Sun. 4/6 - update

I was greeted with a smile as I entered the room this morning. Something I always pray for before I come! We went for a walk shortly after and boy you could tell it was going to be a good day. He was cutting up, talking with the nurses at the desk, just being "silly Caed." We walked to the sky bridge and decided to have a RACE! (He wasn't in his wagon, but he was hooked up to the IV pole.) On your mark...get set...GO! Caed and I raced while Daddy tried to stay close by with the pole. Of course, Caed won again!! Once we got to the end, he wanted to do it again. Mommy was out of shape, but I rested a minute and was ready to go. He continued to have a great morning. When we got back to the room, he wanted to play in the sink. (something he always loved to do at home) We got his Batman figures and other toys, grabbed a stool, and let him make as much of a wet mess as he wanted! Soon, we had family come to visit: Grammy, Great-Granny, MeMe, Uncle Scott and Aunt Kelly. (Todd's side) Then, some of my family came: Grandaddy, Nana, Aunt Megan, cousin Xan, Reagan, and Caleb. He had a full, fun day with lots of family around. This evening Caed got completely "unhooked" for about an hour and 1/2. He hasn't had that luxury in quite a while (since they put in the feeding tube). We put all the kids in wagons and headed outside. It was a beautiful evening! They wanted to race, so we found an empty parking lot close by and had lots of fun. Finally, they got out of the wagons and wanted to race on foot! Caed and Reagan raced several times....again, Caed won!! He got tired after a few times and wanted to sit on the curb to watch instead. When we went back inside, we headed to the playroom and he, Reagan, and Xan played and played. As I sat and listened, it dawned on me that this was the 1st time Reagan & Caed had actually "played" together in 36 days. It was just like at home...Reagan telling him what to do and say. ha! They had so much fun, and I truly think if even for a few minutes, Caed forgot where he was at and felt like his regular, normal self. He even got to play a little soccer with Daddy. Finally, he told us he was tired and wanted to go back to his room. We gave him a bath (which he doesn't like because we have to tape up his chest and abdomen). However, he sat in there a little while and played with his toys. As soon as we got his gown back on him and into bed, he was out within minutes. This was a very good day!

The doctors' report: Caed has been running low grade fever for the past 2-3 days. They aren't sure why. Today Dr. McGill wanted him to have another c/t scan (looking for an abscess, obstruction, etc...), and also a ECG (echo cardiogram). They have taken cultures from his chest catheter (all been negative), but this test will show if there is any infection around his heart. Caed had the c/t scan this evening, and Dr. McGill just called us and said it looked great! (no problems) He will have the ECG tomorrow sometime down in PICU. He will be sedated for that. He has to be very still during it, and if there was no sedation...let's just say, it wouldn't happen! He is a VERY anxious boy when it comes to all these tests and procedures! Caed did get sick a few times today, but not a lot. He also had a couple of bites of cheese pizza again! We have noticed the past 2 days that Caed's face is pretty swollen. We told the dr. this morning. He wasn't sure the definite cause, but will look into it further if it stays this way. His GI dr. only increased his feeding amount to 18 cc today. I was very glad. Tomorrow they will go up to 20. I think we're going to be ok. We are going to ask the drs. if it will be possible for Caed to be totally "unhooked" for at least an hour each day. We saw how good it was for him. Dr. Goldthorn has been just as concerned with Caed's emotional and mental well-being as his physical. She has really pushed for the park days, so we know she will see this request just as important.


Therefore, since we are surrounded by such a great cloud of witnesses, let us throw off everything that hinders and the sin that so easily entangles, and let us RUN with perseverance the race marked out for us. Hebrews 12:1


One of Caed's favorite things to do...play in the
sink. He finally feels well enough to do it here.


The "Wagon Brigade" (Caleb, Caed, Reagan,
and (cousin) Xan)


Wagon races in the parking lot with Daddy,
Grandaddy, and Nana


Foot races! It feels so good not being "hooked
up" to anything for a change!


"Come to me, all you who are weary and burdened,
and I will give you rest." Matthew 11:28