Friday, January 31, 2014

December & January Sisters!

Some random sister pictures over the last couple of months!
Laundry basket rides!
Love you, sister!
Hanging out and playing
Lillian outgrew her infant/toddler bathtub, so we moved her to the big bath in a laundry basket.  Evelyn wanted to be in it, too!
These are a few of my favorite things!
Hanging out on the couch!
 Saturday morning fun!
Evelyn thought Lillian needed to wear the Purdue hat
Just working on some puzzles
Sisters in their matching jammies
Lillian's first wagon ride
(not the greatest was dark and I was using my phone...)

(not the greatest was dark and I was using my phone...)

January Random Pictures

January's random pictures and videos!
First time in a swing!
Enjoying the South Texas "winter" weather by playing outside
Who doesn't love a naked baby picture?
 I was finally getting through our Christmas cards and Dan was showing Evelyn her cousin Micah, telling her that we would be staying at his house in a couple of weeks...
Happy girl!
Having some lunch!
Evelyn loves back packs - so when Dan got a new one, she insisted he wear his while she wore hers
Everyone sings their ABCs while sitting on the potty naked, right?
Daddy built a fort with the furniture and blankets - Evelyn loved it!
One day at school, they made "snow globes".  Evelyn's teachers asked each kid what they would do if they lived in a snow globe.  Most of the kids said things like "be Superman" or "sing" - Evelyn say, "catch the snow".  Smart kid!
(to be fair, she's probably the only kid in her class that has actually SEEN snow!)
Just practicing my mad sitting up skills!
Enjoying a Saturday morning at the park!

Lillian says, "Go Broncos!!"
My Mom and Dad were at the AFC Championship game (they are season ticket holders) and it was my Dad's birthday.  This is a terrible picture, but there was a crowd shot where you can see my Dad standing up and waving at the camera.  Happy Birthday, Dad!
Seriously, I can't get enough of this one!
Playing with some Sophie and my key ring!
Daddy got Evelyn and Lillian's new wagon put together - so we took it for a ride!
Trying out a new sub shop in town called "Firehouse Subs"
Eating some breakfast (strawberries & whipped cream on waffles!)
She told me she was Ariel their imaginations at this age!
Evelyn is going to be a flower girl in a wedding in a few weeks, so we were practicing throwing the petals on the floor (she's not a fan of the throwing, but she likes the basket!)
Lillian provided some accompaniment for the practice!
Duet time!
Don't you hate it when you get stuck behind the end table and your Mom takes a picture before helping you?
(Still not sure how she got back there!)
One of our favorite things to do this time of year is take a run to the park and let the girls play!

Sunday, January 26, 2014

Super. Bowl.

We're going to the Super Bowl!!!!!!!  I am so excited!  We'll actually be in Indiana on the actual Super Bowl date for a family wedding, but we are getting decked out here, nonetheless!
Evelyn wanted her nails painted like Mommy's

Our finished product!
Sweet little toes...
Representing with our Broncos banner in the bedroom window
(It's been REALLY windy here lately, and with us not being home, we didn't want to risk it blowing away while we are gone!)
Come on, Broncos!!!!

Friday, January 24, 2014

Starting Growth Hormone Therapy

Today marks the day we officially started Evelyn's growth hormone therapy.  The synthetic hormone she is on is called Norditropin.  We are still figuring out just how much of the cost we will be responsible for, and how much our insurance will cover, but this was the one that he doctor prescribed and we didn't have to fight to get it.  Apparently doctors often have to argue with the insurance companies to get one brand over another.  She prescribed this brand because it is supposed to be the easiest pen to use.  It comes pre-filled, and we don't have to mix any solutions to create the medication before injecting it.  The down side of that is we have to keep it refrigerated, which normally isn't a problem - we'll just have to carry it with ice packs when we travel.

The drug company has a patient care division called NordiCare that works with us, the doctor, and the insurance company to streamline the process.  I am really thankful for it and we have a really good case manager who has answered a lot of questions for me!  NordiCare sends out a nurse to your house to teach you how to use the pen and administer the medication, which was what happened this morning.  She walked through the process, then had me practice on a doll, then made me do it for real! (Ugh, I was thinking I'd get to do it for real the first time with just Dan and I!)  I felt awful, I brought Evelyn over and kept saying, "I'm so sorry, honey" - then hesitated for like 20 seconds before I could actually put the needle into her.  Having to stick my sweet girl with a needle was one of the worst feelings I've ever had as a mother!

This is what her pen looks like - we attach a new needle each night, dial up her dose, and give it to her.

We rotate to different places around her body (back of the arm, thigh, stomach - ouch!, and bottom on both sides) so that she won't build up scar tissue from the needles.  Evelyn will have this injection every day until she goes through puberty (or God heals her!).  We're doing a few things to try and make this as easy as possible on her.  It's best to give the injection in the evening because your body naturally produces growth hormone at night while you sleep.  So I have an alarm set on my phone to remind us every night at 7pm to do her injection.  We call it her "poke" because we don't want her to associate it with a shot and hate going to the doctor, nor do we want her to associate it with medicine in case she has to take an oral medication at some point.  We set up a calendar that she gets to put a sticker on each night, and she gets 2 M&Ms after her poke.  The chocolate started because after the nurse made me give Evelyn the first dose while she was there, I wanted to buy Evelyn a stable full of ponies but opted for chocolate instead!

A lot of you have asked about side effects, particularly because you have heard news stories of some pretty serious side effects with growth hormone.  The news stories are for people using GH for performance enhancement - so they are injecting GH in excess of the normal levels their body is naturally producing. When you have too much GH, that's when the negative side effects occur.  In Evelyn's case, we are simply replacing what her body is not making, so she will not suffer any side effects (other than being hungry and tired from growing!).  In order to ensure this, she will meet with her doctor for follow-up appointments every three months to track her growth velocity and be certain her dosage is appropriate.  I found a Facebook group managed by a foundation that supports research for GH disorders that has been really helpful.  It's all parents of kids with various growth diagnoses, mostly GH deficient diagnoses.  They have given me some good ideas like letting Evelyn pick the injection site and swab her skin with the alcohol pad before we do the poke.  Things like that let her feel like she's more a part of it, instead of it being done to her.  It's all pretty new and a little scary.  I don't really want it to become commonplace or normal to her because it's not!  I just want God to heal her!!!

Tuesday, January 21, 2014

Dancing Sisters

Now that Lillian is sitting up on her own, Evelyn has really started playing with her more.  Before, it was a lot of "hi sister" or "boo!" - while she was on her way to something else.  But now, she actually sits down with her and plays.
She loves making Lillian dance with her
And you can tell Lillian likes it, too!
I love the look on Lillian's face in this picture!

Saturday, January 18, 2014


We have been wanting to take Evelyn bowling for a while now, and finally have been healthy enough to do it!  She was interested and enjoying it (minus when her hand got crunched between two balls on the rack) until about the 5th frame.  Daddy had to finish out her turns from there.

Just taking it all in!
"I just want to sit, Mommy"
Their final scores (with bumpers!)
Daddy and his girls!