Friday, October 15, 2010

Worth it

As much stress & anxiety I felt about tubing water into Robbie, I don't regret it at all. I almost hesitate to write down how well things have been going. I'm a little superstitious, what can I say? But there is no denying that things are different now; different in a very good way.

I was worried about him starting the new childcare center because of his feeding issues. I knew the adjustment would be okay. He's a resilient kid who rarely sees a stranger. He likes people. I figured it would take a few days to really relax, but he'd do fine. However, I was very worried about his feeding issues. Would he eat? Would they let him feed them? Would they be patient enough to get him to eat? Would they take his corn allergy seriously? Would they remember his rules? Man, did I have it wrong!

He did adjust to the new people pretty well. We are having a bit of clinging at the drop off. Not so much that he doesn't want to stay, more than he doesn't want me to leave, but as long as I stay and hang out for a few minutes first, he does fine. Sleep, however, was elusive. He finally took his first nap this week on Tuesday- his 7th day at the new center. I was beginning to worry he was going to stop napping altogether and we were not ready for that.

Eating has been amazing, though. Our first day, we went through the menu and marked through anything with corn. They asked a lot of questions. I demonstrated the tube, they asked good questions. I was apprehensive and they were quick to put my fears at ease. The first few days, they fed him separately from the other kids in an effort to keep him from the corn. He ate well. They called several times to confirm what he could and couldn't have. I brought in several corn-free alternatives in an effort to keep him similarly to the other children. The teachers seems genuinely excited to report his progress each day.

At first, he didn't drink at all while there, but he would come home and drink a little each night. He has more interest in an open cup than any kind of sippy or straw. He frequently comes and taps my water glass, requesting a drink. It's not a lot of volume, but a few ounces each day. It gives me a little thrill each time.

Every night, his report would indicate good eating. He now sits at the table with the other kids. One day when I dropped him off just as lunch was being served, they served him first. As they placed a plate of chili mac in front of him, I thought "yeah, okay. It'll be all baby food today." But before I could even finish my negative thought, he picked up a piece of macaroni and ate it. I had to pick my jaw up out of the floor. Every day has been that way. One report indicated that he'd eaten some carrots. I went in the next day and asked them what the hell kind of magical carrots they are serving there. Peer pressure is a magical thing.

The teachers are fantastic about reading his needs and doing what they can to get more calories into him. Several days he's had no baby food at all because he's eaten so well. But they still added calories to his food, trying to help beef him up a little. They are definitely part of Team Robbie.

This week he has started to drink small amounts at daycare as well. It's not a lot. An ounce here or there. But he's taken in enough that last night reduced the water I gave him at night to 14oz. Yesterday he drank 2.5oz of milk at daycare and probably 6oz of water at home. Today, I swear I don't think he went 5 minutes w/o eating something at any time. it was actually hard to keep up with him.

I reorganized the open shelf where we store all of "his" food. All of his snack food is now at his eye-level, all drinks and cups within reach. I figured if it works for supermarket marketing, it might work for us. It did. At one point he actually brought me a container of prunes and wanted them. He ate them all. An hour later (eating crackers in the mean time) he brought me another container of prunes and a spoon. Mommy, feed me! I thought a second container of prunes was a bad idea and managed to convince him that applesauce was a better option. He gobbled it all down then went straight back to snacking. A few minutes later, he brought a package of organic fruit bites. He'd never had anything quite that chewy. It was funny to watch him figure it out. The first one took a minute, the rest of the package were scarfed down. I couldn't help but stare.

Even David commented yesterday that he just can't get used to it. Seeing our son eat is the best high in the world. Of course, that comes with a lot of lows when he doesn't. God knows when he rejects food, when he throws it, when he goes all day and eats nothing but Goldfish Crackers, my soul weeps. But a day like today keeps me going.

His feeding therapist came today for the first time in four weeks. (Bureaucracy. Gotta love it.) She was amazed as well. She feels like we've rounded a corner. It's really just a matter of getting his drinking going.

He needs around 950 calories a day. He's averaging around 700 by mouth. Today he probably broke 800. (It's much harder to track when he's eating non stop.) He has lost just over a pound since this last tube wean. Fortunately he has stopped losing and seems to be holding steady. He was a little lower, but those were very dehydrated days, so I think he's hit a stable point. We just need to get him to eat enough to gain. It's not uncommon for that to take a few months, which I'm trying to focus on. It is extremely difficult to see him so skinny, though. I can see every rib when he breathes; his hip bones protrude as if taunting me.

It's definitely not for the faint of heart, this tube-weaning. His therapists help. At this point I think they're giving me more therapy than him. They are glad we're pressing forward. They're impressed with how well he's doing. Their encouragement is.... well..encouraging. This is a task that is very difficult, but seeing him improve day by day is amazing. It's so worth it.



The Quarke Family said...

I'm so thrilled to read this Trish! Really, really pleased for you and for fantastic Robbie.

Deep Thinker said...

Yay Robbie!

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Mrs.Spit said...

I like thinking that I am too, in a very small way, part of Team Robbie.

Trish said...

Mrs. Spit, you've been a member of Team Robbie for a loooooooooong time!

ggop said...

I'm so glad things are finally starting to look up on the tube weaning. Also, the teachers in the new daycare sound very responsible and proactive. I love that they check with you many times. (even if it is a bit tiring!)

Laura said...

This is exactly what I needed to read about today, at the end of a very looong and depressing week of miserable feeding and vomit and huge steps backwards. I am so happy for you, this totally makes my week.

Anonymous said...

Woo hoo!!! So happy for you all. This warms my heart.

Amy said...

Oh wow, this is wonderful!

Azaera said...

Woohoo! That's fantastic news. You guys are amazing. Everyone on team Robbie deserves an award! :D Here's hoping Robbie keeps up the good work!

Searching said...

OMG, Trish, that is AMAZING!!!! What a perfect daycare at the perfect time. All your hard work coming to fruition. He is so close to what he needs! Any way to dunk some foods in something like olive oil? Oil & honey were my lifesavers for calories. I added one or the other to about everything just to try and up my cals. Expensive, but you do what you have to. I am WAY excited about his progress!!!!!!!!!!!!!

Tracy said...

Awesome! What a great update. Hope things continue to improve.

Heather said...

Woo hoo! Seeing other kids doing things does help. Our younger twin, Liam, is no where near the issues Robbie has had, but he is a picky eater and has been on pediasure for the past 5 months as his weight dropped off the growth chart when he was 12 months old. He's also been very late at crawling, walking, anything gross motor related.

The boys started day care this week and I can see some big differences in Liam's walking a lot more instead of crawling and eating a lot more. We're planning on trying to wean him off pediasure (sugar milk I call it) and see how things go.

I'm so glad to hear the new day care is working so well with you. I love that!

Georgy said...

That's great news Trish! Justin is still getting his calories primarily from Pediasure but his solid food intake is getting much better. Here's hoping both of our boys continue down the right path :)