Hints of Spring...

We are starting to feel like Spring will make it to Minnesota!  Yesterday, Lucy was able to play outside for over an hour without a hat or mittens on!  We had lots of neighbor kids stop over and it seems like everyone has grown over the winter!  Lucy LOVED being able to hug the neighbor's cats again and "play" ball with the big boys. :)

Chasing her shadow! (And for those of you not in Minnesota, yes we still have that much snow on the ground!)

Cousins Ollie and Remy picked out 10 matchbox cars for Lucy to take home last time we saw them at Grandma and Grandpa's house and she plays with them everyday - Jason and I have to be careful where we walk, lest we injure our feet on a runaway car!!

Lining up her cars in the windowsill

We are coming up on semi-annual appointment time so have some doctor's visits planned in the next few weeks - another dilatation in a few weeks, a urology follow-up, and an RNC (Radionuclide cystogram) - yuck! - which will check her Vesicoureteral Reflex (from the bladder to the kidneys).  She will have to have a catheter for this one, and they don't typically sedate children under 3 for these, I've been told, so I am not looking forward to that one.  I tried REALLY hard to get them to schedule this when she was already put under for her next dilatation, but was not able to - I guess the machine is broken at Children's St. Paul location (don't even get me started about how much money we pay in hospital bills and not understanding how they can have one machine in an entire hospital and it can be broken and they are unable to fix it for 3 months.  Where is our money going?!?!?!?!?)

Other than that, we have been staying healthy and are enjoying some downtime in Jason's travel schedule while we patiently wait for Old Man Winter to leave for a few months!!

Oh, and the best news of the week?  Lucy is down to two 2-ounce feeding through her feeding tube!  I am anxious to have a weight check at the doctor in a few weeks to see how well she is maintaining her growth without these supplemental calories.  Slow and steady progress, right?

Not sure how well videos work on here, but this is Lucy enjoying her favorite activity last week at her Thursday night play group - trampoline!  She gets some pretty good air!!

Playing

Smiling for the camera

Jason has been traveling a TON in the month of March, so Lucy and I have had lots of play time together.  We spend our time posing for pictures to send daddy for his nightly updates, playing kitchen, going on little errands, like to the library or to play with our friend, Blake and hanging out at Grandma and Grandpa's house.

Checking herself out at the library

Hhmmm...which book should I read first? (Doesn't she look so grown up in this picture?)

 Capturing a picture of two 1-year-olds together is tough:

Hi, Mom!  Look - I found a silver ball!

Oh hi, Blake!  When did you get here?

You need a ball - just a sec, I'll get you one.

Hey, where is Blake going?  Oh hi, mom!  Look...an orange ball!

Isn't this fun?  Are our moms STILL trying to take our picture together?!?!?!

Esophagus Dilatation #15

Lucy's "smile" face

Wow!

I cannot believe that Lucy had her 15th esophagus dilatation today!  It had been 5 1/2 weeks since our last one - stretched out from 4 weeks last time.  As you may remember, we have been stuck at a size 10 for quite a while now.  Well, not anymore!!  We were able to get to the first (of three) stages on a size 12 today. 

Lucy did great - she has a new friend that she LOVES in the form of a little Elmo doll from grandma and grandpa that she brought with her today and hugged pretty much all morning long.  I have a feeling that today was not Elmo's last trip to the hospital!

We are about one year out from her first dilatation and even when I get impatient at her seemingly slow progress, I need to remind myself where we were a year ago - Lucy was eating step 1 baby food and could only handle a few spoonfuls at a time.  I remember when she ate her first Cheerio - I was so happy for her but horrified that she might choke on it, even thought it was tiny! She is still a long ways off from "normal" eating, but is making great, great strides and we are so happy for her!

Lucy at her first dilatation - she is still the cutest patient in hospital and the nurses fight over who gets to take care of her!

The plan is to go back in 6 weeks, and see if we can continue to progress through the #12's.

What a big girl!!

Two Years Post-Diagnosis: A letter to our daughter

Lucy:

Today marks the 2-year anniversary of when we found out about your hydrocephalus diagnosis - 4 months before you were even due to come into this world!!

We know that life will not always be easy for you and that we may have to tell you that you can't do some things because you have a shunt.

But we also know that we love you SO MUCH!  As I reflect back to the days and weeks following your diagnosis, we didn't know what to expect and were so scared that you wouldn't be able to lead a full life and so sad that you had one giant strike against you before you were even born. I could have held you all night as you laid peacefully sleeping in my arms tonight, wishing that we could freeze that moment in time - my perfect, sweet little girl.

We are so happy that God chose us to be your mommy and daddy and can't imagine our lives without you.  We know that you are perfect for us and that "...every good and perfect gift is from above, coming down from the Father of the heavenly lights, who does not change like shifting shadows." (James 1:17)

You are such a strong little girl and will do great things.  Our prayer for you is the same as our prayer for ourselves - may you always remember to "Be joyful in hope, patient in affliction, faithful in prayer." (Romans 12:12)
 
All of our love,
 Mommy and Daddy

Independent!

Rockin' the vintage sweatshirt from the eighties (or seventies?) - hand me down from mama!

I fear that Lucy's baby days are officially behind us!  Little Miss Lucy is getting to be such an independent little girl!  She does a good job of saying "bye-bye" and watching from the window when Jason or I leave the house and she is home with the nanny.  She is also pretty brave when she is at her weekly Early Childhood class with her little friends and we separate to talk about parenting topics while the kiddos stay with a teacher and play.  She is less excited about church nursery and is often a teary when we pick her up, but I think that will get better when winter (and cold and flu season) passes and she is in the nursery more consistently.

She has been learning that climbing can get her things that she wants...like to the top cupboard of her play kitchen or to her pacifiers, which are resting on her dresser until sleep time!

Balancing in the rocking chair to reach her pacifiers....

Look mama!  I did it all by myself!!

We are all pretty sick of winter (I know, everyone is!) and are grateful to have had a nice lull in doctor's appointments over the past several weeks.  We were all feeling pretty lazy this afternoon, as evidenced in this picture of Lucy laying down on the living room floor - a brief rest before playing more of "Where did Elmo go?"