November 19th 2013

Gracelyn had her 6 week bronch today. Dr. G said her lungs look beautiful. They are still waiting on the test results.
While she was under they inserted the nasal tube that is monitoring her acid reflux. She is horribly uncomfortable and is non stop crying. I feel so bad for her. She only has to it in until 3:30 tomorrow afternoon but that must feel like forever for her. I am sure it doesn't hurt, it just is uncomfortable. She is dreading her nightly pills she has to take.

She was still having chest discomfort so they ordered another xray and chest ultrasound. Everything was normal so we are continuing Tylenol for pain. She is also having some side effects from some of her meds. Her face looks sun burnt and she has very chubby cheeks. Her doctor changed one of the meds to see if the sun burnt look would go away. The chubby cheeks are here to stay. She hates them. But we think she looks cute and healthy.

Gracelyn has another cytogam IV injection tomorrow at 9am. The last one was around 4 1/2 hours. So, tomorrow is going to be miserable for her, having the tube down her nose/throat and being on an IV that makes her feel crumby.

She is barely gaining weight but is eating good. Except for today, she is in good spirits and can't wait for the Draacks to come visit for New Years! She reminds me every single day that she is excited for them to come.

She is also working very hard on her school work. She is dying to go back to Bel Air Elementary. She is very worried about getting sick, thou. She is aware of the risks of getting sick within the 1st year after transplant. But, I think the excitement of seeing her friends and meeting her teachers in person is too much to take. She said, "I'll wear a mask everyday if I have to, mom!"

If everything goes smoothly, we'll be home at the end of January. Hmmmmmm, January in Minnesota is not my favorite time of the year :-) However, being home versus being in Houston.......... is priceless!







Sign Up and Stay in Touch

Be one of the first to know when there’s an update to Gracelyn’s website.

Get Gracelyn’s Journal Updates

Comments

4 Replies

Cindy Burrington
By Cindy Burrington
Hang in there, Gracelyn. Your cheeks are adorable...you are a beautiful little girl. I've had puffy cheeks too from some of the medicine I had to take. I didn't like it either, but thank goodness for the yucky medicine that makes us better. So glad to hear you are doing well. I can't wait to give you a big hug!
I am so THANKFUL you have your new lungs and they are working so well! Happy Thanksgiving!
Love,
Mrs. Burrington
Reina Perez
By Reina "Gramcrackers"
Thanks for the update! I am asking for a good night sleep and declaring tomorrow a stress free day and no on discomfort as anticipated. Asking Papa God to give Gracelyn continued healing flow from His throne. Love you and think of you all the time! Continued abundant Blessings
Jen Martinson
By Jen Martinson
I enjoyed seeing the story about you guys in the Sun Focus. We think about you guys all the time and Abby will be so excited to have Isabelle in class with her when you return.
Diana Vera
By Diana Vera
I understand all this process is not easy but Gracelyn is a big and brave girl! She's a model for many of us -adults. I send her a warm hug from Colombia :)