Some good news and some discouraging news

Hawaiian bread...yum!

Some exciting things happening as well as some discouraging things. First, the exciting things. So, Ben's physical therapist was here on Monday. She saw how well Ben is doing and said, "oh, this makes me so happy and so sad at the same time. You are doing so well you aren't going to need me soon!" Except for some low tone in his upper body, Ben is doing really well. He has even started feeding himself larger pieces of food. He was eating Hawaiin bread all on his own tonight. Ben has also started cruising around the furniture more often now. And, instead of army crawling, he is crawling on hands and knees almost all the time now. I almost felt a little sad to see him stop army crawling, because it means he's not a little baby anymore. But, he does have to grow up at some point.

We also have had quite a few labs done in the past week. His labs came back yesterday, and the APN said that they all looked really good for the most part. His prograf (immunosuppressant) was a little low. So, (and this is the slightly discouraging part) they want us to switch the time of his meds so that he is not eating right before he gets his prograf. We switched it to 6 pm yesterday and he looked so pitiful watching us eat and wanting to eat. I gave him a little Hawaiian bread and he got a little happier. But, he likes eating with us. So, we are going to switch his prograf to 5 am and 5 pm. That way we can still eat dinner as a family at 6. He needs to take it on an empty stomach, so he can't eat an hour before or an hour after. They are hoping this will help the absorption of the meds and that way we won't have to keep going up on his prograf dosage. But, it is a bit discouraging because of the fact that it was nice only having meds twice a day and now we're up to 6 times a day. He gets the prograf at 5 and 5 now. Then 4 other meds at 7 and 7 and cytra at 8:30 and 8:30. Though we are hoping that he will be going off of cytra soon.

The really hard part is he still has his cold and so he is still eating very frequently. So, today. I fed him at about 3:45. Then I gave him his prograf by 5. Well, of course he wanted to eat again at 5:10. I was able to hold him off for a little while. But, by 5:45 he was completely hysterical and would not calm down for anything. So, I nursed him and at 6 he ate some bologna. Well, since he had gotten so frantic, he ate really quickly and kept wanting more food. I stopped him after eating a whole slice of bologna, but he still threw it all up. :( We're going to have to figure something out, because I can not keep listening to my baby frantically scream because he wants to eat. It goes against every instinct I have. Hopefully he will get used to it and stop getting hungry right around then. Otherwise, the only other choice we have is to do his prograf 3 times a day. Which is even harder, but it may be what it comes down to, unfortunately. The other problem with the timing of prograf is, when we do his labs and have to get levels for prograf, we have to hold the prograf until after his labs. Well, the earliest the lab opens is 7 am. So, it would be bad to hold his prograf for 2 hours. Generally they don't want it more than an hour either way. So, it's ok to give it an hour early or an hour late,  on occasion (not all the time). But, they don't want it getting really late. So, we will have to ask his transplant pharmacist what we should do about that.

In other news, Ben's cold does seem to be getting slightly better. He isn't coughing as much and he does not sound as phlegmy when he lays down or when he nurses. Though, he is still eating frequently and still waking up in the middle of the night to nurse and then staying up for a while after he is done. So, the antibiotics must have helped something. But, lucky me, right when he started getting better, I got whatever it was that he had. Fun times. So, now I have a cold and all the kids are getting over their colds. Ah well, such is life when you have young kids. They bring home tons of germs. Especially when they are in preschool and kindergarten. I guess we are lucky we haven't had anything much worse than colds and sinus infections. So, that is good. Hopefully everyone is well soon and we can ALL stay well for an extended period!