Friday, March 25, 2011

Big Girl!

She passed 13 pounds!  This is awesome news!  She's feeling good and is on NO medication today for the first time in months.  It's short lived, as she needs some antibiotics over the weekend, but it was a great feeling to not have to give her any medicine.  They are very happy with her movement right now - she is grabbing her hands in the middle of her chest, reaching for toys and putting things in her mouth.

All is clear to begin her next cycle of chemo on Monday.  This chemo takes a long time to clear her system, but does not cause too many bad side effects (or at least it did not last time - this can change with continued doses).  Unfortunately, she will get the NG tube while in the hospital.  It is a precautionary measure to ensure she does not lose any more weight in this cycle.  While she is gaining, she is not really eating as much as she should.  Our doctors say they have never had a baby get though this chemo without a tube, so it it inevitable to them.  We are doing it now, while she feels good, rather than waiting until she is already sick to force feed her.  She will still be able to eat as much as she wants by mouth, but we will supplement with her recommended amount of calories into the tube. I will begin to learn the process of inserting the tube through her nose so that if she pulls it out (or it comes up when she throws up...) I can reinsert it without going to the doctor.  Another Mom Up moment, I'm sure.

She will also see a neuropsychologist next week, which is a new addition to her medical team.  This is part of the study protocol, and I am very interested to see how and what they can learn about her at this age.

We're ready for the weekend, and hoping we can get together with some friends!  I am also determined to get her picture taken tomorrow; we didn't get it done yet this week!

Thanks to Tammy and Scott, who just dropped of enchiladas!

18 comments:

Rebecca said...

What great news! Good job Scarlett! :)

Enjoy your weekend! Thinking of you guys and Scarlett daily <3

Jen said...

Yay for 13 pounds! As a funny comparison, my baby was born weighing 9 pounds and gained a lot rather quickly for a while so we were excited for her to slow down in the weight gain department :-) We'd have shared the extra chubs if we could have!

Jen D said...

Very cool! Glad you all have a break.

Jamie said...

Great news even if it is short lived. I am so glad that she is gaining weight and you will do the NG tube wonderfully, I'm sure. Still praying and so glad to see God moving for her and keeping her healthy.

Anonymous said...

Yay little scarlett!!!! I read your entries and pray for y'all many times throughout my day (and middle of the night feedings!). My lo was born October 26 and is 12 pounds, 14.5 ounces so just about the same size as your beautiful Scarlett. Sendimg you lots of love, prayers, and encouragement!!!!!

Stepper said...

She is so beautiful! We're still praying for you all.

Anonymous said...

Enjoy your weekend as you ramp up for another round...she is doing great and is such a blessing! Continued prayers for all of you! Her story is so amazing, she is such a strong-willed little girl!

Kilian's said...

Always glad to read good news on here. I follow your story almost everyday after reading about Scarlett on Babycenter. Sending lots of prayers and love your way from a mommy who cares about you all in South Carolina!

Anonymous said...

Never posted a comment before, but I've been reading about your beautiful baby!

Just wanted to tell you the NG is not that bad. My son has had an NG since last May and while it's a little scarey at first once you accept that it's part of you life now it's not that terrible to deal with. Took us a while (6 months) to actually embrase it because we had the "hope" of a gtube, but once they told us because of a different mendical condition no gtube dealing with the ng was much more manageable. If you need any extra supplies feel free to email me. We have tubes, bags, tape, clear sticky stuff that makes it stay better...lots and lots of extras because my son actually keeps his in now so we aren't changing it every day.

My email is daveandjamiekommer@yahoo.com

Anonymous said...

God Bless you. I've been reading your blog since close to the beginning and your strength amazes me. I love your 'mom up' comment because you have done it over and over with such strength in an unbelievably challenging situation.

We will continue to pray for Scarlett and your family.

kristalucasphotography said...

hey, i'm going to plan a trip up to newark sometime this summer, and want to try to arrange it at a good time for you three so i can do some more photos of you. keep that in mind!!! love you!

Anonymous said...

May you all enjoy each blessed non-medical moment of this weekend. And we'll continue our prayers throughout the next round.

B's Mom said...

I think of your sweet Scarlett often.

jesshaydel said...

I am very happy she met her weight mark.
While our childs disbilities and health issues are differnt. You always have so much hope, faith and love. Thankyou for the inspiration. I pray all goes well in the hospital for you guys.
God Bless your Family and Baby Butterfly

Anonymous said...

omg this just makes me so happy... i pray for the 3 of you every day! you are the bravest mother ever! i had my daughter November 3rd and every time i read your blog i start to cry i wish i could be as strong as you are.... your a hero in my eyes your such a strong mother! and even though have never met you i feel as if i know you and love you! please continue to stay strong and im so happy things are getting better!

Sylvia said...

YAY!!!! Scarlett, you go girl!!! So glad for the little reprieve - hoping that this next round of Chemo goes well and is easier on her and you!! Woo Hoo - 13 pounds!!!

Anonymous said...

I hope you 3 had a good weekend and were able to do the things you wanted to do. I continue to check on your beautiful family every day and pray for you so often. I too love your Mom Up comment. You are doing an awesome job and it is amazing what we can do when we have to. I am so glad your district came through with time for you as well. Do you know if another district can donate days through CTA? If so I will solicite time for you here in Vacaville. My granddaughter born Nov. 13 weighed 12.8 at her 4 month so Scarlett seems to be pretty close to many babies around her age. Yeah for you and all that great momma milk she got. I am proud of you all. Keep up the great work. My prayers are with you as round two of Chemo is this week. Love and hugs Nana in VV from BBC

Molly (from BBC March 2010) said...

I hope you had a good weekend! I will be thinking of you guys as Scarlett begins her next round of chemo tomorrow.