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My Baby Journal
 
DateTitle
09/18/2008Harlie is now a WALKER!!
09/15/2008Hearing Harlie
09/14/2008Some Belly Shots
09/13/2008Harlie whining
09/10/2008Bronch Results
09/08/2008Harlie Walked!!!
09/07/2008The furniture is painted!
09/05/2008ENT Appointment and Results
09/03/2008New Schedule, new routine
09/01/2008OUCH!!!
08/28/2008More Vacation Pics
08/26/2008Pulmonary and Nutrition
08/25/2008She can stand!
08/24/2008Daddy was in charge...
08/23/2008Baby Furniture
08/22/2008Guessing Game
08/21/2008Feeling sad for a friend...
08/19/20083rd Heart Cath Results
08/18/2008Heart Cath Tomorrow
08/17/2008Surprise Baby Shower
08/15/2008She Swallowed!!!!
08/13/2008Murphy is miserable
08/11/2008Murphy's Surgery and Harlie took some steps!
08/10/2008Murphy's Surgery and a little vent
08/07/2008Happy Harlie
08/06/2008She's Wireless!!!
08/05/2008Just a few more hours...
08/04/2008Tomorrow's the BIG day!
07/29/2008Last summer memories...
07/27/2008Check out my new Blog
07/24/2008Speech therapy and feeding stuff...
07/23/2008Fun Day
07/22/2008PECS and other stuff...
07/21/2008My Dad and Other Updates
07/15/2008Baby Three Update
07/14/2008We're baaack!
07/06/2008Going on Vacation!
06/30/2008Quick One...
06/26/2008PECS - speech therapy
06/23/2008Bad day/Good day
06/18/2008New pics
06/17/20082 weeks down, 7 to go...
06/16/2008Quick Update
06/11/2008Moving along...
06/09/2008Post-Op Day 6
06/07/2008Post-Op Day 3
06/06/2008Post-Op Day 2
06/05/2008Post-Op Day 1
06/04/2008Jaw Surgery Info...
06/03/2008Surgery Status Reports
06/02/2008Surgery tomorrow!
05/28/2008Another first...
05/23/2008We have a surgery date!
05/21/2008Quick Update
05/19/2008Harlie's happy and doing well.
05/16/2008We're Home!
05/15/2008Post-Op and Baby #3 updates
05/14/2008Surgery Updates (and plastic surgery info)
05/13/2008Oh boy, are we in trouble...
05/11/2008Mothers Lie
05/09/2008Fetal Echo Appt.
05/07/2008Update
04/30/2008My Rant.
04/28/2008Nissen surgery, NOT.
04/27/2008Nissen Surgery Tomorrow!
04/22/2008She Grew!
04/20/2008Uploaded Videos
04/17/2008Ultrasound #3 - So far so good!
04/15/2008ENT appointment details
04/13/2008Still no oxygen at night!
04/10/2008No Oxygen last night!!!
04/08/2008Funny Murphy story
04/07/2008Thank you to all the runners/walkers!
04/06/2008The Harlie Fundraiser was a SUCCESS!
04/03/2008Ukrop's 10k info & other stuff
04/02/2008We have a date for the Nissen
04/01/2008Quiet few days.
03/29/2008More walking and another ear infection!
03/26/2008Equipment Update
03/24/2008More walking!
03/20/200812 week ultrasound
03/19/2008Offsite PT session
03/18/2008Say it isn't so!
03/17/2008Our first night away...
03/15/2008CT Scan trip
03/13/2008Excuse my ranting please.
03/10/2008All's well...
03/07/2008The flu
03/06/2008Nissen Details
03/02/2008Exciting Stuff...
02/28/2008A day without reflux???
02/27/2008Still at home!
02/26/2008Harlie is sick again.
02/25/2008Back from PA
02/23/2008Road Trip!
02/20/2008Harlie Walking Video
02/19/2008GI Appointment
02/17/2008Some dates...
02/13/2008Congenital Heart Defect Awareness Week
02/11/2008Harlie has a walker. And she's off...
02/07/2008Gastric Emptying Results
02/06/2008Fundraiser for Harlie
02/04/2008Gastric Emptying Study and other stuff...
01/31/2008More signs!
01/27/2008Video Clips!
01/24/2008Misc. stuff...
01/22/2008And She Crawls....
01/20/2008Deep thoughts...
01/18/2008Friday Hospital Update
01/17/20089am Hospital Update
01/16/2008Hospital Updates
01/15/2008Harlie's in the hospital
01/14/2008More fevers, less reflux
01/13/2008Reflux, reflux and more reflux
01/09/2008Getting brave
01/07/2008Quick one
01/04/2008More signs to learn!
01/01/2008Hapy New Year!
12/30/2007More weight gain!
12/25/2007Merry Christmas!
12/23/2007Harlie is worse. :(
12/20/2007Saw Santa today!
12/19/2007Quick Update
12/15/2007Now Harlie is sick :(
12/12/2007Quick one
12/11/2007Jaw Reconstruction surgery
12/10/2007The thrills of tube feeding..
12/06/2007Christmas Tree
12/04/2007Drum roll please....
12/03/2007We're officially on bolus feeds!
12/02/2007Funny stuff...
11/26/2007Happy Thanksgiving...
11/19/2007Speech therapy review
11/18/2007Quick one
11/15/2007Ortho appt.
11/14/2007Ortho appt tomorrow
11/13/2007Harlie's got a cold
11/11/2007Feeding transition...
11/08/2007Quick one...
11/07/2007Eye Appointment
11/05/2007New Feeding Schedule
11/02/2007One year ago today...
11/01/2007Weight gain!
10/31/2007Happy Halloween!
10/28/2007Halloween Carnival
10/23/2007Year-End Stats
10/19/2007Patient/Family Advisory Council
10/17/2007Not much...
10/16/2007Pumpkin Patch
10/15/2007Feeding Tube Issues
10/13/2007Pampered Chef Fundraiser
10/11/2007Good-bye helmet!
10/09/2007Nutritionist appointment
10/08/2007Short one
10/07/2007Busy week ahead
10/06/2007We're Home!
10/05/2007Still at the hospital
10/04/2007Surgery Update
10/02/2007Here we go again...
09/30/2007Went to the zoo
09/27/2007One year checkup
09/25/2007Happy Birthday Harlie
09/24/2007No Surgery Today
09/23/2007Harlie's Birthday Party
09/21/2007Birthday Party coming up...
09/19/2007Still on room air!
09/16/2007Next surgery quickly approaching...
09/12/2007NO OXYGEN TODAY!
09/10/2007Harlie's First Photo Shoot
09/09/2007Are you ready for some football?!
09/07/2007Quick Update
09/04/2007Sitting up!
08/30/20075 Year Anniversary
08/29/2007Still home!
08/28/2007WE ARE HOME!
08/27/2007Things...
08/25/200711 Months Old Today
08/23/2007Back in the ER
08/22/2007Day 8 - Home Sweet Home!
08/21/2007Day 7 - UPDATED
08/20/2007Day 6
08/19/2007Day 5
08/18/2007Post-Op Day 4
08/17/2007Post-Op Day 3
08/16/2007Post-Op Day 2
08/15/2007Post Op Day 1 - Updated at 10pm
08/14/2007Surgical Update - 3PM
08/13/2007Tomorrow is the BIG day!
08/12/2007One more day...
08/07/2007One week to go!
08/06/2007Another ear infection.
08/05/2007Quick Update
07/31/2007Two weeks and counting...
07/30/2007Quick one.
07/26/200710 Months Old - yesterday.
07/25/2007Wanda B.
07/22/2007We have a surgery date!!!!
07/18/2007Surgery Consult Info.
07/17/2007Off to DC...
07/16/2007Sick and sick.
07/12/2007Good weight gain!
07/11/2007Nutritionist
07/10/2007Teeth
07/09/2007Another exciting decan!
07/05/2007Mr. Walt
07/03/2007More lung issues
06/28/2007Cardiology appointment.
06/27/2007Stuff...
06/26/2007Lung News and Hannah
06/24/2007Ortho appointment.
06/21/2007ENT news
06/20/2007Quick update.
06/18/2007Frustrating day.
06/17/2007Helmet appointment.
06/14/2007Home again.
06/13/2007Heart Cath Results
06/12/2007Busy day coming up.
06/11/2007More stuff..
06/10/2007Say it isn't so!
06/09/2007Another trip to the ER...
06/06/2007Quick trip to the ER
06/05/2007Accidental Decan.
06/04/2007Good things.
06/03/2007C-Diff and rambling...
05/30/2007A day out.
05/29/2007Weight gain issues
05/28/2007Harlie moved!
05/24/2007Cardiologist appointment
05/22/2007So many docs, so little time.
05/21/2007Settling In
05/19/2007Well.....
05/18/2007Possible discharge!
05/17/2007Chest tube is OUT!
05/15/2007Transferred to PCU
05/13/2007Happy Mother's Day
05/12/2007Possible Discharge?!?!?
05/11/2007Pampered Chef Fundraiser #2
05/10/2007Teen golfer with single ventricle heart
05/08/2007Update
05/06/2007Nothing New
05/03/2007She found her feet!
05/02/2007Chest Mass Anniversary
04/30/2007More chyle
04/28/2007Today is Tom's Birthday
04/26/2007Hoping for no more chyle!
04/25/20077 Months Old
04/23/2007Update
04/18/2007More Chyle :(
04/17/2007Two steps forward, one step back
04/15/2007No more O2!!!
04/12/2007Infection
04/10/2007Just another update...
04/08/2007Easter Excitement
04/05/2007Chylothorax lesson
04/04/2007Drained the fluid!
04/03/2007Tuesday in the PICU
04/01/2007Sunday night
03/29/2007In the PICU now
03/28/2007Hospital
03/27/2007Crazy day
03/26/20076 months old
03/22/2007Cardiology appt.
03/21/2007Mended Little Hearts Meeting
03/19/2007Home Sweet Home
03/16/2007We're Home!
03/15/2007One more night...hopefully
03/14/2007Still waiting...
03/13/2007Change of Plans
03/12/2007Monday
03/11/2007Sunday
03/09/2007Post-Op +3
03/08/20072nd Day Post-Op
03/07/20071st Day Post-Op
03/06/2007Surgery Day
03/04/2007Sunday Night
03/02/2007Quick one
03/01/2007thank you
02/26/2007Blood Drive
02/22/2007Cranial Mold
02/21/2007We're home!
02/20/2007Still here...
02/18/2007Heart Cath
02/15/2007Gaining weight again
02/13/2007CT Scan Results
02/12/2007Another trip to Norfolk
02/09/2007Congenital Heart Defect Awareness Week
02/08/2007Low weight gain
02/07/2007Eye Update
02/04/2007Feeling better
02/01/2007Getting bigger
01/29/2007Another busy week
01/26/2007Dad's Entry
01/24/2007Feeding update
01/21/2007Cardiology appt.
01/18/2007Feeding update
01/15/2007Barium swallow study
01/14/2007Quick one on Sunday night
01/12/200715 weeks
01/10/2007Occupational Therapy
01/09/2007Plastic Surgery Consult
01/08/2007Road Trip
01/05/2007Getting better
01/03/2007St. Mary's visit
01/01/2007Happy New Year
12/26/20063 months old
12/21/2006Merry Christmas
12/18/2006Cardiology appt.
12/14/2006She's catching up.
12/13/2006First PT appt.
12/11/2006Eye Update
12/10/2006THE HARLIE FUND
12/05/2006Feeding Clinic
12/04/2006I'm back...
11/28/2006Pulmonary appt.
11/26/20062 Months Old
11/21/2006Appointments in progress
11/19/2006Photos are up
11/18/2006Pampered Chef Fundraiser
11/16/2006Dr. appts.
11/15/2006Stuff
11/13/20067 weeks today
11/10/2006Friday
11/09/2006Eye Appt.
11/07/2006Settling in
11/06/2006From the Social Worker
11/05/2006Lazy Sunday
11/04/2006Late Halloween Entry
11/03/2006Harlie's Home!
10/31/2006Welcome to Holland
10/30/2006Home Stretch
10/27/2006Friday
10/26/2006Short one
10/25/2006One month old!
10/23/2006My first trach change
10/22/2006Aunt Mimi (Mandy) met Harlie today!!!
10/19/2006Now What?
10/18/2006Change of Plans - Maybe?
10/17/2006We can hold her!
10/16/2006Back On-Line
10/12/20062nd Post-Op
10/11/2006The Day of Days
10/10/2006Just waiting...
10/08/2006She's awake!
10/07/2006Saturday at the Hospital
10/06/2006Grandma'a Days with Harlie
10/05/2006Day 10
10/04/2006We're Home
10/03/2006Nice and Calm day
10/02/2006Monday
10/01/2006Sunday
09/30/20061st day post-op
09/29/2006Day 4 - First Heart Surgery
09/28/2006Day 3
09/27/2006Day 2 - Baby News
 Harlie is now a WALKER!!

Well, I can officially say that Harlie is walking. Every day she walks more and more. Another huge milestone achieved. And right before her 2nd birthday! I can't tell you how thrilled we are. And what a difference a little confidence has done for her! She is playing like a typical toddler and it is wonderful to watch! We don't even bring the walker in the house anymore. Although I still use it for distances, as she can only do short ones now. But, I know that will change quickly!

Here is a video (shocker) of her walking at the mall this past weekend. Another thing she's learned is how to give a kiss (something the jaw surgery has helped). I know it is hard to hear (the water fountain is right behind me so the camera picked up the sound), but Tom asked her to give him a kiss. She is just the sweetest thing ever!

see blog for video: http://lifesinceharlie.blogspot.com

Oh, and the other day she wanted her sunglasses, but they were just out of her reach. So, she made up her own sign! I couldn't believe it. She pointed at the sunglasses and then tapped her fingers to her temples. That's not the sign, but it is close enough and it really doesn't matter as long as I know what she's saying anyway. And I clearly understood her. She just amazes me!

Today we had feeding therapy with Beth. Harlie did great! Beth said that she swallowed a couple of times. But most important is how she's letting us do more and more and how she's biting down on her chew "toys" and moving her tongue all around. So, now I can see that what felt like not making progress, is actually, well... making progress. What a difference that makes to my spirit and my new enthusiasm for working with her feeding!

I can't believe how great everything is going. Oh! And she has been wearing her PMV (speaking valve) a lot the last few days. In fact, she wore it practically the whole time during her feeding session today (1 hour). And there is a little plastic hook that wraps around the trach so if she takes off the PMV it hangs there instead of falling on the floor. So, I put that on and for a couple of hours she kept on putting it on herself and clapping. Clearly, we're big clappers in this house - you know, all that positive reinforcement stuff. Anyway, I was trying to get her to make sounds (other than the sound you've heard before) and she actually said "mama!" Now, she wasn't looking at me, or calling me and I don't think she realized that she even said it. But, the fact that she did is all that matters. And I'm not exaggerating or making that up. My Mom and Dad were there and they heard her, too.

Beth said that she will start to learn the same way a baby learns they can make sound. So, it will be a learning process, but one that we are REALLY looking forward to. And I think I can relax a little. I think she's made it perfectly clear that she will accomplish her goals when she's good and ready and somehow it seems to all work out. And that she can do that in one instant. Meaning that one day she wouldn't walk if her life depended on it, and the next day, she took off.

I will have to get Tom to take a new photo of my belly. It is very big and I think I can officially say that I am ready to have this baby! Well, that's it for now.

Take care,
Christy

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