I just got back from visiting the Yores. I hadn’t seen Oliver for a couple of weeks and he gave me a wonderful smile and then immediately buried his head into his mommy in a shy and adorable way. But he kept looking at me, noticing my headband. He is looking chunky all over, and very very healthy. His cheeks are super rosy and his skin looks amazing! He was the most energetic that I’ve ever seen him. I don’t think he stopped moving for the 4 hours I was there. It makes me super happy to see this, because I remember the days when his little body didn’t have enough energy to nurse. How amazing to see him now, glowing with health and having so much energy! Claudia said he hadn’t napped since 11:30, and he finally began to look tired at 7. He is doing a lot more talking. Not just one word anymore, but a whole variety of babbles. While Claudia was pumping, Oliver lay on the blanket and talked to his yellow stuffed duck, in a very serious way. He thinks it’s hilarious to throw his head and upper body backward while Claudia is holding him, and he’s doing the head shaking thing again, this time to be funny. He’s still playing peek-a-boo. If Claudia puts him on his tummy with something tempting in front of him, he can lift up to all fours and if Claudia holds him up, he rocks back and forth. He really seems to get a kick out of this new skill. He is in love with bathing in the kitchen sink and while I was there, when we walked by it he reached out his arms toward it. He laughs a lot now, and for a long time. Claudia says he is incredibly happy, from the moment he wakes up in the morning.

As for oral eating, he is drinking milk from a bottle. It doesn’t seem to be on purpose though. He likes having the bottle nipple in his mouth, and he likes the taste of breastmilk, but whatever is swallowed seems to happen on accident. Claudia estimates he is drinking around 5mLs each time. For comparison, she gives him 130mL per meal when she gavoshes him. One big challenge to eating orally all the time is that he is never hungry. That’s why the plan is to space out his meals more and more, and eventually do away with the continuous nighttime feeds. This will allow his stomach to begin functioning in a more natural way, to contract and expand as it should. Once he feels hunger he will be able to make the connection between drinking milk and feeling fullness, and be more motivated to take in food orally. He is still munching heartily on various foods but sometimes gags if chunks reach his throat. Claudia is going to try mixing some crumbs into his yogurt, a food he already loves. The idea is to demonstrate to him that he can feel chunks and still be OK. He swallows yogurt willingly so that should be a good place to start. 

I have a few photos to share. Sorry but you’ll have to wait until tomorrow. I am pooped!

 I don’t know if there was a poop accident or what, but Ollie got a kitchen bath today. Mom says big brother was there to help. It looks like he really enjoyed it! Oliver is fascinated by water. Maybe he’s going to be a polo player like daddy when he grows up.

Here are some photos mom and Claudia sent me. It’s good to see him so happy. I really miss him!

Mom sent me these photos from this morning. I saw Claudia and Oliver last night and I commented to Claudia that Oliver is beginning to look like a toddler. She didn’t believe me, but just look at him in these photos! He really does have the beginnings of a toddler face.

I should let everyone know too that Andrew and I are no longer living in the area. Starting today we are on the road and I will be relying on others to send me photos and stories to keep everyone updated on Oliver’s progress. If you’re visiting the Yores, snap a few pictures and send them to me. It’s great if you can say a little about what was going on. We all want to know! My email address is silvia@odometer.org. 

Claudia and I set up a little picnic in the backyard the other day. It was a lovely way to enjoy last week’s glorious weather. Everyone ate something different so Oliver had a variety of yummies to choose from. Mommy fed him some yogurt with vanilla and he seemed to enjoy that. Nathan shared the edges of his whole grain grilled cheese sandwich and Oliver gnawed on those enthusiastically. It’s funny though, he made such interesting faces with this one. You would think he wasn’t liking it but he kept putting back in his mouth and it held his attention for several minutes. He was really excited about drinking water and I thought that was pretty cool that he was drinking/swallowing it so easily. Claudia said she thought that was great too at first, but that the OT told her all the kids with oral aversion enjoy water, because it’s tasteless and texture-less. I can’t remember if I posted that Oliver is saying a word now. It’s a-da. Sometimes it sounds like da-da when he’s saying it over and over again. Claudia says he’s working on the L sound too. It’s so cute to hear his little baby babbling.

There are also some pictures from my mom’s birthday party last week. I made some cupcakes for the kids and we topped them with little plastic wall-e’s. I thought he’d enjoy getting his hands in there and mashing up the cupcake. The wall-e caught his eye first and so he took it right off the cupcake. He got a nice surprise when he put it in his mouth! Home made buttercream, no chemicals, with half the sugar. Wall-e got a good licking! Then he moved on to the frosting on the cupcake. He smooshed it with his fingers and soon he was looking like he really wished he hadn’t done that. He was icky all over but it was a fun experiment. 

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Claudia just called me with some fabulous news. Oliver weighs 14 pounds 14 ounces! He has gained 6 ounces in one week. As a result, Dr. O told Claudia that they don’t need to come in for weekly checkups anymore, that they can skip a week! There’s more good news: Oliver’s trial without Pulmicort was a success, and he can stop using it! Dr. O also wants Dr. Rosenthal to re-evaluate Lasix when he goes in for his appointment on 5/21. He doesn’t think Oliver needs that anymore either. Go Oliver!!!

Oliver went to his regular Pediatrics appointment yesterday and he now weighs 14 pounds 8 ounces!!! This means he has gained 8 ounces in 7 days! Wonderful! His weight is still not on “the chart” but his height continues to be, in the 17th percentile, head circumference in the 10th percentile. These are useful markers but of course Oliver will chart his own course. The reason he’s gaining weight so well is probably because he’s no longer spitting up often; it only happens once a week now instead of every other day. Also Claudia is supplementing one of his feeds with coconut oil. I’m sure his level of happiness has something to do with it too.

More good news, Oliver’s hematocrit is back up to a healthy level- it’s at 36 (in the hospital it was at 26, hence the reason they restarted iron drops). Now that he is doing great again, Dr. O wants to trial a week off of Pulmicort, to make sure it is still benefiting him. Oliver’s body looks very strong. His legs are able to support him when mommy’s balancing him. He’s able to push up to crawling position easily, and gets both his legs into position. 

It seems to me like Claudia’s and Oliver’s lives are getting closer and closer to typical now. They are going out more and more and I know she intends to be more involved in Nathan’s preschool again. They’ve been going to soccer games for the kids, shopping trips, etc. It’s much less cumbersome without the oxygen. Claudia continues to find new ways to make her life more efficient. Oliver’s been getting his “food exploration” time every day and I know they didn’t always have time for that before. 

Claudia said she took Ollie outside today and got some chores done. Oliver was even happier than usual, really enjoying himself watching everything that was going on in the yard. They have some big birds that frequent their yard, and there’s a waterfall and of course the dogs and the flowers and all that. He has a jumpy seat now too, which doesn’t reach down to the floor but he likes to hang in it. Nathan swung him gently in a circle and Oliver went crazy with excitement!

I was there when Oliver played with some food. That day mommy tried pureed squash (yuck!). Oliver didn’t love it but he let mommy put several spoonfuls in. So far sweet potato is his favorite. His arms were up in the air the entire meal! He liked the hunk of chicken breast better. The food that made its way to the back of his throat gave him pause, but I didn’t see him gag. I think he’s making great progress in this area.