Nolan the Happy Boy

When I got to Nolan's room this morning he was up and probably the happiest baby I have ever seen. Here is where in life that we MAY have the advantage over other parents with a 10 month old. Our

child was hooked to a machine that made him bed ridden for 101 days having to figure out how to entertain himself, learn how to self-soothe at an early age, fall asleep on his own and build a sense of patience. Not only that, I am pretty sure he felt like complete dog poo during that entire time. Now, he is like..."WOW, this is how I am supposed to feel? Life is GOOD!" So boom...happy baby, except for when he throws up or needs a diaper change. Other than that, he is really bubbly, funny and pleasant. Sorry - had to brag a bit. :)

I have to correct something from yesterday. I thought Nolan was to receive an upper GI endoscopy, however, the test he got was something different. I was allowed to go with for this test. We went to X-ray where they placed dye into his belly and took a few pictures. We then went back to his room and he got three additional X-rays, 30 minutes apart, to see how this dye was emptying. I am not sure what the name of this test was, and unfortunately, I do not know the results. With that said, I am pretty sure we are not going to be discharged tomorrow, which means we may be here through the weekend. Again, not sure...but this is what I am anticipating. Tomorrow morning we should know the results of this test and our next plan.

Nolan had a great day otherwise. He had a few throw ups here and there, but not

as bad as I have seen in the past few days. We have adjusted his feed amounts through the day, so that is probably helping some. They have also decided to speed up his weaning process, which we are OK with because weaning his sedation has not seemed to bother him a bit. The sedation meds could also be why he is throwing up often, which is why they have made the decision to speed up the wean.

He had a great speech therapy session. He actually let me put a bottle in his mouth, with the formula he had been using, and he attempted to suck. He got the motion down a few times and he shows signs of interest, so that is great! I loved sitting in the rocking chair, giving him a bottle. I have missed this for 5 out of 10 months of his life! He looks at me like, "Wait, this seems familiar?" Following speech he had physical therapy and did really well. Physically, we think he will do great! I think once his sternum heals completely, and he feels comfortable on his belly, he will be all over the place. Practice, practice!

That was really our day. As much as we want to be discharged, honestly, we are going to be here anyway. This doesn't deter our normal plan on getting home mid-March after his next biopsy, which is sometime the week of March 17. If that all goes well...we are outta here!!!!

Matt got here today. We haven't seen each other in almost 2 weeks. SO, I look forward to some time with him...and braving another snow storm that I hear is coming. Spring...hurry up and get here!

#nhos