Oliver is doing great. He has suddenly become very active. His rolling over has become more like a flip, he is sitting up almost without support, and he waves his legs and arms like crazy. It’s not a hyper excitement, it’s genuinely new physical energy and confidence in what he can do with his body. He is talking more and sticking out his tongue and blowing.

This may explain in part why he only gained one ounce last week. The doctors are wanting to see half an ounce to one ounce per day on average, so this was surprising, especially given that he has been gaining steadily overall. It may be time for an adjustment in volume (Dr. O did this already), or maybe an adjustment in expectations. Claudia and Tom are going to get some clarification on this point. We know we want Oliver to grow of course but what is really possible? What is really the best thing for him? We’re wondering if the spitting up might be an indication of too much volume. If reducing the volume will end spitting up, it may be in his best interest. There are emotional considerations as well. It’s traumatic for him to spit up.

Next week Claudia and Tom are going to meet with a doctor to discuss the possibility of getting Oliver a G-tube (gastric feeding tube). Here’s a brief description for those of you interested:

http://www.wisegeek.com/what-is-a-gastric-feeding-tube.htm

The surgery is minimally invasive but might require an overnight stay. I’ve done a little research on what parents think of it and pretty much everyone I saw on the internet was happy with the G-tube. For Oliver it would mean less “stuff” on his face, and less discomfort at the back of his throat. Oliver has been labeled as having food aversion, because he is adverse to swallowing. Getting that NG tube out of his nose and throat might help this. From what I’m reading, the NG tube is used more in a temporary capacity, and the G-tube is made for long term use. We know that Oliver’s transition to oral feeding will be a long process, so it’s a viable option for him.

Some other updates: Claudia is seeing a new OT. Her name is Terri I believe and she works with Early Start. She met with them last week and Claudia really liked her. She believes that Oliver should be on a G-tube and is surprised that his doctors haven’t pushed for it. She gave Claudia some food for thought about what the NG tube might be doing for Oliver emotionally. She also told them that they should consider going back in volume/feeding interval to when Oliver wasn’t spitting up, and that he is on track to catch up on weight/size by his one year birthday. Her point was that perhaps Dr. O should not so ambitious with his growth goals. This is yet another contrasting opinion that Claudia and Tom will have to evaluate. But it’s all good, as long as the opinions are coming from experienced and knowledgeable people. She also recommended that they test Oliver for reflux with a dye test. Alternatively, they could ask their doctor for a prescription for Zantac and see if this remedies/helps the spitting up.

Oliver’s skin looks beautiful! The raw and red areas have cleared up and he has minimal irritation now. One of his nostrils is recovering from some scabbing from the NG tube. Also Claudia reduced Oliver’s Pulmicort from twice a day, to once a day (with Dr. C’s permission). After 3 days on this regimen, she will cut it out altogether for 7 days. Dr. O will monitor his lungs and this way they will determine whether Oliver truly is benefitting from this drug or not. If he doesn’t need it anymore, that will leave Oliver with just ONE (!) drug, Lasix. Yay!

Well that’s about it. Take a look at the pictures for yourself.

The long-awaited appointment with Dr. Cornfield happened today. He reduced Oliver’s oxygen from 1/8 to 1/16. He’s going slow with Oliver because of Oliver’s history, is what he told Claudia and Tom. He took Oliver’s Xopenex away, but wanted to keep Pulmocort. Claudia was instructed to use it if Oliver gets a cold or seems like he’s working harder than usual. Overall, he was impressed with Oliver’s progress. He said it’s likely that Oliver still has some lung issues, aside from the emphysema that he had before the lobe was removed. However, he expects these smaller issues to resolve themselves over time. He did not perform an x-ray, just listened to Oliver’s lungs. He scheduled a 6 hour test, to see how Oliver performs without oxygen. They’ll have Oliver at the lab, doing normal things like eating and playing, and they’ll record his oxygen saturation over the 6 hours. This will give Dr. C the data he needs in order to determine if Oliver should continue to receive oxygen.

Claudia asked Dr. C for his opinion about a G-tube. Dr. C thinks it would be a good idea, because of the nasal damage that the NG causes. He recommends doing it at Stanford because he thinks it’s a good idea to monitor Oliver overnight. He says Oliver would be intubated for the procedure, but afterward, be immediately extubated.

Oliver weighs 13 pounds 11 ounces today!

Oliver is looking BIG. He weighs 13 pounds 8 ounces, up 5 ounces from a week ago. Claudia says he is actively preferring to sit now, rather than lay down. Ingrid and I babysat Oliver yesterday while Claudia picked up Bella from school. He had received one of his booster vaccinations earlier and was acting a bit out of sorts. Really sleepy, but restless in an energetic kind of a way. We picked him up and read books to him. His favorite again was the book with the big animal photos. He loves it when we make the animal noise. Of course he doesn’t get tricked, he looks at my mouth because he knows that’s where the sound came from. We sang a bunch of songs too, like Twinkle Twinkle Little Star and Hush Little Baby. Some Christmas ones too. Ingrid likes to sing Jingle Bells, batman smells, robin laid an egg… I told her I didn’t think Oliver would like that one but boy was I wrong. He gave her the hugest grin! When Claudia returned we put Ollie in his highchair and filled the tray with different foods and inedible objects. He put the mandarin orange up to his mouth but it didn’t hold his interest long. The baby biscuit was completely ignored, and pushed off the table more than once. He apparently hasn’t been interested in one since that OT appointment. Kids are so funny, just when you think you have things figured out! I was cutting an apple for Claudia’s salad and asked if I could give him the core. She said sure, but he’s never liked it yet. We had tried pear in Tahoe and he seemed put off by how slippery it was, and cold. It didn’t seem like it would work. So we were pleasantly surprised when he did put it up to his mouth, and it kept his attention for a few minutes. This is great progress! It’s exactly what we hope will happen right now. It seems small but it’s actually significant. He is accomplishing his first step toward oral eating.

Happy 7th month birthday, Oliver!

Oliver’s trip to Tahoe was definitely a success. He did marvelously on the long car rides, especially for someone who usually doesn’t sleep in the car. The altitude made him sleepier and less hungry, but he was smiling and laughing all day long.

You won’t see any photos of Oliver in the snow; it was too cold for that. Sledding was lots of fun for the rest of us, but for Oliver, the trip was about being with family and giving mommy and daddy some R&R. He got to have his adoring fans around him all day long, and his mommy got lots of helping hands. He got to watch us do our zumba classes, and play cards. We got to be with Oliver 24/7; it was a fun vacation for everyone!

The firehouse pictures are from our first stop. Hard to believe, but Oliver did not need a break from the car until we got to Auburn. I think that’s about 3 hours into the trip! I got carsick pretty much immediately and so Claudia sat in the middle seat with Oliver and our 3 little ones in the rear. She entertained Oli, pumped milk, and served everyone lunch and snacks! Oliver did not complain much at all up until then. Once we got him out of the car, you could see the relief in his face though. He was so happy at that firehouse!