Good Morning! Gracie is sleeping in a bit due to another late night last night so I figured I'd hop on and give a quick update.
So far, the Busulfan hasn't been too tough on Gracie. She has lost a some of her appetite, but she is still nursing some, so Mommy is happy with that. On the downside, the chemo has given her a wicked diaper rash, so diaper changes have become a nightmare. Poor Peanut. We're experimenting with a few different creams and such to see if we can get it managed. Hopefully we will soon. She's still her happy, playful self although she is more tired these days. For the most part, the good outweighs the bad.
Yesterday we had a visit from Occupational Therapy who did a standardized test to see where Gracie was developmentally from their standpoint - motor skills, play, etc. - Gracie tested beyond her age at 12 months+ and boy was there a celebration in room 5! I am so proud of her. She is a total trooper and a pretty smart cookie.
I still hear "MaMa" over and over for most of the day and it still melts my heart each time I hear it, so I guess you can say that Gracie is doing her part to make Mommy's stay in the hospital a bit more tolerable. :) Although I did get a chance to bust out of the jail cell and make a trip back RMH to pick up dinner last night. Oh wow, how easy it is to take advantage of the opportunity to spend time outside. The air was fresh and crisp and the wind was blowing in my face.... if it weren't for my baby trapped back in the room, I might not have come back. :) That brief time out was wonderful. I really look forward to when I get to take the Peanut out with me to enjoy the world we so often take for granted.
Much love and a few new pics.
So far, the Busulfan hasn't been too tough on Gracie. She has lost a some of her appetite, but she is still nursing some, so Mommy is happy with that. On the downside, the chemo has given her a wicked diaper rash, so diaper changes have become a nightmare. Poor Peanut. We're experimenting with a few different creams and such to see if we can get it managed. Hopefully we will soon. She's still her happy, playful self although she is more tired these days. For the most part, the good outweighs the bad.
Yesterday we had a visit from Occupational Therapy who did a standardized test to see where Gracie was developmentally from their standpoint - motor skills, play, etc. - Gracie tested beyond her age at 12 months+ and boy was there a celebration in room 5! I am so proud of her. She is a total trooper and a pretty smart cookie.
I still hear "MaMa" over and over for most of the day and it still melts my heart each time I hear it, so I guess you can say that Gracie is doing her part to make Mommy's stay in the hospital a bit more tolerable. :) Although I did get a chance to bust out of the jail cell and make a trip back RMH to pick up dinner last night. Oh wow, how easy it is to take advantage of the opportunity to spend time outside. The air was fresh and crisp and the wind was blowing in my face.... if it weren't for my baby trapped back in the room, I might not have come back. :) That brief time out was wonderful. I really look forward to when I get to take the Peanut out with me to enjoy the world we so often take for granted.
Much love and a few new pics.
Gracie enjoying her last dinner at RMH for a while.
Our tiny room on the unit
. 
How we get our meds.
And where it all goes in.
But still a happy girl!
8 comments:
Thanks for the update... I figured out how to use Google Reader and I can see when you update now! Yay!
Great pictures. You are so right about taking for granted the air and the wind and the sun when we have it all the time.
Lauren is rediscovering 'outside' this summer... she never got much time out last year. The other day she tried to pick up ants that were swarming in some spilled juice on the sidewalk. And her play therapy group planted flowers last week.. oh the joy of dirt!
HAve a great day. Praying for all of you in that (Oh my!) tiny room.
Kindall & Lauren
Thanks for the new pictures! We miss you guys... :)
Whew! Looks tight!!
Thanks for the photos--we haven't seen our little-g in so long!
Gracie looks good, and happy, and I'm glad you're all together over there--but sorry to hear about the heiny situation. We can't wait to see you. Nuvy keeps asking "Where is Gracie?" She's also learning to say "Minnesota", but she isn't ready for Noni to go there (I'll bet you are, though!).
We love you and miss you a whole bunch!
x's and o's
Aunt Hys, Veruca, and Howler Monkey
Yay! We are so glad to hear the good news and see the pictures. We will keep praying for all of you.
I'm so glad she is tolerating the new drug better, except for the awful diaper rash-poor Gracie. I'm praying that will clear up soon. And yay for her testing at 12+ months!!!!!! Go Gracie, go!!!!
What awesome news about the development being at 12 months! That is great news. Glad that she is tolerating the drugs, but stinks about the bum rash and hope that resolves it's self soon.
Glad that you got some fresh air. Even more glad after seeing the pic of the room size. What a blessing it must be to have the RMH to go back to.
Gracie is just full of life in all her pics. She looks so happy despite what she is going through.
Thoughts and prayers still going your way. Kaede waves "ello baby" to Gracie (well to her pics).
oh sarah thanks for including those pics!! I read but can't picture everything and I really like looking at them. She i so adorable!!
Yeah for getting a tiny bit of outside time. I know it's not much but better than nothing eh? Gracie is gonna rock through this! She is a fighter
Hey S. I know we really don't know one another but I think about you guys often throughout my day!!! I don't know (or can't imagine) what you are going through. So as a new mom like you I think the thing I can do for you guys is send you some love in a box. What do you guys need? Can she have toys? Do you need reading material? What do you like to do? Things that you can fiddle with to pass the time a little better. PLEASE let me know. We are begging you to let us know how we can help you guys. Your Grace is such a trooper and so cute. Hope to hear from you.
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