Friday, February 15, 2008

Home...

We are so glad to be back home! Gracie is feeling great and we got a pretty decent night of sleep last night. FINALLY.

So I have to note here that my Gracie is officially a great traveler! She really loved flying! When we would take off, she would smile and her eyes would get so big. It was the cutest thing.

So since Uncle Mack keept you all updated about what we were up to in Minnesota, and Aunt Hyster did the clinical teaching of what we're facing with this disease and transplant situation, I am hoping to have a few opportunities over the next few day to sum up how we're feeling. Maybe the more emotional side of this journey we've begun. Since thats the part I'm most familiar with, the part I really know, I guess thats where I will start for now.

I hope I can keep the blog good and alive though... Gracie is definately demanding of most of my attention, but I will do what I can to keep this great blogging momentum going. :)

I'll begin with today. Now that we're home, I'm torn between feeling happy to be back with our family and friends, to anxious because we are still having to deal with and treat this disease away from our trusted and specialized doctors. That is a bit on the scary side. I'm still learning to properly care for Gracie's central line, and we're having to give her some antibiotic drops for her ear tubes as well. Things seemed a bit easier when we were in the frozen north, knowing that the hospital was right across the street full of doctors who know all about Gracie's condition and the particular weaknesses she has. That makes me that much more committed to keeping her line sterile and keeping her generally healthy over the next 2 months... so we can stay away from any other hospitals if at all possible. Fingers crossed.

Gracie is definately glad to be back home. She really missed her jumpy chair while we were gone and she's gotten in it at least 3 times in the 12 hours that we have been back. :) :) Its good to see her in there and happy... it seems normal. Like life before we started all of this.

We have lots of pictures to post from our trip and I hope to get them on here soon. Stay tuned.

And let me say again from the bottom of my heart: Thank you all so much for your love and support. Our families, old friends, church family, my BBB girls, the MPS families, even people we don't know... everyone who has come here and supported us and Gracie through this hard time have a very special place in our hearts. We are so blessed to have you all in our lives. Thank you, thank you, thank you.

8 comments:

mom said...

We're so glad you're home.
We missed you so much.
xoxo

Mr. Noodles Panini said...

I'm not glad you are home. You either have to move to Minnesota or Chicago to be closer to your uncle Mackie.

How can we get the jumpy chair up their next time?

Gracie's Mom said...

I think we can check with Ronald McDonald and see if he might have one at his house already... otherwise we can buy another one and then leave it for the other babies at when we come home. :)

I miss you Mackie... and Gracie does too. :(

*Adriann* said...

Girl, I love you. I know we have never met in real life but you have touched a spot in me that is forever touched. We were pregnant together and you texted me shortly after birth. I feel like I know you ya know? Gracie is fortunate that God gave you her as a mom...and you are fortunate that your brother is the man he is. I am deeply moved by the lengths to which he has gone throughout this process.

As for gratitude...just keep it. Because I know that if it was me in this situation, you would be there as I have and will be for you. So for now, concentrate on that gorgeous girl and know that not a day goes by that I don't ask a higher power for a big favor.

Gracie's Mom said...

Adriann- you know I love you dearly, friend. You're so awesome.

testdriver said...

It was great to see you in Philly, too! Come back when you can stay longer :-)

xoxoxo

Aunt Hys

Auntie Chris said...

I'm glad to hear your trip home was a good one...it must be great for everyone to sleep in their own bed! It sounds like Gracie is doing well - all of you are in my thoughts...

Testdriver said...

Do you think Ronald McDonald might try to jump in Gracie's jumpy chair and break it?

Or perhaps hurt himself??

You know, Ronald can sometimes be crazy like that...