Nine weeks old

Joey is 9 weeks old today...wow. Joey had a good day yesterday hangin' out with his mobile buddies. Imagine the pictures Mike has up of Joey in the little blue outfit with his mobile, but make the outfit green. That was our Joey yesterday...cute as can be and trying really hard not to fall asleep (heavy eyelids and everything). We had a meeting yesterday with the doctors to make sure we're all on the same page. What's happened to Joey is so rare, that they are having some difficulty predicting what Joey's life will be like, but one thing they agree on is that it will be short. They told us that 10 years was pretty generous and it likely wouldn't be more than 5 years. That's providing Joey can stay infection free and that he gets more stable from where he is now. The next step for Joey is going to be getting a trach and a G-tube placed. The trach will establish a more permanent airway and hopefully lead to less clogging of the tube and fewer episodes like he's been having the last few weeks. The G-tube will help with feeding by putting the food directly into his stomach from the outside (through the abdomen wall, not up the nose and down the esophagus). If you've noticed from the pictures, Joey has no neck, so placing the trach may not be possible until he grows a neck (Joey has too many chins). This next step will be good for Joey because it will get things off his face and out of his throat (no gagging), but it will be putting him through a pretty major surgery and require him to be sedated for 2-3 days after to let the trach site heal. Joey didn't do so hot with his last surgery to get the central line placed, so that is somewhat concerning. We'll know more about when the surgery will happen next week when the ear, nose, and throat doctor looks at Joey. The second spinal muscle atrophy test did come back negative, so we're still waiting on some blood clotting tests and waiting for him to have surgery before we can move forward any more. We're still playing the waiting game and spending as much time as we can with Joey. Please continue to pray for Joey and for Mike and I as well. Thanks so much.