It has been quite some time since I have posted to this blog. Quite frankly, there hasn't been all that much to write about. Jacob's progress is painfully slow, but slow progress is better than no progress.
One update is about his nursing care. After we won many battles about keeping an at-home nurse we finally lost the war. As of June first, no more nurses. The next fight is to see if we can keep the 3-day per week therapies going.
I have been feeling a bit down lately because of his apparent lack of progress (at least as far as I can see). The therapist promised that he would be walking by the age of two. I really don't see that happening. Right now he is crawling on his back like an inchworm. I see him trying to sit-up on his own, but it usually results in a roll-over. His muscles are just not working for him on the left side. I hate posting this depressing stuff but this blog is supposed to be a reflection of my feelings. I have been feeling quite blue lately. I am looking at an uncertain future and I find it most disconcerting.
On the bright side, Jacob has been drinking more with his sippy cup maybe allowing us to discontinue his nightly feeds with that damn feeding tube. Jacob, by the way has become quite adept at yanking the thing out and allowing the formula to pump out all over him and his bed almost every night. Tonight I am trying something new to keep the tube from getting yanked out - super glue! You know I am only kidding, but with the frequency at which he pulls his feeding tube out, super glue is still a viable option. He's lucky he has a cute smile.
I'll try to post more often, but as I said, there really isn't much to write about sometimes.
