Thursday, January 29, 2009

Pretty in Pink..........celebrating for a special Angel

Happy Birthday sweet angel.........
Sporting my new Valentine attire. Got to love Old Navy!

The twinkle in her eyes just melts my heart.


Happy Birthday to my heart friends! Love you Owen and Annabelle!



Lindsay had an exciting day yesterday. We participated in the celebration of Angel Annabelle's 1st birthday. A cupcake with pink frosting and dolling up in pink was a must for the occasion. Mom even released pink balloons up to the heavens in the snowstorm as well! We thank God every day that we are a part of their lives and we thank Annabelle for sharing her story with all of us. We are blessed in so many ways. We also celebrated Owen's 1st birthday as well. Owen is a heart brother that is also waiting for a new heart. Please join us in following along in his progress. Things about Lindsay and Owen are very simular so it is interesting to follow along. Happy Birthday to our heart friends!
Lindsay has been doing fabulous this week as well as last week. She had her blood draw on Monday and her CD20 levels were not high enough to do another dose of Rituxin this week. Another blood draw will happen this Monday to determine if next week will be the time for the dose. I was really not surprised that she wasn't ready because if we look back, it took her 3 weeks last time before her levels were back up but unfortunatley last time, she got sick and started her potassium issues, so they decided they would hold off on the dose until she was better. It worked out anyway because she is having alot of company this weekend and she will be feeling well for it. If she were able to get the dose, she would probably not be feeling the greatest. So, praying that she is happy when her visitors arrive. Uncle Rick from CA is coming to town and also Aunt Pam and Uncle John will be here from IA. Not to mention that Daddy will be here tonight or tomorrow along with Cole & Cruz and Grandma & Bill arriving on Saturday. Kirk and Jody will be arriving Saturday afternoon and the rest will be here Saturday night. So, she is sleeping as I type this, so she is resting up for all of the excitement!
Things are the same as far as her care is concerned. Maybe in a month or so, doctors MIGHT consider doing a heart cath to see what her pressures are. If they are low enough, we might have a conversation about doing the hemi-fontan again. Last cath results showed that her pressures were aroung 16 or so. They really need to be in the single digits for the hemi, so we shall see when the time comes. For now, it is just in the back of our heads as a thought. Another would be to change the shunt size if she were to start to develope problems. We do consider ourselves lucky because not all children have possible other options other than a transplant. So, as much as we pray for that new angel heart, we also pray for these other options in case we don't get that heart. We are blessed that we have these options and we are blessed because we have all of you praying for our babydoll. Keep it up! God is listening!
Love, Suzie

9 comments:

The Simmons Family said...

Thanks for the Happy Birthday shout-out! It was a wonderful day :). Bummed that Lindsay has to hold off on her next rituxin dose.. but great that she'll feel good for her visitors (and many they will be!) Such a little popular one .. that princess.

I love the valentine outfit and cupcake onsie.. so precious. We're always praying for Lindsay's heart to come soon. I know the struggles of the whole process and we're home.. I can't imagine waiting in the hospital (although I'm sure I will soon enough).

Hugs to you all!
Andrea

Stephanie said...

Absolutely adorable pictures of your beautiful baby girl!!!!!

Praying for her new heart to come quickly so she can come home with you!!

Katie said...

She's so beautiful and I love her valentine and cupcake outfits! Too cute ;) Glad she's having such a good week and that the possiblity is still out there for the Hemi-Fontan. Thankful for your friendship!!! Have a wonderful time with your company this weekend!
Love,
Katie

Steve said...

Oh, she is so precious! I really had no idea that Lindsay could potentially have other options! We will pray that the best for Lindsay happen in due time. In the meanwhile, enjoy your wonderful family and friends who are coming to visit! I am so glad that you can have company during your stay. Say hi to J.R. and the boys for me, and kiss that baby girl! We keep Lindsay and your family in our prayers always.
Love,
Michelle

The Butcher Family said...

Oh Susie, I am so JOY-ful seeing Lindsay all decked out in PINK for Bella Boo's birthday! You know that I adore your baby girl and she is so so incredibly dear to our hearts...seeing her celebrating Owen and Annabelle is just precious!
Sounds like y'all have a busy few days coming up! I hope that everything goes so well for you...we are heading to MUSC tomorrow so I'll be on the road for a while and give you a call!
Love you, sweet friend~ Rebecca

Anonymous said...

Hey Susie,
Haven't written in awhile and just wanted to let you know we are always thinking and praying for you. Lindsay has grown so much and looks so strong, she's so determined just like her momma. Enjoy your time this weekend with the boys. Praying for that miracle to come.
Love,
Travis, Jill & Reagan

Anonymous said...

She truly is a little princess. I hope everything continues to go well for you your family and of course the princess.
Esperanza and heart brother Miguel

About us... said...

Thank you so much for your prayers for our daughter Lilliana... it was a true stroke of luck that I found your blog, it is so comforting to read about other family's in very similar situations! Your daughter is just adorable and it melts my heart to hear about her journey, what a fighter. Our prayers will be with Lindsey and your family as well! I'll be "stalking you" too :)
Blessings,
Lisa Bourdykin
(thebourdykins blog)

Steve said...

Hi, Lindsay! Your momma's going to need to teach you how to blog so that when she goes home, you can update! We're eager to hear how things are going with you and see more princess pictures! Tell your mommy, daddy, and big brothers that we miss them and are praying for you all every day.
Love,
Michelle