I don’t know where to start, what to say – or what to do for that matter! Well, let me start with this – Penelope is a champion of the world! I can’t imagine going through what she has and then still smiling when her Daddy comes to ‘get her’ with fingers outstretched. That hasn’t happened since we were first admitted, but it happened yesterday – which made my day for sure. She’s back on the Cpap – her lung just won’t open up well without it right now. I’m ok with that, but really want to get off of the ICU. Although I do understand and appreciate that on the ICU she gets 1 to 1 nursing – off of the ICU there’s more opportunity for comfort, visitors and relaxation. Considering that she’s a stage 4 cancer patient with no immediate relief in sight, having a few visitors really does make a difference.
Yesterday she started talking again. She was saying ‘hello’ while holding the thermometer to her ear like it was a phone. She was waving at the nurses and respiratory therapists as they came and went and we all had a good bit of fun.
We’ve really been worried (and still are) about her leg function. She hadn’t moved her legs at all since the biopsy and would only wiggle her toes if you tickle her foot. But, yesterday I was playing with my smiley girl and I grabbed her foot with my mouth (might sound weird, but it’s normal at our house) and she pulled her leg away!!! Then I did it to the other side and she did it again! Then I did it again, and again…
That was the best thing that’s happened to me besides the day she was born. I just want her to be better. It kills me that she has to go through this. Mom and I are trying to keep it together, but it is SO hard! She doesn’t know what’s going on, why we’re in the hospital, why she has an incision on her stomach – and back, and side of her chest and tubes semi-permanently installed in her upper torso…why there’s 15 people poking her with broken Q-tips or a team that comes in every four hours and shoots saline up her nose and suctions it out of the other side. Thank God she won’t remember.
If there’s one thing that I can relay to everyone – NEVER TAKE YOUR CHILD BEING HEALTHY FOR GRANTED. That is the one thing that I admit I did that I can assure you I’ll never do again. I just want my baby to be home. Happy. Smiley. Grumpy. Who cares! Just home! I’m sure she wants it as much as Carina and I do.
Last note – Carina is an absolutely amazing Mom. If you’re going to have a kid, you should talk to her. She has being a Mom down to a science and it’s her first child! Literally, if you looked up Motherdom (if it’s not a word, it is now) Carina’s picture should be there. She thinks about things that would never cross my mind – handles situation with either a fiery fist or a comforting tone. When it comes to our child she just has it dialed. I have no idea what I would do without her. Penelope and I are both extremely lucky to have someone so loving and dedicated. This is rough stuff, but Mom’s got it dialed. Champion.
Best
Aaron
{ 12 comments… read them below or add one }
Aaron & Carina, That’s the best news I could have heard today! I am soooooo HAPPY my baby toes and legs are working! I just love baby toes(my favorite baby part)! O.K. I love ALL of this baby! Oh, you guys too!
I am praying for your little one and for your family as well.
I have just purchased a shirt and will be spreading the word about Penny’s condition.
God Bless.
tear… coming from Daddy, that probably made every Mom that reads this post day. and Carinas, Because she is JUST as lucky to have you. Mommas are strong but Daddys, well you guys are the rock of the family. Mandy and I spreading the word about Penelope ‘like the wind comes sweepin through the plains’ here in Oklahoma. Please know that there are so many lives and hearts that your sweet little Penelope has touched. Thinking of you guys…
the berrymans
Hey Guys! Such good news about her moving her legs today!! Please give that sweet baby kisses for me! I am beyond amazed by you guys! Such a strong family of 3! I just wish I lived closer so I could come and help in someother way. I feel like I need to be there helping out! Lots of love from Oklahoma!!
FB.init(“be84e65f9fbb20289a29e6a7e388a610″);Penelope's Page! Support Childhood Cancer Awareness! on Facebook
YEEPEE On the Legs and ~~toes in mouth did it!
God has a plan! We are praying for you all!
Linda
SHE MOVED HER LEGS!!! I jumped up and down, twirled the girls around, cried a little… soooo happy for your little miracle.
BTW, love that you eat her feet. We eat little tootsies here daily too. Several times a day. Must run in the family.
)
Dear Penny, Carina and Aaron,
Best news in the world!!! Good job Penny! We are all praying that you r making progress, but it does take even little bodies some time to battle all that she is going through. Keep it up Penny! We are just happy for those baby steps forward!! You are amazing . God Bless the Buttress family of 3.
I just heard about your about your little angel. *from Katie Harris* I have a 2yr old little girl and would have no idea how I would cope with what your family is going through! I wish Penelope the best and will spread the word about her. Stars in the eyes, rosy cheeks and a happy girl in the morning!
That is so awsome!!! I knew my little niece was a fighter!!! Love you guys!!! XOXOXOXO
I am praying for Penny and your family!
So happy for you and for her that she moved her legs. Wish there was something I could do from Oklahoma to help you out. We are praying for all of you every day.
Love,
Shelley