathing is labored.

2/13/2010 - Finley is released from the hospital.

4/17/2010 - Finley is taken to the ER at Childrens - she has pus draining from her belly button.  They suspect a urachal cyst - they send us home with orders to return on  Tuesday (during our scheduled visit) for an abdominal ultrasound.

4/20/2010 - Finley is admitted to Childrens for an overnight stay.  She will have a swallow study and abdominal ultrasound on Tuesday and a CT and sedated echocardiogram on Wednesday which will require anesthesia.

4/21/2010 - The anesthesiologists have trouble intubating Finley, so they call in her ENT to have a look at her.  He observes that her airway is 75% closed off - partially due to scar tissue from previous intubation and partially due to an infection.  The diagnosis is subglottic stenosis and may require her to have surgery on her airway.  She is immediately admitted to the PICU and put on a 24/7 breathing treatment and antibiotics and steroids to help reduce the inflammation.

4/26/2010 - Finley is well enough to be taken off of all oxygen.  Immunology and Infectious Disease are called in to examine Finley because the culture of her throat are growing staph and strep.  Infectious Disease is trying to figure out what could have caused her infection.  Immunology labs will be drawn to determine if Finley has an immune problem which sometime occurs with children with CHARGE.  This is the second significant infection she has had since she was born.

4/27/2010 - The lab calls to say that they mis-read Finley's airway culture.  It's not growing staph - its only growing strep.

4/28/2010 - Immunology labs are back and don't show anything significant.  Finley's lymphocyte counts are low but that isn't unusual for a child who is fighting an infection.  The doctor wants to re-examine her before her first birthday.  In the meantime she cannot have any live vaccines.

4/29/2010 - Finley is discharged from the hospital.  The ENT will do a bronchoscopy before her heart repair surgery to determine next steps on her airway issue.

5/11/2010 - Finley has open heart surgery to repair her heart.

5/17/2010 - Finley begins to show signs of infection which is later identified as a urinary tract infection.

5/25/2010 - Finley is discharged from the hospital.

5/30/2010 - Finley goes to the ER at Childrens because of fussiness, sweating, heavy breathing.  And echo later identifies that the pressure gradient around Finley's pulmonary valve is an astounding 90%.

6/1/2010 - Finley is admitted to Childrens to try a medication called Propranolol to help ease the pressure in her heart.

6/2/2010 - The Propranolol brings the pressure in Finley's heart down from 90% to 50%.  Finley has a positive test for C. difficile which will require antibiotic treatment.

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