Reflux Never Ends

Lisa posted a comment about the number of burp cloths covering Noah in his Easter picture last year. It is comical to see, but unfortunately it's not a funny story that I can look back on because reflux never ends. They tell you it does, but it doesn't. They say that it'll end by their first birthday, but they forget to mention that if it doesn't you're stuck with it forever. My most recent wild dream is that someday Noah will learn to carry a bucket with him wherever he goes and throw up only in the bucket (maybe he'll even learn to clean it out himself?). The last few weeks at feeding therapy they've been tweaking things to get Noah to throw up less. I was really ok with once a day.... I had forgotten that most people don't have to carry around 3 changes of clothes and half a dozen burp cloths for their toddlers "just in case". Anyway "tweaking" means that Noah is throwing up more while they discover all of the things that don't work. One day he happily walked down the loooong hospital hallway stopping every 5 feet to lean over and vomit a puddle before he moved on. There were puddles the entire length of the hallway. That was the first of 7 vomits that day. I don't think they'll ever get him to stop throwing up but I am optimistic that they'll get him closer to the once a day than the seven. Did I ever tell you about that day that Noah didn't throw up? No wait, that was just a dream.

Not About Food

I decided to not post about feeding therapy, but since I don't do much else I've just ended up not posting. Since Noah is really a cutie and is growing like crazy since starting feeding therapy (a pound in 2 weeks!) I figured I would do a picture post to show you what else is going on in Noah's life.

#1 the implant: Noah's doing a great job listening (and even has a few words already!). A highlight for me is when the speech therapist brings out the little plastic snake and Noah says "sssss"- this is a sound he never heard before. I added scrapbooking stickers to the headpiece caps. What do you think?

#2 play skills: Noah's really into some early imaginitive play and is finally starting to stack blocks. He's also learned to kick a ball thanks to Jill the Recreation Therapist at the feeding program.

#3 Easter: I'm apparently really bad at taking Easter pictures. Noah looked adorable, but alas no pics. Here is Noah's last year Easter picture - his first time to church ever (I told you, I'm really bad at it).

Noah wasn't even prop sitting and could only roll onto his side last Easter. What a difference a year makes!

A Day Off

Brian is down in Richmond with Noah today so I have a day off. Well, most of a day, anyway. I have to go to a funeral at 11 (which is why Brian took Noah to feeding therapy) but other than that my day is free. My wonderful husband suggested I do something fun - get a manicure, go to Borders and buy a new book, etc. I think that's a great idea. I'm just not sure if I can fit it in. You see, there's not enough time to do the things that have to be done each day. So a day off means that I have time to go to the pharmacy to get Noah's new erythromycin perscription (it's for motility - he's not sick). Oh yeah, and we really need a refill on Prevacid and Pulmocort, too. And then it's off to Walmart for Pediasure with fiber and some baby socks (since Noah's seem to have all been eaten by our dryer). Then when I get home I'd better spend some time with my poor kitty that's locked in the bathroom with a raging bladder infection. And I should probably cook a reasonably good dinner since Brian will be tired after spending the day in feeding therapy. Hmmmm, maybe I'll order a pizza and get that manicure after all.

Feeding Therapy: the rest of the week

Day 2 went much like day 1, only I was watching and Jamie Sue was feeding. He did eat a little better for me, so that gave my ego a bit of a boost. Day 3 & 4 started the actual therapy.
Since Noah is soooo good at drinking his milk and sooooo bad at eating his food, they didn't actually give him any food or drink the whole rest of the week (don't worry, I fed him later). I think that's pretty much how they start everybody, but they don't want to add in food until he's comfortable with all of the oral exercises so it could be a while (although we did hear a rumor that it might be Monday). Since Noah really likes to pretend to eat, and getting rewarded to do something you really like is double the fun, he was super into the therapy sessions. The other "new" kids were having major issues going back into the therapy room with a stranger, where as Noah was trying to sneak in between sessions. The hardest part of the week is the lack of boundaries. The area is very open and Noah doesn't understand that he can't go anywhere his legs will take him. I'm often dragging him screaming from under the reception desk or heading him off as he tries to escape into the therapy rooms or follow a friendly outpatient home. There is a nice play area, but it's loud and full of bigger kids so Noah only wants to play there first thing in the morning or last thing in the afternoon when it's cleared out. We go outside on the swings when it's nice or ride down the halls in a wagon or a push car, but there are only so many times you can do those things before they get old, and then the rest of the day is spend in therapy or lying in the hallway screaming. On Friday the behavioral psychologist mentioned another play area at the main hospital entrance that she thinks is less busy, so we'll have to check that out next week. Hopefully we can find something, because there's only so much screaming I can take until I let him follow a friendly outpatient home.

Feeding Therapy Day #1 (home baselines)

Today was our first day of feeding therapy. The goal was to see how Noah eats for me, to have something to compare to when we're done. We had 3 therapy sessions. The rules were simple - I had to present each food to Noah but he didn't have to eat it. When I was done I was to call for the therapist (who was watching through closed circuit tv in another room).
Session #1
the foods: pureed carrots, baby applesauce, a sippy cup with 2 oz Pediasure w/duocal
what happened: Noah refused the purees and vomited his stomach contents when I managed to get a bite of carrots in his mouth (normally I wouldn't let it get to that, but the therapist needed to know what would happen). He devoured the Pediasure and screamed for more (which he didn't get).
Session #2
the foods: pureed something and something else (I had ceased to care what I was feeding at this point - it's not like he was going to eat it), veggie puffs, a straw sqeezey cup with 2 oz Pediasure with duocal
what happened: Noah refused the purees and I didn't push it. He threw the veggie puffs on the floor. He let me sqeeze the 2 oz of Pediasure into his mouth and begged for more.
Session #3
the foods: 2 more misc. purees, some popcorn without the kernals (who knew such a thing existed?), 2 oz of Pediasure in the straw cup
what happened: see session #2
When we weren't in the feeding room, I was doing my best to keep track of my newly walking toddler in a non-child proofed waiting area. Fortunately he was too busy screaming in hunger to get into too much. I'm told by the other moms that they get used to the schedule after a few days and find things to do other than just get into trouble. Starting Thursday he'll get 4 therapy sessions, so even if he just eats the Pediasure he won't starve.
Tomorrow is therapy baselines which means Jamie Sue (the therapist) will be feeding and I'll be watching on the tv screen. My biggest fear about tomorrow is that he'll eat everything for her and they'll tell me I don't need feeding therapy I need parenting classes and give me a t-shirt that says "I don't know how to feed my baby" in big letters on the front. Ok, perhaps it's not my biggest fear. But I'd feel awfully stupid if that happened. One day down, 39ish to go.

The Bad Mommy Award Goes to....

Me! It's been a long few weeks getting Noah through his surgery & activation and all the things that go along with that. Add to it a billion appointments since we'll be at feeding therapy for the next 8 weeks and I'm physically and mentally drained. My husband, being the wonderful husband that he is, got Noah up and dressed and plopped him in front of a video so that I could sleep late. When he left for work I was curled up on the couch reading blogs and Noah was still watching his movies (keep reading, it gets worse). At about 9:15 Noah started fussing, so I of course assumed he wanted a different movie. 9:45: Noah's fussing again and stops watching the movie to go play with his toys. His game of choice this morning: "Bring mommy things to eat and laugh when she pretends to eat the silly things that I bring." Want a sock for breakfast? How about the corner gaurd from the fireplace? A blue crayon looks good too. This is a pretty typical Noah game, except for the fact that each time he went to fetch my newest snack he would sit on the floor and fuss for a minute - that is not normal Noah. After about the 4th or 5th item I started to wonder what was going on. Hmmmm.... It's not naptime, so he's probably not tired. We remembered to put the childproof cover on his CI processor so his volume's not too high (I could've written a bad mommy post about that yesterday). Maybe he's refluxing? Nope, I don't hear any milk coming up. Wait a minute. Milk! A few minutes later Noah was happily playing again, with a full tummy, quite forgiving of the fact that mommy had forgotten to feed him. He's currently trying to built a tower so that he can climb it and fall off onto the fireplace without the corner gaurds. Maybe I should go....

The Torture Begins

On Tuesday morning we will be taking our sleeping boy and putting him in the car at 6:30 in the morning to driving to Richmond to see our AV therapist. What kind of crazy therapist makes you get up that early for a session, you ask? She's not crazy, she's wonderful. You see, Noah and I are booked solid for the next 8 weeks from 9-4:30, so 7:30 am is the only time I have available for learning to listen and speak. Why, you ask? We will soon be day patients at Children's Hospital. Our goal? Learning to eat. As a fun way to start that goal, on Tuesday morning our new feeding therapist will lock Noah and I in a room with all sorts of foods that I know he won't be interested in. She said she doesn't expect him to eat them, she just wants to find out how he goes about not eating them. Does he gag? Vomit? Push the food away? Scream and cry? Yes, to all. Why would I put my small child under such diress? Because if I don't we're getting a g-tube. We don't want a g-tube, so instead we're going to feeding boot camp. Every day Noah will have 4 feeding sessions with our feeding therapist and a feeding technician (I'll let you know what this is next week). Twice a week he'll be weighed, and if he doesn't gain appropriately there'll be a public flogging (they're kidding about that, right?). Once a week we'll meet with our feeding team (therapists, nutritionist, psychologist, etc.), and after 8 weeks they'll let us loose in the world a little fatter (just Noah, not me) and with some new feeding skills. We hope.