Tuesday, February 1, 2011

Routine

We're getting back into the swing of things.  Chris went back to work today for the first time in 6 weeks.  Scarlett is napping in her bassinet.  I have showered, eaten and done some dishes.  I even got Scarlett to nurse for a little while this morning.  It's like nothing ever happened...

Yesterday was supposed to be my first day back to work after maternity leave.  I can't believe how much has happened since I last worked.  I took two weeks off before Scarlett was born; my last day was the day my sister delivered Zoey.  She was due to be born this week.  Thank goodness for my substitute teacher and my wonderful teaching team; my class is doing well and making good progress without me.

Our neuro-oncology appointment was rescheduled, so we go to see them tomorrow.  After this appointment, we should have a plan for how to proceed with chemo in the next few weeks.  Then Thursday, we revisit the neurosurgery team for another quick MRI and a follow-up.  They keep calling to check on us, waiting to hear that Scarlett is struggling, hearing every time that she is doing well.  Hopefully, this MRI still shows no need for a shunt.

We also get to downgrade Scarlett's medicine today.  Now she takes anti-seizure meds twice a day and a steroid just once a day.  The steroid will wean off in the next week, but she will likely be on some kind of anti-seizure medication for a long time.  She's learning to take the medication more easily, even though it still makes her gag sometimes.  Poor baby!

31 comments:

Heather said...

I am so glad that she is doing well, we are all praying that she continues to do well!

BrownFamily said...

I'm so happy to keep reading such wonderful, wonderful news!

Anonymous said...

continuing to think and pray for you . . . . . i can only imagine how much you are enjoying the "normal!!"

Jessica said...

I'm so glad to hear how well things are going right now. I continue to pray for your family. I'm sure the next battle (chemo) will be difficult as well, but it's amazing what a miracle your little girl is. She's gone from devasting news to fantastic results! YAAAAY! Thank you for continuing to keep us updated. I think about your family often.

Amber said...

I am so happy to hear she is doing well at home! I have been following your story since it was posted on baby center. Scarlett is a trooper!

Sarah said...

So happy to hear she is doing so well!!!!

Jennifer in Colorado said...

It's positively heart warming to hear such wonderful news about Scarlett. Your little butterfly has made a place in so many peoples hearts. It's amazing how people can pull together when there's a common human interest. I'm thrilled to tears that she's home and things seem like they are so normal. I pray that it remains this way and her miraculous recovery continues. She's a true blessing and for God to bring her through this, he must have something very special planned for her life. :)

Anonymous said...

I don't know you but I have been following your story since I heard about Scarlett on baby center. My LO and I sent a little contribution to Scarlett. I don't know if her meds are liquid, but I just wanted to let you know a little trick I learned. If you have a fast flow nipple, put the liquid meds into the nipple of a bottle (unscrew it from the bottle) and just see if she will suck the liquid right out of the nipple. It works amazingly well for us! I hope it may work :) Good luck with everything, and I will continue to be checking your blog and hoping Scarlett can stay strong!

Sandra Lynn said...

I am so happy to read these updates these past few days. Love the new pics of Scarlett and me and my 6 month old say our prayers every night, making sure to put Scarlett at the top of the list.

Love to you all....

andthatsfamily said...

I am so glad things are still going well. I will be praying for the next mri!

Stephanie said...

I'm so excited that you can enjoy "normal life" again with Scarlett! Thank you so much for your faithfulness in updating us through this blog. We pray for Scarlett every day and think of you all often.

Michelle said...

May she continue to do well and thrive and may you continue to have one uneventful day after the next. She is such a beautiful little girl.

Anonymous said...

So happy things are going well. We continue to pray for you every single day!! Love Jen, October 2010 mom

Mersida said...

So glad to hear you're into a routine and just chillin' at home with your baby girl! I pray that all goes well for your little one! Hugs from PA

Cristina said...

The positive news is so uplifting. Thanks for keeping us all posted as you continue on this journey. Continued prayers from our family!

Anonymous said...

It makes me so so happy to hear the continuing good news for Butterfly Scarlett!!
i continue to say prayer for Scarlett and her brave parents, and please know that you are all in my heart in Boston!
God Bless you all

Noelle July 2010
Boston MA

Anonymous said...

I just wanted to say how wonderful it is to hear that you, Chris & Scarlett are doing well & settling back into a routine at home. God is so good! As a RN I wanted to tell you that as Scarlett is weaned from the steroids she is going to experience generalized body aches as a side effect that should subside a few days after discontinuing the steroid. It is a normal but unpleasant side effect of weaning off of them. She may be a little fussier than usual & it will be uncomfortable to be held so I just wanted you to be aware. A little infants Tylenol or Motrin should help. Thought you should know just in case you notice a change in her behavior. I will continue to pray for your family. THe miracles that God is working are amazing. I pray for guidance for you & the doctors as you come up with a plan for the future & pray that God will continue to hold your family in his loving hands. I believe in miracles & I feel that I am watching one unfold with each update, I look so forward to each post & thank you for letting me follow along on your journey. Scarlett is a miracle & a blessing & God has great plans for her & your family. Sending prayers, love, hugs & blessings from Alabama. Jennifer Sargent

Anonymous said...

Glad to hear all is well and that Scarlet's only issue is her bad tasting medicine. Best of luck and I keep praying for ya!

Jaclynn_kyuss said...

How amazing :) Great news. Nursing is demanding and stressful but worth all the missing hair on my head ;) Congrats to you.

Jaclynn

Sandy said...

Doesn't "routine" feel good? So glad you are actually able to say that at last. I know it is just a lull before the next stage, but phew! so far.

Rebecca ((BBC june2010 mama)) said...

Awh im so excited to get on here and read these wonderful updates!! Im so so happy and too glad that everything is going well I pray that everything continues to go well for you all....its def very well needed that little Miss Scarlett doesnt need to fight anymore (even tho she is a very strong amazing little fighter) she needs to live for many many many years and be a happy/smiley baby at home with her mommy and daddy. NO MORE HOSPITAL STAYS for weeks at a time!! Im so proud of her and you guys (Brandi and Chris) you are just as strong and amazing as little Miss Scarlett for having to go through this rough journey. I dont know if I could of been as strong as you two!! In the end its all well worth it!! I think of you three often and I will continue too, you've touched my life in more ways then one!! Theres always a spot in my heart for your family!!! Way-2-Go Scarlett WE LOVE U FROM ALLLLLL OVER THE WORLD!!!!!

Kristyn-BBC said...

I am very happy that you guys get to experience somewhat of a normal life again. Being in hospitals for long periods of times is very tough. We were in the hospital for only a week when our daughter had surgery at 3 weeks and I felt like I lost touch with the world...you, Chris, and most of all, Scarlett are an inspiration to everyone. You guys have gone through so much even though she has only been here for not even 4 months. I hope everything continues to go well, even through chemo. Best of luck to you all :)

Anonymous said...

So wonderful to hear how Scarlett is doing. I didn't know about your sister. I assume little Zoey didn't make it since she was born so soon? Wow, your family has been through so much. I'll add your sister to my prayer list.
BBC Mom

Anonymous said...

I visit your blog a couple times a day just to hear how wonderful she's doing! I too have been following your story since BBC. What a special little girl you have, and what amazing parents she has! Scarlett and your family will continue to be in my prayers. - July 2010 BBC Mommy

Anonymous said...

How great to go back to a somewhat normal routine at home! keep fighting, Scarlett!

Melissa said...

so happy for the update, glad things are getting back to normal.

Kimberly said...

So glad she is doing well and that the concern went well.

Tara said...

So glad to hear that the routine of just being home is going so well! Keep up the good work little Miss Scarlett!!!

Irina said...

I wish her all the health I wish my own little girls! She is a beautiful baby!

Stacey said...

I am so glad she is doing well and you all are getting your lives back to normal! You are so blessed to have such a sweet little girl!

Danelle said...

Thinking of your little family daily and praying for a miracle for blessed Scarlett. Your story has helped me and, I'm sure, many others lead happier, more meaningful lives. Scarlett has given us the gift of perspective. She has taught us to be appreciative, to be content, to enjoy the moment, and for that I am deeply thankful. She is an Angel. God has graced all of us with her. Thank you for your blog. Gloria in Excelsis Dio!