The T -Shirts have been ordered and hopefully we will have them, in hand, in the next week or 2. (We have to make it home first) This is a new fundraising event thru COTA to help replace funds we have had to use from Emily's COTA acct during this stay, in Nebraska, it started out as a week long stay and will end (hopefully) at 5 weeks.

We have just 2 colors this time, Candy Pink and Sapphire Blue. The design of this represents this: on the front, the horseshoe and clover represents Emily and her running buddy, Chad. Chad has brought so many smiles to Emily's face and has worked so hard in his exercise and dedicated all that time for her. He has become very important in our lives. The back represents 2 things...1. Where Emily is at, since transplant and 2. The fact that in Emily's life, the journey doesn't end with transplant, this is a way of life and an ongoing process.

The cost for anyone wanting to contribute to this fundraiser is $15 for sizes Small thru XLarge and $17 for 2 XLarge or larger. Because of the extra cost for new screens to be made, we will not have children sizes this time.

As we did the last time payments can be made thru COTA at the following page:

http://cota.donorpages.com/PatientOnlineDonation/COTAforEmilyGraceS

Or we can accept cash and we will send in that payment to COTA. If you are paying by personal check either mailing a payment to us or giving to one of our volunteers, please make that check payable to COTA with memo of CotaforEmilyGraceS. We will mail those to COTA so it may take a little bit to clear. If making a payment thru the COTA page: you can just send a private message on Facebook to Dave, me or a volunteer you are working with, a screenshot of your receipt along with color choice(s) and size(s). If you are a distance buyer and aren't buying thru one of our volunteers please also include an address.  Thank you so much.

Update:

UPDATE: about Emily's COTA (Childrens Organ Transplant Association) page: Emily's COTA blog page is over 2 years old now so COTA has discontinued the blog page. We have come back to this original blog page for updates. Eventually I will move over all of the blogs from the COTA page. The donation page for COTA is still open at:

http://cota.donorpages.com/PatientOnlineDonation/COTAforEmilyGraceS

We will be having a new T Shirt fundraiser event coming up soon. The T Shirt is a new design with a new company and has been designed to represent life since transplant. We are so excited about this new shirt. Stayed tuned...

Third times a charm...

I'm sure everyone within the United States heard, Emily had a new feeding device placed (for the 3rd time in a month). 6 adults in the room, 4 of whom were holding her down, absolutely unreal.  Emily now has a new button placed in her jejunum, feeds are running at 90ml/hr (goal to reach is 135ml/hr to enable some time off feeds each day). So far so good, other than complaint of her side hurting which has been the same complaint each time they place a new device before the balloon breaks. Wish her luck on this one.

We have passed day 600 post transplant...

Submitted by Theresa on Mon, 05/26/2014 - 7:19am
Yesterday was day 600 post transplant.
Emily is doing well and has a very busy upcoming schedule.
We went out to Jake E's Riding
Ranch and took some Easter/Spring pictures of Emily and had a great time. (Will add photos)
Last Wednesday Emily turned 7 years old. She had the opportunity to receive a cake through Icing Smiles who assigned a baker here in Texas. Dream cakes in Rockwall made her an amazing birthday cake. We can't thank Mary Shirley enough for the beautiful job she did on Emily's cake. Hard to believe she has grown up so much already. Post transplant (and with the help of being free from TPN) she has shot up in height. She is now 4' 1/4". This coming Wednesday she has a surprise to look forward to, from one of her nurse friends/family, who is taking us to Great Wolf Lodge to enjoy a day of fun. This week she starts preparing for graduation from Kindergarten. She will have practice this week
and on Monday of next week and on June 3rd she graduates. Transplant set her back a year
(unfortunately we didn't know what we should have done to prevent that) but we are here a
graduation point now and couldn't be more thrilled.
In June we will be making a trip back to Omaha for a yearly visit. At that time Emily's NG tube will be changed out for a J tube. While she is in feeding therapy, she isn't even attempting to eat
enough to be considered "making progress". The longer she has the NG tube the more concerned we are that something will happen to cause problems with her sinuses.
That's the short version of Emily's update. I will update again after our trip to Omaha. Thank you for your continued following.

Another monthly appointment...

Submitted by Theresa on Fri, 07/13/2012 - 9:20am
Emily went to see Dr. Baker (her gastroenterologist) yesterday for her once a month
check in. He had to cauderize around her peg tube which she SCREAMED about,
then she refused to talk to him. Other than that she is doing well, labs are stable, for
her. She is now 41 inches tall and 19 1/2 kg on her weight. He said since it has been
a couple of months since her last hospital stay that he was ok with her having an
occasional Cheetos or a little bit of popcorn. To her this was a huge deal, even
though all she does is lick them, she never actually eats them. So last night her and her dad had
some popcorn and she said it was "sooooooo good". So we go back next month, unless we receive
a call for transplant, and continue with her weekly labs. We will watch for any signs of belly pain
with her addition of the popcorn (oh and she has been licking Cheerios as well). So until the next
update...

Another monthly appointment...

Submitted by Theresa on Fri, 07/13/2012 - 9:20am
Emily went to see Dr. Baker (her gastroenterologist) yesterday for her once a month
check in. He had to cauderize around her peg tube which she SCREAMED about,
then she refused to talk to him. Other than that she is doing well, labs are stable, for
her. She is now 41 inches tall and 19 1/2 kg on her weight. He said since it has been
a couple of months since her last hospital stay that he was ok with her having an
occasional Cheetos or a little bit of popcorn. To her this was a huge deal, even
though all she does is lick them, she never actuially eats them. So last night her and her dad had
some popcorn and she said it was "sooooooo good". So we go back next month, unless we receive
a call for transplant, and continue with her weekly labs. We will watch for any signs of belly pain
with her addition of the popcorn (oh and she has been licking Cheerios as well). So until the next
update...

It was 3 years ago today...

Submitted by Theresa on Wed, 07/04/2012 - 10:43pm
that Emily received her call that an organ (small bowel) was available for her for transplant.
Tomorrow will mark 3 years ago that she received that transplant and also lost that same donor
organ and the rest of her bowel. She is actively awaiting transplant again for small bowel, pancreas
and liver. As we wait for that life altering call Emily is being a 5 year old and having fun.

Today we received our Logo...

Submitted by Theresa on Tue, 07/03/2012 - 8:26pm
for Emily's COTA campaign. We plan on using this for just about
everything regarding the fundraising. We are so blessed that
Emily's former teacher, Mrs. Pam has a family member who was
willing to donate her time and talents to create this logo. Thank
you Kelly for all your work on this logo, it looks great!