Here's Carrington right after her first massage from Mama! Doesn't she look so peaceful? I almost see a little smile there :) God is good!
Carrington says hello to all of her followers and new friends and thanks all of you for your prayers.
She got her first card and gift in the mail today and she was so excited!! See?
Thank you to Miss Sandra in CA for my bubbles and card.
Carrington did lose a little weight again at her weigh-in today but that could be due to her giant poop yesterday! Yay!! Good news that her body is starting to do what it was made to do in that area! Today she has still been refluxing and bringing up some of her feeds. Shelly has not talked to the doctor today but is hoping they will decrease her feeds again (and then increase them more slowly) to prevent the refluxing. Someone asked if she was getting her feeds all at once or though a pump. I am not sure but I will ask Shelly. I know currently she is at 13cc's/hour.
We have almost every single night from 5pm until 8am for the next two weeks filled!!! I will be emailing those of you who volunteered again tonight (hopefully) to finalize your shift and the schedule and give you some more details. God is so good and it is awesome to see the body of Christ mobilize in such an amazing way to help sweet Carrington! Lots have asked about bringing dinner for the family, but I think at this time, the best way to help would be to donate to the CHIP IN. A couple of the kids are on special diets so that makes bringing meals a little tricky. The money will be used to purchase gift cards including grocery cards. I keep asking Shelly if there is anything else we can do and she just keeps saying to keep on praying! So, you heard the Mama, PRAY!
If you want to send a card/note/letter to Carrington and/or her family you can mail it to this address:
Cook Children's Hospital
801 Seventh Ave.
Fort Worth, TX 76104
C/O Carrington Burman Room 5418
9 comments:
If she is getting 13 cc and hr chances are she is on a pump for continuous feeds. I pray she keeps them down. Noah is a retcher so I understand what it is like to feed and have it all or part come back up. Luckily for us though he has never become dehydrated with it and the gtube has helped him gain weight so much. As soon as mu husbans is back home I would love to come visit and help out.
Be blessed
Ashlee
It is so good to see Carrington all cuddled up and loved....I would love to know what she is thinking...I bet she is loving all of the attention..so awesome to see her army coming to her rescue and to help her family by staying with her...God is at work in this little girls life. Still praying for Carrington
Stephanie lynch
Hi there,
I am a new blog follower - I found out about Carrington's situation on some of the RR blogs I follow.
Please let Carrington and her family know that our family is praying for her - all the way up here in Vancouver, Canada! We are praying for Carrington to gain weight and to get healthy and to be able to go home with her family!
God bless,
Kerin (RR advocate & mother)
Are larger packages accepted? What size clothing is sweet Carrington wearing? Would love to send a care package. :) Thank you for keeping us updated! I'm just another mom in the DS community... keeping Carrington close in prayer. <3
Just a note to let you know we are praying for you! Our son, Christopher, has some sort of GI disorder and cannot gain weight - different reasons, but he looks a lot like Carrington right now. He is 7 and weighs 20 lbs.
Please feel free to e-mail or friend us on FB or our blog if you have anything you want to bounce off of somebody.
One thing, being fed that small of an amount, the NG tube is probably contributing a bit to the reflux. Unfortunately, there isn't really much you can do until the NG is taken out. It holds open the little valve at the bottom of the esophogus and allows the formula to come back up. It will go the path of least resistance. One bit of advice, when she can handle it please ask for a CT to check and see if she has an annular pancreas. It is when you pancreas grows in a circle around the intestines and can block off the intestines once your feeds get above a set amount. It is common in people with DS.
Again, keeping you all in our prayers!!! Go Carrington!
Stephanie and Christopher
www.ourlittlemanhasmoore.blogspot.com
stephani.wyatt@att.net
Just love that little face :) I am so glad that the card made it.. I sent a little something yesterday that I am sure Carrington will love :) Thanks for the updates... Oh I am so happy that this little girl is here and getting the nutrients she needs :)
So happy to see her smile a little bit. I am sending a card tomorrow.
Hang in there, Shelly!
Peace to your whole beautiful family, and prayers for them all.
Susan
I just found out about Carrington & am heartbroken! I has chills reading all that she has been through & is going through. I hope you dont mind but I posted this site on my facebook status. I am hoping people will pray for her!
Val in NJ
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