Milestones

Its amazing to me that less than a year after I started this blog, its 10 hits away from 10,000.  YEY!  See all of this time between posts that has everyone checking back to see if I finally got off my a*s and posted has been good for this!  YEY for procrastination!



We have been enjoying having Finley home.  She never really missed a beat - even after 9 days in the hospital.  Her therapists have all been amazed how much energy she has and how much she has been willing to work for them!  Last week we finally got the results of Finley's last round of immunology tests and...they looked good!  The doctor said that while her values were in the low end of the normal range - he is happy with that and he said we can now go ahead and get vaccines that we had been holding off on - chicken pox and MMR - since they are "live" vaccines and not good for kiddos with immune problems.  Dr. Fuleihan did advise us to only get one of the live vaccines at a time - in case she has a reaction.  He seemed to think that from an overall immune perspective, she should be pretty good - of course he couldn't rule out that she might be more susceptible to some things now than if her immune system were 100% normal - but she is good enough that we only have to see him annually from now on!  


And now that Finley is healthy, Nate of course became sick on Friday night.  It seemed at first like he might just be battling a bad cold virus because of the runny nose and cough, but he was running a fever on and off for four days and after Monday when my little eating machine barely ate anything at all and then told me "his mouth hurt" - one trip to the pediatrician later and he had a positive strep test.  So now he's on antibiotics for 10 days.  And to use the most fitting analogy - getting him to take his medicine is like me trying to lose 50 lbs - damn near impossible.  And of course, Mike is out of town again all week, in Costa Rica (life is tough huh?), somehow it seems like without fail, one of the kids gets sick whenever he is out of town.  I can't wait to turn over medicine duty to daddy when he gets home : o )  And to put a nice little cherry on it all, I am starting to feel sick too.  When it rains it pours!




In spite of being sick this weekend, Nate still wanted to go to his ice skating lesson (we have a future Blackhawk here I am sure) and he did SO good  It actually brought a tear to my eye.  He is normally so nervous and doesn't want to do anything on his own but he has been SO good at his lessons.  I suppose the cute red head that helps Nate 1:1 isn't so bad either.  He loves Miss Ashley!


Finley was chillin' (literally - her nose was an ice cube) watching her brother skate.

An update on something that I mentioned several weeks ago.  I am so happy to say that the Children's Concert that the Arlington Heights Junior Women's Club organized to benefit the CHARGE Syndrome Foundation (drumroll please....) raised $1,328!!  This far exceeded my expectations but even beyond this - I am so, so grateful to have had the opportunity to meet so many other CHARGE families because of it. Thanks to EVERYONE who came!!!





And speaking of milestones - how do you like this!!!  This is precisely "didn't miss a beat" Finley I was talking about.  Pre-hospital, she was mostly staying in a 5 point position - post hospital, girlfriend has realized that there is a whole new world at this view.  And I am pretty sure she probably thought there was a strobe light in her face with as much as the flash on the camera was going off.  But I can't resist.  I don't want to miss these moments!

Full face raspberries - I am not sure why but it cracks me up EVERY time.


Last but certainly not least - I've just signed up for my first half marathon.  Yes, I am crazy - especially because I am certainly not in the best shape of my life - but a good goal to get there, no?  Ever since Gina and I volunteered at the Chicago marathon many many years ago, running a marathon has been on my bucket list.  This will be a nice stepping stone.  I just hope to finish : o )

More brotherly/sisterly love

Nate posing with his sissy in her new Tumble Form chair!

"Take a picture mom" which was followed by - take another, and another and another.  One day he hates the camera, now he loves it!  Go  figure.

We're back to wearing one sock people!  Got a teeny tiny speck of a boo boo on the foot and the  sock has been on for almost a week (except bath time).

This is the wreath I made.

Wednesday, March 09, 2011 | |

 

4 comments:

mary nunez said...

I love, love the pictures of finley in the crawling position! she looks so good tracy, I'm so proud of her god bless her always!

March 10, 2011 at 9:24 AM  
Sylvia said...

Oh my gosh - she will be standing on her own before we know it.

March 10, 2011 at 9:45 AM  
Annie said...

Those pics of your princess is sooo exciting!! Awesome news she's healthy and working hard :-) Nate is so handsome too....maybe a kids underwear model!?!?

March 10, 2011 at 1:49 PM  
Kurby Family said...

She sure did not miss a beat! Great pics! Sorry to hear Nate and you are now taking turns with a cold/not feeling so well. Glad Finley will be able to get her immunizations and things are looking up! Good luck on the half marathon goal! You can do it!

March 11, 2011 at 9:23 PM  

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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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