Sleep!

Finally got a decent night's sleep last night. We put Oliver in his own crib, hoping he'd spend the first half of the night there. Of course, Mr Gassy decided he would rather be in bed with Grandma and Grandpa so they could roll him on his side and help get his little farts out. Luckily he slept in between gas attacks. He came downstairs to eat around 2:30 and was ready to go back to sleep about 3:30. We put him in the bed in between us (this is becoming a very frequent thing) and he put one hand on Jason and one hand on me and closed his little eyes. So sweet. I think I just had to put him on his side once and that was it for the rest of the night. I woke up to my alarm at 7:15, first time I've actually woken to an alarm in about 6 months!

Apparently Tobin decided to be the early bird today and was up at 5:15 and then up for the day at 6:10. Early bedtime for him tonight!

We had a great weekend. Papa Bill is in town and helping Jason with projects around the house. We took Tobin to his last music class of the season and a birthday party with his school friends. It is always nice to get out and visit with other parents and give Tobin the chance to play in new places. Sunday night Oliver was hanging out next to me on the couch and Jason came over to say something. As soon as he heard Jason's voice Oliver spit out his pacifier, got a big smile on his face, and laughed. It was the cutest thing in the world. Things don't come easy for my baby. He has to work much much harder than any other kid to do simple things, so when we see little bits of progress like him recognizing one of us and smiling, it means more than the world. I can only imagine how much I will fall to pieces when Oliver finally starts holding his head up, sitting up, crawling, or maybe even walking. I just keep hoping that all those things come for him despite the odds being stacked against him.

We have a busy week this week. Appts with both our neurologist and his 6 month checkup. Time for the dreaded talk about immunizations. Last I heard, the ped wants to give Oliver the hib, as it's not a live virus. He does agree that we should delay any vaccine that is live as well as completely eliminate the pertussis as it's known to cause seizures and they advise against it for any child with an emerging neurological condition. Still haven't heard back from EI about our next steps (should be getting a copy of the eval and getting on the schedule to start the PT/OT/ST). Still haven't heard back from geneticist's office either. But we do have appts to see hematology and gastro. Maybe the gastro can shed some light on the whole gassy issue...then again, it's likely related to CDG and there may not be anything we can do for it. If it weren't for gas, I think Oliver just might sleep through the night. At this point I'm considering a king sized bed and just keeping him in bed with us so we can doze in between his gas attacks. They took some blood on friday to compare his white counts to our last hospitalization. This will tell us if he's improved or not, and also add one more data point to compare to when he goes in to get his counts checked in early May. If things look better, he might even be able to go to daycare next week since we're losing our live in help on Wednesday. If not, we'll have to pursue a nanny or consider having Jason take FMLA if there is a chance his blood counts will go up at some point. Such a mysterious little guy.

Once I get some 'free time',. I'll post a video of Oliver eating bananas on youtube. He is doing so great on solids and seems to perk up when he gets put in the high chair. He knows the food is coming! We're trying carrots for the first time tonight. Exciting!