Esophagus Dilatation #21

Post-surgery recovery - still pretty out of it

 Thursday's endoscopy and dilatation went great!

Although the doctor was running about an hour late (Ugh - since we have to be there 1 1/2 hours before her procedure - that's a 2 1/2 hour wait before we even get her to the OR!), the day went pretty well.  They were able to dilate her esophagus to about a 15 (so around 5mm, I guess), which is the widest it has EVER been.  Prior to the procedure, we really didn't see any new eating issues so we are going to stretch them out (no pun intended) even further than our current every 3 months to 4 or 4 1/2 months - isn't that great?!?!

She did throw up a few times right before and after the procedure, but after a 3 hour nap when we got home, the anesthesia seemed to wear off to the point she was feeling good (and asking for dill pickles and chocolate chip cookies to eat!)  It's possible that she has developed a slight reaction to anesthesia now or that the stuff they use at the U is slightly different than at Children's, so I'll have to do some medical records research to see if I can find out what might be different.

I mentioned in my last blog that I was anxious about this procedure, so I was so, so happy to wake up on Friday and have Lucy be back to her normal happy (sometimes hyper!) self.  What an amazing, strong little girl...we just love her to pieces!

Recovering with a little Tea Party at home

"We don't need to see Lucy until she is...4"!?!?!?

Having breakfast with Lucy and her new doll...named "Dolly"

Just before Christmas, Lucy had a cardiologist visit at Children's where she had several tests and ultrasounds of her heart.  She did not like it - I can't blame her!  An unfortunate side effect from all of her hospital stays last fall was some serious doctor/clinic/hospital fear, so we are working through that with her.  Again - it's totally understandable how she could feel that way!

In any case, the cardiologist said that although she has a small VSD (hole in her heart), there is a very small chance (like less than 1%) that it would ever cause any issues for her.  Her veins and arteries appear to be working correctly and we don't have to go back until she is 4...wait, what?  I cannot imagine a day when Lucy is 4 years old!

I think I mentioned on here that her pediatrician was leaving Children's Hospitals and Clinics at the end of 2014?  Last week was our first visit to a new doctor for Lucy and we chose one close to home that is in the same system as the University Hospital where her GI and surgeon practice.  It was wonderful to have a 5 minute drive vs. 25 minute drive and to have free parking for the quick 20 minute visit!  So, we are hopeful that this will work out for us all.

This coming Thursday is her next dilatation.  If you feel like it's been awhile - it has!  Almost 3 months since her last one and she is still eating with very few issues!  I am VERY anxious about this because of the terrible outcomes from her last 2 procedures.  I know that the feeding tube was a huge factor in those situations, but nonetheless, it will be her first time having a "normal" dilatation with our new docs and I am already ready for it to be over!  As always, your thoughts and prayers are greatly appreciated in the days leading up to the procedure.

I'll leave you with some fun winter pictures of Lucy - so nice to have milder temperatures in MN!

Helping mom finish our snowman

Discovering how GOOD snow is to eat! :)

Happy New Year!

2014 was definitely an incredible year for Lucy.  While she had some ups and downs from a health perspective - I don't think anyone would have imagined that she would have to be hospitalized not once, but twice - there were more ups than downs.  At the end of it all, she has recovered well and has no more feeding tube - what an accomplishment!!

Cousins!

Who needs presents when you have a box?

When I reflect back to the beginning of 2014, we were just a few months removed from the feeding pump and still pretty new to bolus feedings.  Lucy was eating very little variety in her foods - mostly baby foods and small amounts of "real" food at a time.

Here are a few highlights that Lucy wants to share with you all:

 - I got to go to Virginia to visit daddy's family again - and me and mom got stuck in Atlanta overnight!!  Mom seemed stressed but I don't know why - it was fun!!
 - I started brushing my teeth all by myself
 - I got to go on an Easter Egg hunt outside...in the snow!!
 - I got my first car (it's all plastic and doesn't have an engine, but aren't most cars all plastic these days???)
 - Grandma and Grandpa got to take care of me overnight while mom and dad celebrated a night away for their anniversary
 - I got to be a flower girl and meet cousins Emily, Matthew, Shelby and Brody for the first time
 - I got to put my feet in the Atlantic Ocean
 - I turned 2 and got to go to the Minnesota Zoo with all my cousins
 - I got to go to a pumpkin patch and ride on a hay ride
 - I got my feeding tube out!!
 - I went sledding for the first time
 - I visited Bentleyville for the first time and saw a TON of cool Christmas lights
 - I had around 20 doctor's visits (that's only half of what I had last year!) but I had to spend 10 nights in the hospital this fall :(

Despite the rough fall, I think 2014 was Lucy's best year ever.  What fun it is to be a 2 year old!

Lucy at Christmas last year - she is getting so big!