Oh goodness -- Things here in the Owens' house are a bit stressful right now. Gavin is just a mess. I don't know what is going on in his little body and mind but it seriously is breaking my heart. He is so unhappy. If he is not sleeping he is screaming. It is to the point where we have to restrain both his arms and legs in order to keep him safe. I'm sure some of it is his low blood counts -- He probably feels horrible, but it just seems like something more is going on.
We have decided to have night nursing back and our poor sweet nurse has been left to deal with screaming all night long. I seriously do not know what to do. What else could be causing this extreme irritation? We did labs this morning so hopefully they will give a clue as to what is going on in his little body.
On a more positive note, we got word today that the local Ambucs is donating a special bicycle to Gavin and it is all put together and ready to go. Hopefully in the the next week or so Gavin will be sporting a new set of wheels. These bikes are pretty amazing. The bike is meant to be therapeutic and it will allow Gavin to get the motion of riding a bike without actually having to put the energy into pushing petals or steering. Can't wait to get him on that bike -- I'm sure we will have lots of photos to share!
Please keep Gavin in your prayers -- pray that we can figure out how to best handle him and all his complexities.