16 Feb Update
We hope everyone had a happy Valentine’s Day yesterday. We enjoyed being home, and Gray and I even got to sneak away for two hours to go see a movie yesterday afternoon thanks to Big Daddy and Aunt Alex. Thanks so much for that…it was nice to feel normal again for the afternoon.
Keegan is doing about the same. His diarrhea is the same as always. He’s not handling the last feed of the day well, if at all, but we’re going to talk to his doctor this week about what we might be able to do to help on that end. It just seems his tummy can’t handle the g-tube feeds at night, no matter what we do. Keegan’s been really enjoying his several hours of freedom from the IV pole lately. We’ve kept his IV nutrition running overnight, and with the several shorter feeds rather than continuous formula feeds, he is completely free to be a normal toddler for 2 hours morning and afternoon and a little in the evening too. We are getting such a kick watching him getting closer to walking. Keegan is quite inventive on the items in the house he’s been using as walkers! We’re still offering him rice cereal with a tiny touch of applesauce for flavor once a day. He only has 6 or so bites, but we are very thankful that he seems to tolerate that small amount of real food without an increase in his other symptoms.
We will take him for labs on Wednesday, and his follow-up with the GI doctor is currently scheduled for Friday. We have made contact with two other hospitals, but this process is probably going to take longer than I would have hoped. We’ll keep calling and keep working on it diligently, and of course, we will keep you updated on our search. In the meantime, we posted some pictures and 2 new videos, so be sure to check them out. Especially the video entitled “I like to MOVE IT!” to see Keegan’s rockin’ dance moves!
I missed the opportunity yesterday, but beter late than never. Yesterday was a very special day for us besides being Valentine’s. February 14 is NATIONAL DONOR DAY – a day to give the gift of life! If you haven’t yet, please take the time to consider becoming an organ donor. Consider the following:
•Almost 95,000 people are in need of an organ for transplant.
•Approximately 35,000 children and adults in our country have life-threatening blood diseases that could be treated by a marrow/blood stem cell or cord blood transplant.
•Every two seconds someone in America needs blood, more than 39,000 units each day, according to the American Red Cross.
You can do several things to let others know of your wish to be an organ donor. Start by giving blood or registering as a bone marrow/stem cell donor. FIll out an organ and tissue donation card, register in your state’s Donor Registry, and most importantly, make sure your family understands your commitment to donation! CLICK HERE to find out more information about organ and tissue donation in your state!
February 14 is also NATIONAL CONGENITAL HEART DISEASE AWARENESS DAY! Congenital heart defects, including Keegan’s defect called Tetralogy of Fallot, occur in approximately 40,000 babies in the US each year and are the most common type of birth defects worldwide. Be aware, and pledge support. With early detection, many lives, just like Keegan’s, can be saved!
Lastly, I’d like to ask for your prayers for some very special people. The first is for a life-long friend of ours, Delaney, and her husband, Kevin, who are going through a very, very difficult time right now. Please pray that they are able to find comfort and healing in our Father, their family, and friends at this time. Second, please keep our friend, Carter, in your prayers. He is a fellow transplant who is battling RSV right now. Hopefully, he’ll get some good vibes from being in our old room on the GI floor and will be able to get well quickly. Thank you SO much for helping us to keep these wonderful people lifted up in prayer.