Thursday, May 6, 2010

Tube Weaning: Day 7 & baby marching

No change.
Didn't drink. Ate about 10 oz of purees, some crackers. Self fed a few licks of chocolate pudding. Played with a popsicle but wouldn't lick it.

Tomorrow we're going to try spoon feeding some liquids. I haven't quite decided between water or some juice. I got some lemonade, which he's never had before. Maybe he'd like something tart? I don't know.

I wish EI would hurry up and get our feeding therapist lined up. We need help. Clearly.

However, I'm tired of not having good news. Let's focus on something better.Those of you who follow Robbie's blog have already seen, so pardon the repeat. But for those who don't, thank you *SO* much to everyone who donated!


April 24, 2010 was the day we'd been anticipating for months. Our first March For Babies. Team Remarkable Robbie raised nearly $2,800 total. More than half of that came from a couple of our last minute walkers, Sherry & J. Their son, Gus, was born full term but with a birth defect known as esophageal atresia. He spent 107 days in the same NICU in which Robbie spent 96 days. But the rest of the team did very well, too.

Considering my original goal was $500, I don't think we did half bad. I was moved to tears several times when I saw the continued generosity of our friends, family members, coworkers and even perfect strangers. Thank you so much to all who gave!

The day started early. We hoped to be at the walk site in Forest Park by 8am. The walk was slated to begin at 9. That meant our day began around 6. As Robbie doesn't normally rise until after 8, he was a little discombobulated, but mostly in a good mood.

We arrived at the site. The first indication we were in the right place was all the balloons.

It was still early. There were plenty of people there, setting up booths and preparing to meet the walkers.

My company, AT&T, had a booth. Sadly, there was no one working it, so it was just a sign and an empty table. Wish I knew someone in marketing to complain to.

The March of Dimes did a photo-op of all the preemies in attendance. They were all given blue "I was a preemie.." shirts for the photo op.

Sherry made Robbie a stroller sign showing just how far he's come. "From Small Beginnings..." indeed.

Grandpa is here!

David's not so thrilled about the early hour, either.

The back of our T-shirts.

Grandpa insisted on getting the Ram's cheerleaders autographs. "For Robbie," of course.

Sherry and Gus arrive

And J & Charlie, too.

Robbie's still trying to figure out what is going on.

Some more mom friends and their kids join us as well.



Jenn & Becca

Uh-Oh. It's almost race time and Robbie is out cold!

But we're off anyway

Our team is off to a good start.

Gus is a lot livelier than Robbie.

J and Charlie can't be held back any more. They jog ahead.

Oh hey, Robbie's awake again. Maybe this is fun after all.

Nearing the end. Gus needs a stroller break.

Finally the end! Megan walked the whole 3 miles in spite of being 36 weeks pregnant. She's spent!

Grandpa and Robbie hit the snack tents before we head out for the day.

It turned out to be a good day for a walk. It stormed all night and again later in the day, but minus the occasional very light drizzle, we all stayed dry. The news reported 10,000 walkers marched for babies that day. St. Louis is the 9th largest walk in the U.S.

We were very proud to be part of it and are looking forward to doing it again next year. Hope to see some of you there, as well!



wrensmommy said...

sorry it's still not going well... hopefully the therapist will be able to help soon. ((hugs))

thanks for posting the MoD pics. i can't wait to go to ours.. it's so encouraging to see so many people who feel connected/passionate/at least aware of the existence of preemies! :)

S said...

Prayers for a hungry and thirsty little Robbie!!! I wish I could provide a suggestion for you but I have nothing. Just know I'm thinking about you guys!

Searching said...

OH, I just LOVE the shirts you made!!! :) So glad you guys went. I love MoD for all the support they give my babies and parents.

Hang in there w/Robbie. Does he do any certain texture (other than cracker!!) better as far as drinking? Frozen slushy? Not sure how well his formula does frozen but when I had to drink Neocate 1+ I tolerated it a bit better frozen. Still gross, but I choked it down. Do you have the okay to try things like condensed milk or his belly won't do that? Juice shavings in a funny shape? Diff colors if he can do dyes? Let him pick out new cups and just play w/them till he gets comfortable and then add a bit of liquid? Corn oil in the purees for cals? I will pray EI gets a fire lit under their butt and hurries up with the therapist!!!

Tasha said...

Thinking of you today...((HUG))

camille said...

Hi there, I'm a lurker :) Just a thought - does he like yogurt? If so, there are drinkable yogurt smoothies that might be a good transition between solids and liquids. They are thick but can go in a sippy cup or if you wanted to try putting some on a spoon that would work too. Just an idea. If you do go for it, Stoneyfield makes a Yobaby yogurt drink and they are really tasty. The Dannon ones for kids are very sugary so I wouldn't recommend that one.

Nancy said...

Good luck with the spoon feeding - we've had a little success with that recently. A's OT has us doing that at her unstructured meals and she is pretty receptive for at least a few "bites"... the OT said if A watches us scoop the liquid from the cup, it may make the cup less scary. We only just started that so hopefully it helps. Good luck, thinking of you!

Amy said...

Oh man, I totally missed this whole tube weaning journey during my recent busy-ness. Just caught up on all the entries about it. Gah, it really does sound like bungee jumping. Praying!!

shoshana said...

How did the weaning go?
Do you know about