Thursday, February 24, 2011

Is this the same baby?

Aurelia turned 6 months old yesterday and I turned 29.  Yep, my birthday is Lady Hawk's half birthday.  For my birthday gift, Aurelia only woke up once in the night (best gift ever!).  I feel like a new woman today.  I think I had forgotten what 5 hours of sleep felt like.  And I cannot believe how fast our little love bug is growing up!  It's so hard to think back to that fragile little baby with a very large head in the NICU.  Now she is so full of life and joy!  When I look at old pictures, I can't help but question whether the baby I'm holding is the same baby I'm looking at.  A lot can change in 6 months.  

I can't wait to watch her change and develop more over the next months and years.

Thursday, February 17, 2011

Doing their job

Aurelia's blood reinfusion went as smoothly as can be expected.  It was a very long day at the hospital.  It's never fun watching your child get poked and prodded.  It only took four tries to place the IV this time around, and they didn't have to shave her head like last time.  Our little lady continues to impress her doctors with her strength.  They had to give her a little benadryl to sedate her since it was taking the whole medical team (plus mom) to hold her down.  But all the pain and discomfort of the day is well worth it because we think those stem cells are doing their job.  In the past week, Aurelia has started looking me in the eyes and smiling!  She's always smiled, but she hasn't been able to make eye contact.  Now she responds and laughs when I make silly faces.  She watches people walk around the room.  She's even started to try and reach to grab things.  It's an amazing feeling.  There are still a lot of times when she can't see, and she'll voice her frustration when her vision first leaves.  It's my hope that with some training, a few more stem cells (in August) and a lot of prayer, her vision will become consistent.

Smiling, happy baby!

Wednesday, February 2, 2011

Catching Up

No, we haven't dropped off the face of the planet.  We have been extremely busy, which does not allow for blogging.  However, there is a lot to catch up on from November.  There's too much to catch up on in one post.  When Dad and Mary got married, one of the questions Mary would ask us at the end of the day was "FSGBB?"  We'd tell her something FUNNY, SAD, GOOD, BAD, and BEAUTIFUL.  I think this was her way of getting around the one word teenage answer to "How was your day?"  I still use FSGBB when life feels like a whirlwind (i.e. the last few months).  

FUNNY- While preparing to write this post, I googled "FSGBB" to see if anyone else uses it.  The answer is no.  However, google did find an Urban Dictionary definition for "fsgbb."  Apparently, someone somewhere has decided that "fsgbb" stands for "Fuzzy Sex God in Big Boots" with tag lines including Captain Morgan and Beer Pong.  Kids these days, so strange.

SAD- Aurelia was diagnosed with Cortical Visual Impairment (formerly known as Cortical Blindness) at her Opthamology appointment.  In the most basic terms, CVI is a problem with the neurological processing of vision.  Her eyes and nerves work fine, but she cannot process the images she is viewing.  Certain things are more difficult for her to process, such as faces.  At this point we do not know what her CVI will look like longterm.  It's another one of those diagnoses that has a vast range of possibility.  Read more about CVI here.  The hardest part of the CVI diagnosis is the confirmation that there was brain damage.  

GOOD- We leave for Duke tomorrow.  Round 2 of Aurelia's blood re-infusion is Tuesday.  These trips to Duke give us such hope.  We're praying that the stem cells in the cord blood will help repair the parts of her brain that have been damaged.  And there's also the added bonus that we get to see Joey's parents.

BAD- My extended family has been through a lot in the last few years.  Currently, my mom's side of the family is going through a very hard, very tragic time.  We experienced an unexpected loss and are dealing with the aftermath of the traumatic circumstances.

BEAUTIFUL- It's always nice to end on something beautiful.

Isn't she just the cutest thing ever?  She is such a joy!  We are so blessed to be her parents.