Tuesday, August 31, 2010

Feeding update

Thanks to everyone for the suggestions on corn-free foods.

I spent a while at Whole Foods last weekend with some (expensive) results. I didn't find anything in the cereal aisle, but I did find potato crusted fish sticks, corn free breaded chicken nuggets, a number of different kinds of crackers & chips, some sweet potato fries and a few other odds and ends.

So far, he doesn't like the fish sticks (frankly, neither do I. Blech.) but is sort of okay with the chicken nuggets. He liked the sweet potato fries up until a point. They have pepper on them, which isn't too hot.. until about 5 minutes later. He freaked out. There was clutching at his tongue, drooling and frantic whining. Way to go, mom.That's just how to get your kid to like food. Unfortunately they only had 2 options, and the other was jalapeno. So much for that. I'll try to make my own next time.

At Maureen's suggestion, I checked out the chocolate chex. That is probably our biggest win. He loves them. He ate 1/2 cup of them yesterday. That's about 85 calories, and they are fortified with a number of vitamins & minerals. He liked one of the kinds of pita chips and I was impressed he was able to eat a whole one one day. They're large and very difficult to crunch through.

He has definitely improved his eating again, though. He even let me feed him some purees on Saturday. It had been nearly 3 weeks. I was so nervous that my hands were shaking, but he did great. He ate about 6.5 ounces with little protest.

I've also been working with him on self feeding with a spoon. It's very challenging since he doesn't really WANT to eat stuff, and then if I can talk him into it, he's not great at it. My method of choice has been to just put a very small container of yogurt and a spoon on his little table and let him make a mess. He likes to stir and sometimes will sort of lick the spoon. Mostly he drags it all over the house making a mess. The cats are happy, I'll say that much. That's a morning activity, only, though. David doesn't seem to have the patience for the mess.

Mostly it's just been nice to see him enjoying food again. Still no real luck with drinking. I found some corn syrup free chocolate syrup (nestle nesquick for anyone interested) to flavor some milk with, but he won't even try it. Drinking is so intermittent that it's hard to catch the right mood. He won't drink a drop for weeks at a time, then will pick up a cup and drink an ounce or two of water out of nowhere. I can't leave milk out all the time, so I can't have it available 100% of the time. And if he's expecting water and gets milk, he is unhappy! But one of the days, we'll get him to try it and he'll be happy.

He had an evaluation by his new OT today. She seemed nice enough. I made it clear what my concerns are (feeding & drinking, and decreased water phobia) and what they aren't. She seemed okay with that. I didn't get a formal report, but we'll go through the whole thing at his next IFSP next week. She did comment several times that his fine motor skills were quite good, as were his oral-motor skills (she seemed surprised. I don't know why people never believe me when I tell them that.) so we'll see what she says as far as therapy recommendations.

My hope is that at the IFSP we can go to just three therapies per week (down for 4 every week, 5 some) and to combine either OT or speech with feeding therapy on the same day so that we're not tied to the house almost every day. I'm really hoping that she'll agree to OT twice/month, not even every week. We'll see what they say and what kind of scheduling we can work out.

I'm just not really convinced that any of the therapies are working great except maybe speech and I'm finding myself more and more resentful of the time factor. I'd like to be able to have play-dates and park visits, but instead we're stuck at home for therapy appointments all the time.

He'll be starting a new daycare on Sept 27 and be with other children closer to his age (there is only 1 his age at daycare now) and I think that will help a lot with his development as well.

Really, I have great hopes for the next 6 months. I just need to be patient and let them come. It's easy to say, but a lot harder to live. I'm trying very hard to focus on the big picture, but sometimes it's hard to see much beyond having a spoon thrown at you or the fact that he still doesn't call me momma. I'm a worrier by nature, but Robbie has certainly proven to me that he is far more capable than I always give him credit for. I need to trust him...and God.


Monday, August 23, 2010

In it to win it

It's been a long week.

Really, it started last week and just continued into this one. Robbie got a cold in the middle of last week. Of course, thanks his crappy lungs, a cold is never just a cold in our house. Tuesday night he was sniffling, Wednesday he was doing a throat clearing cough. Thursday morning I was debating which ER we needed to go to- the close one or the one at the better hospital in case they admitted him. I ultimately decided to go for the better hospital, but since that's 35 miles away, I'd do a breathing treatment at home first, buying us enough time to get there and get in.

Thankfully, that breathing treatment cleared him right up. I was very surprised, but relieved. He woke up wheezing worse than I've ever heard him, which is saying something. I put in a call to the pediatrician and she added oral steroids to the inhaled steroids & pulmicort that we keep stocked at home. We kept him patched up, but when he developed a low fever on Friday night, we went in on Saturday. The pediatrician on call debated sending him for a chest x-ray to check for pneumonia but decided that despite his considerable wheeze, he was moving enough air to be safe. We did win ourselves an extra dose of oral steroids & an antibiotic, though.

As much as that sucked, it did highlight an interesting fact. This was the first antibiotic he's been on since December. She went back through his chart to see what has worked in the past, and sure enough. it's been 8 months since his last dose. That goes back to his constant ear infections before he got his tubes. My, how things change.

Of course, while this was going on, his eating tanked. I tried to just relax and recognize that even typical eaters don't want to eat when they're sick. Just go with the flow. The hardest part is that he will eat great at daycare, but not at home. We even had a few days of crying before I could get him into the high chair.

On particularly frustrating day, I tried to let him self-feed some yogurt (something he has only done once, but it was worth a try) without success. When it was time to take him to daycare, I packed up the uneaten yogurt and sent it with him. While I was there for the drop off, Katie pulled him into her lap and offered a bite of the yogurt. He immediately opened his mouth to take the bite, looked over at me and promptly clamped his mouth shut. Katie looked stunned. I tried not to cry.

Before I'd driven the 20 minutes to work, Katie called to let me know he'd eaten as soon as I left. I wasn't surprised. It's me. He doesn't want to eat for me. I have no idea what to do about it. We had this 2 week period where he just didn't fight, actually seemed to enjoy eating. That time has clearly ended. Being sick only exacerbated it.

Fortunately, the sickness has waned. His eating improved a bit, though he still won't let me feed him really at all. I've just been focusing on table food, which has it's ups and downs.

I did find some items at Whole Foods to experiment with. He seemed to like a chicken nugget without corn in the breading today. And the sweet potato fries were a big hit. I'm hoping that once this round of antibiotics is done with, he'll improve a bit more. (He's on Augmentin, which is notoriously hard on the stomach and certainly has caused him some digestive issues.)

The combination of fighting lung & feeding issues really had left me feeling a bit defeated. (I'm sure the lack of sleep wasn't helping build a positive disposition.) Prematurity just seemed to be getting the best of us.

Then two things happened. One was small, but brightened my whole Tuesday. Robbie had physical therapy at 11 that morning. I was working slightly earlier hours, so it happened that I was taking Robbie to daycare at the same time. His physical therapist, Jenny, pulled into the driveway at daycare maybe 20 seconds ahead of us.

While Jenny was gathering her stuff in the back of her van, I unloaded Robbie and we started to walk in. Robbie was holding my hand, walking towards the door merrily until he realized we were leaving Jenny behind. He started to whine and pull at my hand. I assured him that Jenny was coming to and to just go in the house. He wouldn't hear of it. I picked him up and carried him in. He was hysterical. As we walked in, both of his caregivers looked shocked. Why was he so upset?

I explained the situation and that Jenny would be in shortly. Robbie was still upset and since he has a cold, that meant not only did he have a stream of tears down his face, but now his nose was running like mad as well. I sat him down so I could get a tissue just as Jenny came in the door.

It was like magic. Instantly, there were no more tears. He actually started to giggle. He ran over to Jenny, staring up at her, clearly overjoyed that his friend was there. We all started chuckling. I casually asked Jenny if she remembered the days that he used to whine when he saw her come in the door. She said she certainly did. She knew he was thinking about all the tummy time to come.

"Yes, what a difference a year makes," I said.

As I drove to work that day, I really was reflecting on the difference in a year. This time last year, Robbie couldn't even roll over. Today I can barely keep up with chasing him. He hasn't had a formal evaluation yet, but Jenny is fairly certain he's going to graduate from PT with his next IFSP meeting on September 9. It's amazing.

Then a few days ago, I was offering some encouragement to a friend who is attempting to tube-wean her daughter. My friend is obviously nervous and skeptical. My heart went out to her. While Robbie isn't completely tube-weaned, I remember clearly the feelings I had before we started to truly work at it. I didn't think it would ever work.

Certainly, we have a long way to go, but when I told her of our experience from our tube-free weekend, I told her that in April, he wasn't drinking anything at all. But that first weekend in May when we went tube-free, he drank as much as 12 ounces one day. I mentioned how far he'd come in the last three months.

It hit me, then. THREE MONTHS. Three months ago, he would drink nothing. He could very, very slowly eat foods which essentially melted in his mouth. He was being tubed 3 times during waking hours.

Now he eats plenty of crunchy snack items and actually chews them. He loves hot dogs and french fries like most American kids. He even occasionally picks up a cup and drinks out of it. He did it this weekend, drinking maybe 2 oz of water two days in a row.

With the exception of a little bit of water for hydration when he was very sick last week, and a little puree out of desperation a few weeks ago, he hasn't been tubed during wake hours since April. That fact alone has changed our lives. We're now free to go out during the day without packing equipment and figuring out how to keep things cold or how to prevent tubing from disconnecting. It's incredibly freeing.

So yes, we are still at war with prematurity. Sometimes it even wins a round or two. It's easy to get lost in the day-to-day battles; how much did he eat today, how is his breathing, will he drink anything, he still isn't really talking. But when I stop and really step back and look around, I'm amazed by how far we've come. A little perspective is amazing. We've come a long way. This is a slow, dirty, tedious war, but we're in it to win it.


Thursday, August 19, 2010

Corn Woes

I freaking hate corn.
Seriously, it is in everything. Robbie still can't eat it. He does get some in small amounts, if it's towards the end of the ingredient list of something he will eat. But I really prefer things without it.

After we finally figured out that corn made him vomit more than a year and a half ago, I've been hoping he'd outgrow it. Several months ago, I tried adding Duocal to his food for extra calories and 9 days into it, he started vomiting blood again. Obviously he hasn't outgrown it.

When he would eat nothing, and then when he would only eat purees, corn was easy to avoid. But lately, he's had more interest in table food. Of course, those table food interests are limited. He still doesn't like anything with a wet texture. His diet isn't terribly unusual for an American toddler. I'd love for him to eat something with a little more nutrition in it, but at this point, I'm still just happy when he puts food in his mouth. So for now, he eats hot dogs, tater tots, pizza rolls, salmon or chicken nuggets, crackers and french fries.

Grocery shopping for me is complicated. I go from box to box, bag to bag, reading ingredients. Almost everything that is breaded contains corn meal, corn flour or corn starch. If it's sweetened, you can almost guarantee it's sweetened with high fructose corn syrup. It's maddening.

There are certainly things I can make at home. I can bread fish and chicken myself, for example. My culinary talents stop short of homemade pizza rolls. I might try my hand at homemade crackers one of these days. But mostly, I just keep looking for corn-free products.

It's frustrating because people, even those who should, don't take it seriously enough. Either they don't realize how rough corn is on Robbie's stomach or they don't realize how prevalent corn is. My dad is an amazing grandfather, truly. He loves Robbie so much and would do anything for him. Tuesday night, David had to work late, so my dad picked Robbie up from daycare. There was some confusion about getting into our house, so my dad took Robbie to his. He stopped and picked up a happy meal along the way. He called to tell me where they were and that he'd gotten Robbie some food. The problem? Chicken McNugget breading contains corn.

It's not just my dad, either. Friday night I called home and David informed me that Robbie was eating a Dorito. Doritos are corn chips. I am constantly feeling like the bad guy saying no, he can't have that.

This morning, Robbie seemed hungry and I wanted to give him something to hold him over until feeding therapy. I decided to try some cheerios. When I went to get some, I noticed David's box of chocolate cheerios and thought Robbie might like those. I had him a couple and he scarfs them down and asks for more. And more. And more. And more.

He probably ate 30 of them before I glanced at the box and realized they're made with corn flour. CURSES! I put the box away, trying to distract Robbie. He starts to cry because he wants them. Murphy's Law of childhood eating disorders: If your child will only eat one thing, it will be the one thing they shouldn't have.

I looked at the box of Honey Nut Cheerios and they're made with wheat flour, but contain corn starch. At least it wasn't the first ingredient, so I gave him a couple of those, hoping to at least minimize the damage. After a few of those, I managed to distract him with some corn-free crackers. I just have to hope the corn he ate doesn't make him sick enough to not eat again for a few days.

Now I guess I'll go try to find a corn-free knock-off version of chocolate Cheerios. Suggestions welcome.


Friday, August 6, 2010


I have a magic power.

Don't laugh, it's true. I noticed it in high school. Really, my best friend really brought it to my attention later, but by my late teens, I'd certainly noticed the trend. I can make anything leak. Anything.

At first I just thought it was the shit hole trailer I lived in as a teenager. I mean, any day that a wall didn't crumble down around me was a good one there. Being poor was an every day adventure made even more interesting by my unreachable slumlord. The bathroom floor started moving a little, I left messages. It started moving a lot, I left more messages. When it started squishing, I got pretty nervous. People would come over and ask if I'd noticed that there was a leak in my bathroom. No, I thought everyone's bathroom floor had a high tide.

In a few months the landlord came out, declared it a leak from the air conditioner and had it fixed along with the floor. A few weeks later, it started to squish again. A few more months of unreturned calls, they came and declared the same problem. This time the floor wasn't actually sagging, so they left the water stained linoleum in place. I put a rug down.

Eventually, my eighteen year old self would crawl under the trailer (which actually wasn't as horrifying as I had anticipated) took about 13 seconds to find the leaking pipe, wrap some duct tape around it and my floor never squished again. I was annoyed, but empowered.

One day before I left for work, I heard an odd pop followed by what sounded like river rushing nearby. A pipe had burst behind the closet in my bedroom. Several hysterical phone calls later, the water was turned off and I began mopping up gallons of water out of my floor. Bad luck to be sure, but I still thought my misfortune was in living in a shanty.

Several times in a year, my windshield wiper fluid tubing cracked and needed to be replaced. The reservoir which held the windshield fluid leaked, then the oil & antifreeze. I drove an old beater. It was to be expected, right?

Eventually I got a better job and with it a better car and place to live. And then that car's windshield wiper fluid tubing cracked. My landlord was infinitely better and quickly needed to send our ancient handy man out to fix leaking toilets and pipes; to install shiny new faucets. By now I knew I had a problem.

Then I got older, more educated and an even better job. I was ready to buy a home. No way I wanted to buy something with a damp basement. I was still single and though I'd learned a few simple home repairs along the way, I didn't want to need to do them. I had a house built. New meant dry, right?

Four months later, I went to my essentially empty basement to put something in storage and found a puddle in the floor. I called my builder in a tizzy. You have to fix it. They did. I got a pretty new downspout and some new spackle.

One night my best friend was over to visit. I wandered into the kitchen for a drink and I splashed. The sink was leaking. I yelled for her to grab some towels. She started laughing. "I'm so surprised your sink is leaking."

There have been at least a dozen leaking pipes, drains & faucets since then. Tonight I found 3 more (yes, three separate leaks) in my basement plumbing. I didn't even call for David to help. I grabbed the buckets and moved the endangered furniture. I thanked myself for marrying a handy guy.

After I'd minimized the damage, I collapsed in the chair and chuckled. I could hear my best friend's voice in my head, laughing again. I really am magic. Wherever I go, things leak.

As a parent, life is filled with leaks. Diapers, sippy cups, tears; they all leak. Of course, Robbie being my son, that just wasn't enough. Additionally, his stomach leaked through his diaphragm causing his reflux. After his G tube was placed, there were leaks out the sides of that, never mind the frequent accidental disconnections leading to milk-soaked clothes and crib.

Call me superstitious but when I find a recurring theme, I look for the lesson that life, the universe, that God is trying to teach me. I don't know for sure what that is.

For now, I just keep plugging holes and trying to minimize damage whenever I can. Sometimes I can prevent or minimize it. Often I do a lot of mopping. Sometimes I need help and call in reinforcements with buckets.

Maybe the lesson from the hovel of my youth was simply to prepare me for adulthood and parenthood. Things leak, it's okay. It's frustrating and tiring and sometimes you need help. The lesson from my new house was that sometimes new isn't better, just different. You can change your location, but not who you are. In the end, no matter where it is you end up, or how bad things look, they usually end up cleaner & brighter, you just have to work to get there.