Thursday, July 29, 2010

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.


Wednesday, July 21, 2010

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.


Wednesday, July 14, 2010


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.


Friday, July 9, 2010

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.


Wednesday, July 7, 2010

Not as easy as it looks

I love TV.

No, seriously, man. I love TV. I get this from my dad. One of the best cards I ever gave my dad had a picture of a man's feet and a child's feet propped up on an ottoman. The front read "You. Me. TV." and the inside said something like "we always had each other." or something cheesy. Sounds dumb and maybe even insulting, but my dad loved it. Probably because we certainly had more than TV in common, but we also had that. We watched cartoons together, then later a lot of the same shows. The year that I was at home with Robbie, my dad would come over on Fridays and we'd watch "our shows," have lunch and just hang out. Occasionally one of us will discover some great new show and call the other and insist we have to watch. Then we'll compare notes. One of us will miss an episode and have to go to the other's house to watch it on their DVR.

We love TV.

Of course, now having a small child, I have far less time for TV than I used to. Now I have a few hours between Robbie's bedtime and my own. And even then, the TV is often more background noise while I do chores than something I can sit and devote full attention to. So I often have backlogs of "less important" shows (or shows that do require full attention, waiting for a time when I can manage that) piling up until the summer or the month after sweeps when the television Gods take away my shows to remind me just how much I love them.

I tell you all this to explain why I had 35 hours of unwatched episodes of Oprah on my bedroom DVR. (Yes, I do have two DVRs. Each has 2 tuners. I told you. I LOVE TV.) (Don't give me lectures about why Oprah sucks. I know she's the enemy of the infertile. Believe me, I've spent more than my fair share of time yelling at her nonsense. But her story is nothing short of amazing, and frankly, she's pretty much the only talk show host with topics that regularly interest me. So I overlook her annoying tendency to repeat anything she says that she thinks sounds smart and just listen to her guests.)

As you may have gathered by the sweltering heat and 100% humidity outside, it's now summer. So there is little new programming on these days.The last week I've been working my way through all of these episodes of Oprah. One of the episodes was "Surviving the unthinkable." Most of this hour was devoted to the story of 4 brothers who had been adopted by some piece of shit lunatic who then starved them almost to death.

The story is horrifying. I honestly don't know that I have the words to explain how awful their story was. The oldest boy was 19 and he weighed 45 pounds. I honestly don't know how he was alive. I cried through a good portion of that show. Three of the four boys are on the show. They have been adopted by what seems to be a lovely family and it was nice to see them smile.

After the show was over, I was reflecting on the woman (I refuse to call her their mother.) who starved them. I mean, there are obvious questions. "Why?" being the biggest one. Why adopt them at all? Why abuse them? Why starve them? Why not just let them go. They truly would have been better off on the streets than locked in her home. They only survived because the oldest was able to sneak out and dig food from the trash and bring it back to the younger boys. Why was she able to get away with it? Why was she only sentenced for four years for such crimes? There were a lot of questions, but not a lot of answers.

I found myself thinking of the great irony, that she would take such pains to keep these boys from eating, when a few states away, I am begging mine to eat. What I wouldn't give to have been able to feed those boys and mine, too.

Friday was not a good day here. Now, Robbie's eating has been improving. By normal standards, it still sucks. But by ours, it's great. He will take tiny bites of a hot dog or chicken nugget. You have to cut them very small and hand them to him one at a time. He carefully chews and swallows, signs for "more" and then you may give him another bite. You can't give him two or he gets upset or drops both on the floor. One at a time, please. No problem. He's still loving his cheez-its. He hit a new record tonight consuming 9 of them in about 40 minutes. That's impressive in our world.

But there are still bad days. Robbie had feeding therapy on Thursday. At the end of the session, he threw a piece of food. That's not something he does a lot of, but it does happen. Usually when he's done, he just hands you back whatever he doesn't want. But if he gets upset, he might pitch something. I wasn't present for the session (it was at daycare) so I'm assuming that she probably didn't understand his cues of being done and pitched a piece of food. She made him get up and using her hand over his, made him pick it up. By both her account and daycare's, that went very, very badly. He was hysterical. And then he didn't eat for 2 days. He wouldn't eat his afternoon snack and only picked at his dinner on Thursday night, then refused everything except goldfish crackers at daycare on Friday.

By Friday night, he was very hungry. You could definitely tell. He was extremely cranky. I'd worked a day shift (a coworker traded me shifts 4 of 5 days last week) so I was making dinner and David was mowing the lawn when Robbie lost it. He wanted to go outside and when I wouldn't take him, he melted down. Now, he's 2, so tantrums are not an uncommon event at all. For the most part, you ignore them and he's over it in about 30 seconds. But this was clearly different. It wasn't just that he was angry. He was inconsolable. I couldn't get him calmed down at all. I gave him a cracker hoping he'd realize that he could eat something and he'd feel better, but he was too upset to even try. I tried to hold him but he was flailing and then I realized his diaper needed changing, so I took him to his room to be changed. At this point I was starting to get overwhelmed, too. It hit me that all of this is because he just wouldn't eat. And if he would eat, he would feel better and I would feel better and we wouldn't have all this sorry and fussing and bad therapy sessions and trying to get daycare to know when to push and when not to and trouble finding a new daycare and all of it. IF HE WOULD JUST EAT.

And then I was angry, too. Angry with Robbie. I even said "WHY WON'T YOU JUST EAT?" as I was changing his diaper. He just continued crying. When he was cleaned up, I put him to his feet and told him to go play. He cried and looked at me like he didn't understand. He was crying and I wasn't fixing it. I washed up and calmly fixed a cup of milk. Maybe if I could get him to drink something, it would sate his hunger enough to get him to stop crying.

I sat down and pulled him into my lap and offered him a sip. He paused enough to take the drink (surprising me) but when he got a taste of it in his mouth, he was hysterical again. I don't know if he thought it was going to be water or what, exactly, but he definitely didn't want the milk.

At this point I was resolved to just sit. If he wanted my lap, he could have it, but I had nothing else to give. The solution was to eat or drink and he wouldn't do it. I thought about tubing him but something inside me said no. No. The solution to fix how poorly he was feeling was not to cry until Mommy tubed him. The solution when your stomach is empty is to EAT SOMETHING. I was still angry.

At this point, my husband came in and looked confused and worried. I explained that he was so hungry that he was hysterical, but he wouldn't eat. David asked if he should make a chicken nugget. I said he was welcome to try. So he did. In the mean time I got Robbie up and put him in his high chair. Robbie get quiet for the first time in about 40 minutes. I cut up the warmed nugget and offered him a piece.

He ate. I handed him one piece at a time for a while until David took over and I was able to resume cooking our dinner. All in all, he ate half of a small chicken nugget and a few crumbs of cheese. But it was enough to make him feel better. The rest of the weekend, he ate fairly well by Robbie standards.

I don't know if he learned anything on Friday. I relearned that sometimes I'm not as strong or patient as I should be as a mother. It's not a lesson I wanted to relearn, but it's the brutal truth of living with a child who will not eat. Sometimes it's harder than others. Sometimes you're so frustrated and angry that you honestly give up. Maybe it's giving up for 40 minutes of a meltdown, maybe it's giving up for a week or a month or a year and just relying on the tube. Sometimes it's easier not to feed them because the fighting is just so hard.

And then I started thinking about that woman again. I thought about how hard it was on Friday to not feed my kid. He's screaming and crying and starving and everything in my being said to just put it in the tube. He's hungry, feed him.

You know those boys had to scream and cry. On Friday I could hear Robbie's stomach growling and I swear, it made my soul growl, too. This woman had to see and hear those boys starving and yet she locked the refrigerator to keep them out of it. That's some kind of twisted dedication there. I'm here to tell you, starving your child is harder than it looks.

I don't have any witty wrap up, or clever closing. It was just one of those moments in life where I found myself standing still and marveling at the twisted nature of humans. When I was infertile, I marveled at the ease with which crackheads & meth addicts seemed to conceive and birth children while I could point out dozens of emotionally & financially stable families who'd love to take in one of those babies or make one of their own. This weekend, the meth-head mother was this lowlife who spent such effort starving her child out of spite while I implored mine to eat.

Some days it just taxes my soul. Of course, there are better days, and I cling to them. There are days where he eats 9 crackers in 40 minutes, or days when he acquiesces to eating chocolate for the first time. Or days that he gets so excited about drinking some water that he soaks himself, me and our bed, and is so pleased with his cup that he won't give it up for a refill so we just give him another. Those are the days that make deposits into my soul bank. Thank God for those days.

And of course, thank God for TV, too. Sometimes it's the stories of atrocities done to helpless New Jersey boys that make me count my blessings and realize maybe I'm not doing so bad after all. And sometimes it's a comedian who lets me know I'm not alone.

I couldn't find anything about Louis C.K. having a failure to thrive kid, but he sure has the parenting woes nailed.  (language not safe for work.)


Thursday, July 1, 2010

We're alive

I swear, we're alive.

Before I got married I worked midnights for a few years. And really, for at least the last 10 years, I've worked primarily second shift and loved it. I like it. I'm a night owl. I hate mornings. Evenings at work are quieter, less drama filled. Doesn't matter what the job is, it just feels better to me.

My husband is a day shift guy, but still a night owl. Even Robbie seems to have come by it naturally. He was one of those infants who regularly woke at 1am and was up until at least dawn. It took close to a year to adjust him to going to bed before midnight. When we got him to go to bed at 9 and sleep until 8, it was perfect.

When I found out that I was going back to 2nd shift, I was upset. Not at the sleep change- honestly, I sleep more now. Instead of needing to be up an hour before Robbie to get ready for work, I can sleep until he gets up.

But man, I must have gotten old because I'm having the hardest time adjusting. I swear I lost a week somewhere. And don't even think of asking me what day it is.

Finally this Monday I felt like I could feel a routine forming. Robbie started to sleep a little better (he had a really hard time, too) He'd get up around 8:30, we'd snuggle until he could eat. Breakfast. More playtime, a little snuggle. Then I'd take a shower while he watched cartoons. While I got ready, we'd talk. Well, mostly I'd talk.. but, he listens well. Pack my lunch and drop him at daycare, then rush to work. When I got home, I'd sneak in to kiss him and watch him sleep a bit. Then we'd do it again.

Monday afternoon a coworker asked if I'd trade the rest of her day shifts for the week. I jumped at the chance to have dinner with my family. I was back to my old day shift. Man, did it throw me for a loop again. Up earlier, remembering to pack a lunch the night before, morning traffic. Not to mention we all have a cold, so I'm not sleeping great anyway. I'm tired!

So lots of things have gone neglected. One of which has been my blog. I'm sorry!

I've really appreciated the emails & messages wondering where I was. It's nice to be missed. I'll be back to my new normal shift starting next week. Hopefully I'll adjust and be back to fully functional soon.

In the mean time, I have to say that good things are happening at home with Robbie. He's eating more and more table food. Tonight he actually ate an entire chicken nugget and asked for more. Towards the end I think he was full but didn't want to stop eating so kept wanting more, essentially licking it, then wanting more.

And in a really amazing happening, on Monday, Robbie came in from playing at daycare, picked up another kid's sippy cup and drank! They gave him his cup and he just kept drinking. He wouldn't give up the cup when David came to get him or when they got home. He wouldn't even let David refill it, so he just made him a 2nd cup and gave it to him. He then drank from that one without ever giving up the first. When I got home, I found him soaking wet, banging two sippy cups together and intermittently sipping.

I have no idea how much he drank. Probably a couple of ounces. We didn't do anything to encourage or discourage. Just let him do what he wanted to do. We all had a good time. Yesterday he didn't have much interest, but tonight he took a few sips of yogurt juice with his chicken nugget at dinner. It's definitely progress.

I'd love for him to start drinking even small amounts and love even more for him to start eating something resembling a normal amount of food. I'm currently seeking a new daycare for him for when he ages out of his current daycare (in September. They're keeping him until 2 adjusted.) but having a LOT of trouble. I've made at least 20 calls with no success. I only got one call back and that was from a daycare that seemed fairly hesitant to deal with both our odd schedule and his feeding issues. She said she'd talk to the teacher and call me back, but I'm not holding my breath.

Being able to leave out the part where he still has to be spoon-fed and talked into it would make my calls a bit easier.

In summary:
Lots of good things
Lots of changes.
I'm sorry!
I'm tired.