Pictures Speak

My sister asked me to send her 6 of my favorite recent pictures of us...I figured it wouldn't be too hard, we had tons...wrong!  As I searched through my jump drive full of pictures and my facebook page, I realized a few things...#1 - I take too my photos with my phone (which aren't the best quality) #2 - my kids are so darn cute (sorry Mommy horn tooting) #3 - Life is flying by!

SG turned one month on the 25th, which also signified a month since we've seen Ellie and Richard.

 

Its amazing how much can change in just one month!  SG is starting to stay awake for longer periods of time, she likes to look at you now - studying every feature on your face, she "smiles", will roll over from her belly to her back and is drinking from a bottle.  She also likes to tease Mommy with sleeping all night one night, waking up once the next night and then two times the next (she must know my need for schedule and enjoys messing with it!)  She still has no hiney needs to wear newborn sized pants :)

 

Noah is finally settling into some type of routine.  He has hit a growth spurt and actually owns high-water pants!! 

 

He will eat a ton if its available!  And he loves to pull his socks up to his knees....which looks great with shorts!  He still melts down from time to time, but he's always been like that.  He is okay with Ellie's hair, since he sees that she isn't scared and having a good time.  He has told me he's afraid her hair will never come back. 

 

Then there's Richard and Ellie...

 

What in their world hasn't changed?  They live in another state right now, Richard isn't working, the only way we see each other is through an iPad, neither have other friends to play with, and they see more doctors in a week then most of us see in a year.  Oh yeah, and she has no hair...but honestly that seems to be the change that has had the least effect, and the one we were the most anxious about. 

 

Oh yeah...me...

 

Biggest change in a month besides losing a bunch of weight (thanks SG)...I'm a mommy of 3, but I only take care of two.  Talk about Mommy insecurities...try not being able to help, feed, dress, discipline, hug or kiss one of your children - especially when they are sick.  At times I feel so left out of Ellie's life, her world is changing and I'm no part of it besides the face on the screen.  But that's so selfish of me, she has her Daddy there and he's doing a great job.  Last week when I blogged, I was searching for scripture related to prayer, and I posted from James.  Then while reading "Grace" by Max Lucado, this week, there was James 5:16 staring me in the face (amazing how that verse just "showed up" again!) 

 "Therefore confess your sins to each other so that you may be healed.  The prayer of a righteous person is powerful and effective." 

So I made a conscious effort to work on confessing my sins to Richard, if anything maybe it would help us feel a little bit closer when there are seven hundred and eighty three miles between us (okay so I typed the number out for the drama of it!).  Richard and I have never been very good phone talkers, he's not the most talkative man in the world, and I hear "tones and attitudes" in everything he says, even if its not there.  So this over a month long time away from each other has been hard, to say the least.  Taking the time to type out a sin, being able to read it and see it on the screen, makes you quickly see the wrong in it.  It has helped me to let go of a few things and opens up the door to ask Richard to pray for certain things for me.  I miss praying with him at night...as much as I used to have such issue with praying in front of him...I can't wait till we get to kneel together again (10 more days!!)

So back to the pictures...I found this one while searching and I couldn't help but smile.

This is Richard and Ellie when she was a few days old.  These two have had a special bond since the beginning, and I see why now.  As much as I get jealous at times of their relationship (sounds bad, but its true) I'm glad they have it.  I worry how she will react to me when I'm there with her, worried she will always want her Daddy (mommy insecurities coming again)...but I just keep praying it will all work out!

Here's the latest on Ellie from Richard...

On Wed we found out our inpatient stay was moved to Thursday instead. We had OT, PT, and clinic appointments earlier on Thursday. At our clinic appointment Ellie had another 'zone out' moment, which in one way was good because there were several doctors who witnessed what I had been seeing. Because of that the doctor increased her anti-seizure dose. She had one more moment when we were at dinner that night but I have not seen anymore since we have been inpatient.

Ellie has been a little more sick through this stay than the last. They are keeping her on Benadryl along with the Zofran to try to settle her nausea. So far today (Saturday), we have done good. Since she's on the extra Benadryl she has to stay in the bed, we've watched quite a few movies today and played with some toys in the bed.

We had a group of visitors came by earlier today from Virginia Tech (about 10 or so). They are a part of a sorority that was taking a tour through St. Jude. Most of them knew about us through the "Turn Tech Pink"  event at Virginia Tech last month. They brought some gifts for Ellie and a framed picture from the Turn Tech Pink event (sent by Charli Zirk, Carly's cousin who goes to Tech and created the event).

Ellie is continuing her quiet rebellion, refusing to talk when the nurses or doctors are in the room. It's somewhat funny to watch.

We will be getting out tomorrow morning (Sunday) and will be with an IV just like last time. She will also be getting the G-CSF shot to help regain her counts. We anticipate on being neutropenic and in need of another blood transfusion in about a week or so.

Can't remember if I included this before, Ellie's next scans are scheduled for May 8th.

Love.Always.

-Rich & Ellie

 

Wondering what my 6 favorite pictures were....oh I'm sure you are!

 

 

"Her children arise and call her blessed;
    her husband also, and he praises her" Proverbs 31:28

 

Prayers, Praise and Pink

~Carly