It has been forever since my last post- I will credit that to a very active 17m old! The past two weeks have literally been the fastest time has ever flown by. We had the blood drive, Thanksgiving x3, Rowan's 1 yr Transplant Anniversary, and National Biliary Atresia Awareness Day!
(And I also haven't taken as many photos lately either... due to the fact we are constantly chasing her around!)Rowan is doing remarkably well. She is happy, healthy, and getting into lots of mischief. If you're not careful dear things you love can end up in the toilet at our house...We wanted to do something special for Rowan's one year transplant anniversary. Something we felt like was giving back and raising awareness. The Tuesday before Thanksgiving, we hosted a blood drive and had a great turn out! A majority of the people who donated couldn't recall the last time they had done so, and we thought it was fabulous to get so many people out who don't typically do so! We will have to make this an annual thing :) Rowan has received so many gifts of life, we are excited to give some back!For Thanksgiving we were able to participate in 3 family gatherings! Rowan had a fabulous time running around everyone's homes. It was an incredibly happy two days we were able to share. Last Year:Thanksgiving we were in the hospital at Texas Children's. Chance's mom and grandmother brought us a meal and we heated it up in the microwave. My what a difference a year makes! Rowan was so sick at that time. She had been listed for transplant already. Back then, she wasn't eating and had to receive IV nutrition... although I distinctly remember she actually ate some sweet potatoes. It was a very surreal holiday to say the least. My mom came in that weekend and we spent black Friday roaming the halls of the 12th floor.
Chance worked on Monday and my mom planned on heading back home until the most amazing news ever. We had been waiting 10 days for a phone call, and around 2pm the coordinator called to let me know, there was a possible liver on its way. Tears. Instantly.
From the time of that call to Rowan receiving her transplant there were a myriad of people, tests, and logistics to figure out. OH MY- we heard "no news is good news" 1000 times! There would be no guarantees that this would be Rowan's liver, so it became a waiting/ preparing game. Chance was supposed to work on Tuesday.... should we call the rest of our family to come down... what if this is a no go... The hours ticked by and around 9PM I told Chance to come! The night was sleepless. Several physicians would come in to assess Rowan and talk to us. Daylight came and we felt pretty confident the surgery was a go. November 29 will forever be one of my most cherished days. This was the day our daughter received her gift of life, a new liver. Without it, she would not have made it much longer. We cannot imagine the loss of a child, and thank our angel donor's family for making the choice to give our daughter life. We ask God to hug our angel donor close until we are able to meet. Rowan's gift is a miracle that we can never be more thankful for. This year November 29th was probably a very hard time for our angel donor's family as well. We prayed for them.
We also celebrated Rowan's life. She is an amazingly strong little girl with a very promising future.Today we celebrate National Biliary Atresia Awareness Day. Please check out this wonderful video. Rowan and many other miracle babies are in it! http://video214.com/play/Pk1Qxv9T50ohovMb7gdSSA/s/dark
We could not be where we are today without the love and support of our family and friends. Thank you so much for ALL of the "likes", messages, wall posts, food, free babysitting, etc. We are truly, truly beyond blessed!
A Day in the Life of the Colby Kids
It’s that time of year! My absolute favorite time of year. So much happens during this time. First up is Xander’s birthday, then Thanksgiving, then my birthday, then Christmas followed by the New Year…it’s such a festive time. I love decorating the tree, wrapping presents (opening too!), making cookies and sweet treats, etc... It’s not helpful that I eat half of everything I make. ;-) Guess I know what my new year’s resolution will be next year … again.
I mention the holidays because it has made me do a lot more cooking or rather baking than I usually do. I’ve been making all kinds of goodies in the last few weeks, especially for school events. Xander has food allergies so I have to manipulate recipes to make them safe for him. I try not to make him feel left out at his school parties. So far, I’ve been able to keep him happy. What four year old wouldn’t be happy with a cookie loaded with frosting or marshmallows dipped in rice dream chocolate. Mmmm…
Food allergies are so prevelant among transplanted liver kiddos. A huge number of kids are being diagnosed with them at. Xander’s immunologist sends me articles she finds in the allergy journals she reads. Recently she sent one called, 'Management of post–liver transplant–associated IgE-mediated food allergy in children'. I was thrilled because finally they are starting to study it. For whatever reason tacrolimus is playing a role in food allergies.
Xander has several food allergies; dairy, egg, soy and a few others that aren’t severe enough to mention. It was several months post transplant when we found out. He became very sick. He had chronic diarrhea, was diagnosed (yet again) with failure to thrive (FTT) and was anemic. He didn’t have any other symptoms, like hives or vomiting that would have lead us to believe he was suffering from food allergies. His GI decided to scope him, upper and lower, to see what she could find. I’m so glad she did because she found eosinophils in Xander’s esophagus.
Eosinophils are one of the five major types of disease-fighting white blood cells. They are great infection fighters but they shouldn’t be in an esophagus. Ever. They can inflame and injure the tissue there. Since there was a major concentration of them found in Xander’s esophagus, he was diagnosed with Eosinophilic Esophagitis (EE). After we got this diagnosis, we immediately saw an immunologist.
Xander was initially diagnosed with diary and egg allergies. I don’t know why but he didn’t test positive on his skin, which is the most sensitive type of testing. He did, however, test positive in the RAST(blood test). This doesn’t typically happen but it did for Xander. We stripped those foods out of his diet and he started to get better immediately.
Then almost a year later the same thing happened; chornic diarrhea, FTT, anemic but this time he had some vomiting. Xander had to go back in the hospital for another scope. Again we didn't suspect food allergies. The scope was negative, other than the EE. The immunologist tested Xander and found yet another food allergy. Soy. We were happy. At least it wasn’t something serious. Food allergies got us a quick discharge and home we went.
Since we have all his food allergies sorted out, he has been doing great.
I wanted to bring up food allergies because I want parents of newly transplanted kids to know how common it is, especially EE. Unchecked food allergies make life miserable for our little ones; bloating, nausea, cramping,weight loss, etc… So keep an eye out for it and if you see similar symptoms in your child, ask your doc. If I had known sooner, I'd like to think Xander wouldn't have become as sick as he did.
Last time I didn’t post a picture but today I will. This is Xander about two weeks ago getting ready to race down the pier.. We spent a few hours watching the mullet jump everywhere and even got to see a fisherman cast his net and catch a few. It was a good day.
Life is great. :-)
I won't post until next year so I wish each and every one of you the happiest of holidays and of course best wishes and good health for 2012. (((HUGS)))
