I am sitting here trying to decide what to say. It's time for an update on Josh, but I am struggling with what to say. It's just one of those days where I want to say everything is hunky-dory... but it's not and therefore am not sure what to say.
I did take some pictures of him tonight, he was playing with the boys and laughing. It was so cute.
Anyway, today we went back to Primary Children's Medical Center for a Barium Enema. Yep... it was fun stuff. As I sat there trying to tell him I loved him and everything was OK, I got a little emotional. I usually am good at putting up a strong front during dr. visits, tests, therapy, ect. But today was just one of those days. I started thinking what if everything is NOT ok? What if Josh has to do more tests that are hard, painful and terrifying for him? I am emotional exhausted today with everything, and really wanted it to be done. But... fate had other plans. I rushed home to give my mother-in-law a break (she took the kids today to Baby Animal Days and had them for most of the day). About 15 min after getting home, Josh has a blow-out. He had a TON of Barium in his little body that had to come out. I just sighed and got to cleaning him up. As I am taking his clothes off, I realize his NG tube is covered in baruim/poop mixture. GROSS!!!!!! For those of you who don't know much about the tube, it is taped on his face, over his ear and then some more tape keeps it on his back, tucked into his shirt, and hangs down. Well it was down far enough that when the top of the diaper leaked... it got covered. Since he needed a new taping job that I had put off.... I realized I was going to have to take his tube out, replace it with a new one, and cause more pain. Oh... I just wanted the day to be done. It's days like these that I wonder what else can go wrong before I can go to sleep and start a new day.
But on the flip side, he is now OK and forgave me for all the pain of pulling off tape and sticking the tube down his nose/throat. He continues to amaze me with how well he can bounce back after a day like today.
So, for some updates now... he is still a ball of energy. He is all over the house getting into things he never had the energy for before his NG tube. He is not making any progress with the eating, but we kinda of figured that until we get the tummy issues figured out, he isn't going to want to eat. I am so tired of the constipation issue, I hope I can push to get it resolved in the next couple weeks. We will get the results of this test on monday.
Other than that, he is doing good. He is such a good boy and very lovable. He is really into giving hugs and kisses lately. We are so happy to see him being so interactive, it's just priceless.
Enjoy the pictures!