The picture-less post

I've had other picture-less posts before - but not when I've had a camera full of great pictures.  I've lost my camera's PC interface cord.  I figured it out a couple of days ago (hence the vintage pictures of Nate) but I was hoping it would turn up by now.  It hasn't.  And so it looks like I am going to have to buy one - and my camera is quite old - so I hope its not too hard to find one.  Its probably hanging out with my missing iPod shuffle and missing eye cream (yes - eye cream).

Saturday I ran in the Children's Memorial Hospital second annual Race for the Kids which benefits the hospital.  It was a 5K run/walk and the first 5K I've run since before I got pregnant with Finley.  I was just hoping to finish it given that I've only been running again for a month or two at most averaging 2 times per week.  The good news - I finished.  I averaged about a 12 minute mile but there were plenty of other people in the back of the crowd with me and it was a lot of fun - we ran on the gorgeous lakefront path and next year I hope to have a team in honor of my beautiful princess.  Here's the nerdy part.  I found myself tearing up a couple of times before the race.  First - I had lined up at the start behind several people wearing t-shirts with a picture of a beautiful little boy on the back and they read, "Caleb Jacob Tokarski 4/6/2006 - 4/12/2010"  He was Nate's age.  I started crying.  Then they had a special guest kicking off the race.  He was an 11 year old cancer survivor.  I started to cry.  I was looking around the crowd to see if there were any others like me.  There weren't (at least that I could see - haha).  That is when I decided I wanted to have a team.  Finley deserves a team.  And so next year - she shall have a team!!

Saturday night was equally as special - Finley had her first official outing.  A lot of our friends and family know this - prior to Finley's heart repair surgery - we didn't really bring her out of the house. Not to the store, not to friends/family's house.  The only place we EVER took Finley was to her clinic appointments or to the hospital.  You see,  Finley came home from the hospital at the start of cold and flu season (November).  We wanted to keep her as healthy as possible leading up to her surgery.  And so as crazy as it was - we never took her out.  We didn't want to take the chance that she'd get sick because we weren't certain how her little body would handle it.  And in spite of never taking her out - she came down with three colds - all three required trips to the ER and two resulted in hospitalizations.  Unfortunately as vigilant as we were trying not to expose her to anything, the reality is that Nate goes to daycare and is exposed to a ton of junk there and she has 5-7 therapy sessions a week - as adamant as we are about hand washing and using sanitizer - it doesn't prevent everything.  So anyway - while Finley has had a couple of brief trips to the store and such since she's been home - this was her first true outing.  We went up to Grayslake (our old stomping ground) to visit Mike and Susie Rowan and their son (and Nate's friend) Quinn.  We put Finley's mats out on the patio and she rolled around with the warm late afternoon sun shining on her and we sat in their lovely backyard and enjoyed the evening watching the kids play.  We enjoyed ourselves as much as the kids did and the smile never came off of Finley's face!

And so Father's Day began the same way my evening ended last night.  Pretty much as soon as we walked in the door last night - I got a sharp shooting pain on the left side of my head and it was quite literally one of the worst, if not THE worst headache I had ever had.  I even skipped pumping, took two Tylenol PM and went straight to bed.  I woke up to do Finley's feed several hours later at 4 am and NONE of the pain had subsided.  It was crazy.  When I woke up this morning, it was slightly better, but I just felt completely exhausted.  Like barely functioning exhausted.  So as soon as Mike came home from the gym - he sent me upstairs to rest.  I slept for an hour, tried to get up, and then ended up going back to sleep for two more hours.  Fortunately, while I didn't end up getting up until after 1, we spent the day together as a family and for dinner I made a new Crunchy French Toast recipe (that we were supposed to have for breakfast) and then later this evening we celebrated Father's Day with the cake that Nate picked out that said "My Dad is a Super Hero" and we sang Happy Birthday.  No.  Its not Mike's birthday but Nate thinks that every cake is a birthday cake and that eating cake = singing Happy Birthday.  Gotta love it. Who doesn't love a special rendition of Happy Birthday every now and again?

And so I've decided that this post won't be a picture-less post after all.   In honor of Father's Day and in celebration of Mike who is one of the most amazing dads of all time - one of my favorite pictures of all time.  Happy Father's Day!

1 comments:

Annie Cue said...

Love the old pics Tracy! It's so unbelievable how fast they grow up...Nate is a little man compared to the recent pics. Amazing :-)

Powered by Blogger.

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.

Followers

  

Get a playlist! Standalone player Get Ringtones