Esophagus Dilatation #9

Swinging with daddy!

Lucy has esophagus dilatation #9 today.  Jason and I can't believe that she has been in to have 9 of these procedures already.  This time went well; we heard pretty much the same story - her esophagus has grown together some, but not to the extent that it was growing back together in the beginning.  She was able to handle food very well all the way up until her dilatation so we definitely feel like we are making progress - it is just so much slower than we had hoped initially. 

She did great today, as always.  The nurses love her (and they are all getting to know her well!) She took a nice long nap when we got home, drank 7 ounces of chocolate milk when she woke up (4 ounces in a DAY is a lot for her to drink typically!), and enjoyed a laid-back evening walk and trip to the park.

As we have mentioned before, she loves, loves, loves being outside and we use it as a calming mechanism often if she is cranky before nap, meal or bed time - I'm not sure what we are going to do when it is 0 degrees outside! 

We enrolled her in a local early childhood education class through our schools district called 1, 2 Buckle My Shoe.  So, on Thursday nights, we hang out with 8 - 12 other 1 and 2 year olds (and their parents).  Since Lucy is home with us or the nanny pretty much all of the time, we feel like it's good for her to meet other kids and adults and so far she seems to like it.  At this age, kids don't really play together too much, but more next to each other and it's pretty cute to watch their little social skills growing and developing.  As a parent, it's hard NOT to compare your child to others in their age group to see if they are on track.  We often get comments about how little she is for her age (she seems huge to me - 21 lbs at the doctor today!!), but I think she is tracking pretty well with her age group from a development perspective.  I can definitely say without a doubt that she is the best jumper in the group and gets some serious air on the child-sized trampoline! :)  Her new Special Education teacher has a daughter a month older than Lucy and they come to class also, so it's a great opportunity for her teacher to see Lucy in a "real" environment.

Playing with some vintage "Little People" - they used to be much smaller than they are now.

Well, I didn't intend to write a long blog when I started this, but it has turned into a rather long entry, so I will sign off for now.  Always remembering Romans 12:12 that we will be "...Be joyful in hope, patient in affliction, faithful in prayer."

More Lucy/Mommy time...Lucy's perspective

Spending Saturday morning in my PJs...with my dollies

Jason is in Budapest for a week and a half, so Lucy and I get to spend lots of quality time together.  Lucy always sends daddy an email with a picture at the end of the day so he knows what a good girl she is being while he is away.  Here are some excerpts (written from Lucy's perspective):

Loving my cousin, Preston!!

Running around outside...I LOVE being outside and cry when we have to go back in the house.

Smiling at mommy after I made a mess in my room (I personally love the duck and teddy bear hanging out of the crib!!)

Not being such a good girl...seeing if my pacifier would float. :(

Proof that I DO slow down every once in a while...mommy tells me that she needs some down time!

Forward Progress

This week has marked two very exciting milestones for Lucy's eating development and we couldn't be more proud of her!!

First off, we have ended overnight feedings!  Since she was born, basically, Lucy has been receiving formula or PediaSure via her feeding pump for several hours overnight.  We put her to bed with a connector tube attached to her button and then after she fell asleep, we would attach her pump on a very slow drip setting.  We started at about 12 ounces over 6 hours and have gradually been working down to 10 ounces, then 8 and most recently 6 ounces over 4 hours.

She is now at the point that she consistently only needs about 4 ounces of PediaSure to make up for her daily calorie allotment.  So, we are still feeding her after she goes to bed, but now we are giving it to her from 10 - 11 pm and then taking out her connector tube and going to bed ourselves!  For us, this means no more waking up to a beeping feeding pump at 4:30 in the morning and stumbling to Lucy's room, hoping that she doesn't wake up before we can turn it off!  For Lucy, this is one step closer to a "normal" eating pattern!!

Second, tonight Lucy ate exactly the same food as us for dinner.  She is still eating pretty much strictly pureed foods and foods that dissolve quickly but tonight we had Chicken Wild Rice Soup which we pureed for her and a cracker - she was happy as a clam to eat what we were eating and it was such a treat for us to not have to do any special food preparations for her.

Ready for bed - squeaky clean after bath time and sporting some fancy pajama pants

Thank You for your continued interest, support and prayers!  We are excited to be able to share her improvements with you and definitely feel like we are moving in the right direction.

Esophagus Dilatation #8

Posing in a dress that my mom saved from when I was little!

This week marked Lucy's eighth esophagus dilatation and a year since her original surgery to connect her esophagus to her stomach.  Remembering those first months when she had to have a suction tube just to manage her own saliva, wow has she come a long way!!  September of last year was REALLY rough for Lucy - she had a chest tube in for most of the month and was on a ventilator for several weeks of it as well.  What a difference a year makes!  Jason and I were just laughing at her toddling around the house, bare naked after her bath, holding onto a Big Bird book and without a care in the world.

Caught in a rare moment of downtime - loving on her Pillow Pet

The last dilatation went well.  The doctors were able to start at a size 8, which is where they ended up last time, and they progressed to a 10, through all three stages of it (each balloon has 3 different settings).  There was very little growing together like we had seen the past two times and it was an overall very encouraging procedure.  Also, she has been eating great since the procedure - almost 300 calories by mouth yesterday!  That is over 1/3 of her daily allotment!!  Have I told you recently what a trooper she is?

Here are some pics of Lucy's current favorite game - hide things under the footstool!

Just when we think the toys are all picked up...

...we move the footstool and find Lucy's treasure stash!

A great end to the summer!!

 As with everyone else in Minnesota, we tried to pack in as much fun as possible over the Labor Day weekend as it signifies the unofficial end of summer up here!  We spent Saturday at the Minnesota State Fair.  It was a sort of impromptu trip for us...we had talked about going to the fair but weren't sure how Lucy would like it - plus it's been so HOT here and Saturday was no exception.  However, true to her sweet personality, as is typical of Lucy, she did great!

She spent most of the time in her stroller and got to sample the chocolate malts from the dairy building and try strawberry milk and see loads of animals.  She especially loved the dogs that she got to pet and many of the owners commented on how gentle she was while petting them. She spent most of the time in her stroller, but did need to be carried for a bit - thank goodness Grandma and Grandpa were with so that we could alternate carrying her.  She was feeling like every one of her 20 pounds in the hot, sticky weather!!

Looking at a cow

NOT enjoying her pig ear hat, with Grandpa!

Just couldn't keep her eyes open to take in any more fair sites.

On Sunday, we took a quick overnight trip down to Wabasha and spent the night at a friend's house on the Mississippi.  Lucy loved, loved exploring their yard and big, open house - she toddled around all over and explored every corner she could get to.  She was definitely ready for a nap every day!!

Had to take this picture - it was a display  at the State Fair based on a Dr. Seuss ABC book that we have..it's a Zizzer Zazzer Zuzz, as you can plainly see!

Her appetite and eating have been great over the past few weeks and we will go in for her next esophagus dilatation on Wednesday of this week.  We are very eager to see the size of her esophagus this time and are definitely hoping for better news than the last two procedures.  We appreciate your prayers and will let you all know how it goes for Lucy this week.