Leaks

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.

--Trish

Hope is hard

It wasn't a one time thing. After eating the whole dog that first night, the next night, he ate a whole one again and then another quarter. On Friday night he ate 1 1/2. I cried.

It's not just the hot dogs, either. His daytime eating is just so much better. We skip breakfast and I swear it just makes his whole day better. Before the big change, he was averaging 6 or 7 ounces of purees each day, maybe 8. A really, really astoundingly good day, we might get 10 into him, but that was very unusual. And that was in 3, sometimes 4, meals. Now he's eating 10 oz or more in two meals. And it's not just the volume, it's the pleasure.

On Saturday, I was feeding him as he watched cartoons (still pretty much the only way to get him to eat). As I offered a bit, he glanced over at me. Historically, that has almost always resulted in him smacking at the spoon, so I instinctively withdrew that spoon. Only he didn't smack, he leaned forward to get the spoon, effectively chasing the bite. I started giggling. He looked a little silly, but really, it was just joy bubbling up out of me. HE CHASED THE BITE. He wanted the food and actively sought it out.

On Monday when I dropped him off at daycare, we talked about the change in him. They're just as pleasantly surprised at me. It really is just amazing.

Of course, with all of these positive changes, my hopes for the future have soared. I dropped his night time calories, letting him make up for it during the day. We're in the process of trying to find a new daycare (he's aging out of the one he's in now) and I'm telling the new places we're looking all about our current schedule & path, assuming it is permanent.

But then his eating started to wane a little. Sunday night he ate a chicken nugget and 1/4 of a hot dog. Monday, only the 1/4 of a hot dog. Last night, my dad babysat because David had a meeting and he ate less than 1/2. My anxiety sky-rocketed. There were other things going on as well, but panic set in. What if he stops? What if he backslides? What if he's sick of hot dogs but won't eat anything else? What if we fail again?

I sent a panicked email to Becky begging her to talk me down. Fortunately through writing out what was going on, I was able to work through some of it mentally. It would be okay. It had to be. Right?

Becky wrote back and reassured me. I tried to take slow, deep breaths.

Tonight, he did better. He ate very well all day again, then ate 3/4 of a hot dog. These are bigger than average hot dogs, so that's pretty close to the whole hot dog he ate last week. I felt myself breathe again. At bedtime, David called me at work so I could sing to Robbie and told me that he was cranky. He thought Robbie was hungry, but it was bedtime. I told him to give the kid a cracker. I'd never been so happy to hear that my son was in a bad mood in my life. (And yes, the cracker helped.)

If there's been a recurring them in my life for the last few years, it's how delicate hope is. It's so necessary to life, to give us a reason to move forward, to fight the good fight. It's also terrifying because it leaves us so open to destruction. This battle towards normal eating frequently leaves me being bruised & bleeding, damaged by disappointed, but still struggling forward. Hope makes me weak & keeps me strong. Hope is hard. Thank God it's worth it.

--Trish

Hot Diggity Dog

Robbie ate a whole hot dog tonight.

About a week and a half ago, I decided we had to be done with the constant food wars. I dreaded every single meal. I'm sure he did, too. Every morning it would start. Get him in his high chair, try to find something to distract him, all but beg him to eat (I would have begged, if that worked.) He'd flail and fling and hit the spoon and spray me and the house with food. Almost every day of the last 2 years have been some version of that.

At night, though, he was more and more interested in table food. He'd eat bread, crackers and some meats. So David and I had a discussion about not pushing any more. If we needed to add back some of his night time calories, we would, but that I really felt like he was at a crossroads where he wanted to do it his way. Some of it was his age, some the resolving of his reflux. (Really, he rarely vomits now. It's a whole new world at our house.) But not matter what the cause, we were all happier when he was in control.

What that has meant is that he really does not eat breakfast. Maybe a cracker or two. Instead, he's been eating lunch with me when I eat before work. Sometimes he has a pizza roll, or some crackers. Sometimes I'll spoon feed him some baby food if he'll agree to eat it. That's usually around 11am. He gets to daycare at 1 and eats again. Going pretty well. After he gets up from a nap, more baby food. Then at dinner, he eats at the table with us.

Mostly he will eat a cut up hot dog or chicken nugget. We always give him whatever we're eating, but it almost always goes immediately off his tray (unless it's bread.) Late last week he went from averaging 1/4 of a hot dog to closer to 1/2. I was thrilled.

This week, daycare is closed for three days. And he couldn't go Monday either because he'd had a fever on Sunday (random virus, I guess. He's fine now.) So he's been home with either both of us or David alone. Now, he eats baby food better at daycare than he does at home and table food better at home than at daycare. So I was a little stressed that he wouldn't eat well enough at home. But I had a chat with myself and said it didn't matter. He's healthy and strong and he'd either figure out he needed to eat or he'd be hungry until he got back to daycare.

Apparently he figured out he was hungry.
We haven't pushed at all. He's had crackers for "breakfast" and then a decent brunch each day w/o much fighting. Maybe a whine at the beginning, but then he'd settle back in. This morning he wowed me by eating nearly 6oz of purees w/o a fight. He took a good nap, woke up and ate another 4oz for David.

At dinner time, he wanted some crackers, so David let him have 2 before dinner. He then warmed 1/2 a hot dog and cut it up as usual. David said that after he finished that, Robbie was pretty antsy, so David tried to get him out of the chair. Robbie shooed his hands away. We've learned that's an indication that he's not done yet. David offered him some table food, all of which was immediately rejected. He offered more crackers, again rejected. David finally gave up and got him out of the chair despite his protests. Within a few minutes, Robbie was pulling at David's pant leg and whining & crying. Nothing seemed to make him happy. Finally he asked if he wanted more hot dog. Robbie signed "more."

David wasn't really convinced, but he went and made another 1/2 hot dog anyway and cut it up. Robbie then proceeded to eat the entire 2nd half! And after that, he ate 4 more crackers!

I was at work when David called, but I got a very giddy voicemail asking me to call home because Robbie needed to tell me about dinner. I couldn't believe it when David told me story!

I honestly was sitting at work just crying happy tears. What an amazing feat. To consume a whole hot dog at one seating (I don't count dad's misunderstanding as "up.") but today he consumed 600 calories. He needs about 900 total. If he were drinking 16oz of milk like a typical kid, he'd have hit his calorie goal for today. My mind is blown.

I know this shouldn't be expected every day. I have learned all too well that feeding difficulties aren't a steadily improving spectrum. Tomorrow could be the worst yet, but today July 21, 2010, was a good day. A very, very good day indeed.

--Trish

Done

I broke up with our OT today. The longer I thought about the last report, combined with how incredibly frustrated I've been lately, I decided it was time.

There have been lots of little things the last few months. Increasingly negative reports, poor communication outside of those reports, a lack of listening to my concerns, focusing on things that I thought were unnecessary. There was a particularly bad session in mid-May that I came fairly close to cursing and throwing her out of my house. She was scolding Robbie for not cooperating with a game she wanted him to play and not praising him at all when he got it right.

She wanted him to go through a tunnel with a blow up mattress in it, picking up some rings along the way and then climb over the pillow part of the mattress to put the rings on a stick. He would go through the tunnel, sometimes picking up a ring along way, some not. At the end of the tunnel, he would go out the side instead of over the mattress. Apparently this upset her and she was downright pissy with him about it. She kept loudly saying "NO, ROBBIE!" and was pretty physically aggressive with getting him to go over the pillow instead of around it.

A younger me would have cussed and thrown her out of the house. My inner mama bear was ready to attack. Instead, I told myself to chill out and sleep on it before deciding if she was really being too harsh with him, or if I was just being overprotective. By the next morning I had decided it was a little of both. I spoke w/daycare about her demeanor in the previous weeks and they assured me she'd been fine. I tried to put it off to a bad day and go forward. But I have definitely been hypersensitive to everything she has said and done since then. I think that's a big reason Thursday report upset me so much. On its own, it was just annoying, but combined with everything that had gone on the last several months, I just couldn't let it go.

On Saturday, Robbie had his 2 year check-up at the pediatrician. It went exceedingly well. He weighed 24.5 pounds, measured at 32 inches. Still low on the growth charts, but on them, which pleased the doctor. She doesn't think he'll need growth hormone when he's 3. She was very happy with his milestones. The only thing we had to answer no to was if he is eating with utensils yet. Given that he still doesn't eat much at all, I don't feel too badly about that. She actually even thought his speech was okay. I told her that he had 27 words and she asked why he was in speech therapy.

She was happy to hear about his progress with solids. These days he will eat tiny pieces of hot dog or chicken nugget. He loves most bread. He'll knock you down to get to crackers. His volume of intake is low, but his enjoyment of them is high and there is nothing better than seeing your failure-to-thrive kid gobble food down. On Sunday evening, he grabbed a piece of hot dog that I offered him and threw it in his mouth and smiled. I started crying happy tears. It may be just a hot dog, but it's a miracle in our house. She wasn't surprised that he's still resisting liquids.

Then we talked about therapy. I told her that I was frustrated and just sick of it. Four therapy sessions per week was exhausting to try to schedule and manage. And then I get a report that calls him whiny, and I want to split heads. She was pretty annoyed about the report (and really, if anyone should think he's a brat, it's the doctor's office. He starts screaming as soon as he sees the exam table and doesn't stop until we leave.) but said that my frustrating is "very healthy." I looked at her a little funny when she said that. I was kind of expecting a lecture about doing what is best for Robbie not it what is easiest for me. (She's done it before. She's not a word mincer.) She explained that the fact that I was tired of them showed how well Robbie was doing. She expects him to be completely done with therapy by the time he's 3.

I know she doesn't have a crystal ball, but that was still a relief to hear. She's made a lot of predictions over the years we've been with her and she's always been right. I hope she is this time. If he still needs services at 3, it's then through the school district and that adds a whole new layer of complication to our lives. She did say that he may or may not still have his tube at 3. But that if he does, she "won't be upset."

She shared a story of one of her most stubborn cases. He was one of a set of triplets, the other 2 being girls. The girls did well in the NICU while he struggled similarly to Robbie. She said that he just would not eat. They finally got his tube out just before he started kindergarten. She must have said 4 times, "I promise, he WILL eat."

He got the last of his vaccinations and she said she doesn't need to see us again for a year. I almost fell over.

On Monday, we had a GI check-up and she was just as positive as our pediatrician. She also shared a story about a hard case. A boy who took to eating very slowly but with interest, but when it came to liquids, it still took a long time. He also got his tube out just in time for kindergarten. Go figure.

She was also very happy with his growth. We discussed a few options for encouraging eating while keeping up nutrition and yet again, I left with the basic concept that I had it under control. We don't have to go back for 4 months. We also discussed OT and feeding. She also expressed that being annoyed with therapy is par for course. We talked about some of the focus of our OT and my feelings on it. She agreed with me. Basically that sensory issues are at play, but they are not the primary reason for his feeding difficulties. She was thrilled to hear that he tries different textures, even if not all of them.

So with those words ringing in my ears, and after thinking about it at length, today that I'd send our now former OT an e-mail and let her go. I told her how much I appreciated all she'd done for us, but that we were ready for a change. I explained that the last few months, she'd seemed frustrated and negative towards Robbie and I was also feeling frustrated and negative about things, so it was time to move on. I sent it this morning and haven't heard anything from her.

I can't say that I don't feel some sadness. She was a Godsend to us Robbie's first year at home. There were times when she stayed after a session just to let me talk a bit, or eat something. She was the only other adult I saw outside of my husband most of the time. But in the end, Robbie's needs come above either of our feelings. I believe that she had ceased to be effective because of the narrowed focus she had and because of what was feeling more and more like a battle of wills between the adults in Robbie's life. So it's done.

Next step, find a new one. The fun never ends.

--Trish

I'm sure he thinks you're great too.

Robbie's therapy reports are broken into sections. The top section is for the observations of his caregivers since the last session.

Today's OT report reads:

S: Julie + Katie (caregivers) report Robbie has been whiney lately. (with the symbol for "increased" after it.) 



Man, I just love therapy reports. Just makes me feel all warm and fuzzy inside.




--Trish