Saturday, March 27, 2010

'It's ultimately up to you'

Has a parent ever heard a more assanine statement when it comes to their child's health? I mean, I know that it is true, but there are times when you just want a doctor to tell you what to do and what is the best thing for your child. I'm sick of political correctness and fear of lawsuits, although I certainly feel for all medical professionals. A feeding tube has been recommended for James and we've been battling the decision for a couple of months now. The most difficult part is that the decision is...'ultimately up to us'. Boo. Oddly enough, that's sort of always been a problem with James. He skates right on the line between not sick enough for real proactive interventions (except for minor ones) but not healthy enough for us to go about our lives. His weight gain is okay as long as nothing else interferes with it. Um...that's pretty tough with toddlers. Everything interferes with, well, everything. :) Lately he has been nice and healthy, but the weather has been nice so we have been running around outside all day long. Great for sensory, not great for weight gain. Aargh. We'll see.

Friday, March 26, 2010

dorky enjoyments

When you live in the middle of nowhere (as my friend Carly pointed out when she tried looking up our house on Google Earth and couldn't find anything but grass and trees), you spend many days without seeing...other people. I see Tom morning and night, I see James all day and all night, and sometimes that's it...for a while. As most people with kids know, talking on the phone while they are awake is sometimes more trouble than it's worth (how do they know when we're multi-tasking??). And since I have to hold James while he's sleeping, I can only text then (I'm a good texter--just ask Tessa of - one of my absolute fav blogs written by one of my absolute fav cousin in laws/Jame's Godmother, wife of one of my absolute fav cousins who is fighting for our freedom in the Navy, AND who is having a 'giveaway' on her blog prompting me to plug her to win something cool---but honestly, read her blog, it's amazing).

So my dorky enjoyments are all the things people make fun of. I text, which is probably annoying to others; I love facebook, I don't care how many people make fun of it; I read select blogs, I read romance novels on my Kindle, and I love Twilight and New Moon, even though the movies are not as good as the books. I watch them over and over again anyway. See, super dorky and I love every second of it!

Friday, March 19, 2010

Tricks of the trade

I've learned so many tricks to help with eating problems, oral aversions, oral defensiveness (picky eater doesn't begin to describe it). I mean, the only thing the kid will regularly put in his mouth is water or ice. In fact, ice is one of the best words he says (unless he really means ass, but I think it's ice). Anyway, I thought I would share/document some of the ideas that I have either come up with myself or stolen from someone else. If this can help anyone get some calories in their kid or get a child interested in food, I'd be very very happy. I'll probably have to add to this at some point, cause I'll forget something crucial, but it's a start.

-popsicles, popsicles, popsicles. I've made lots of different kinds (most recent with coconut milk, yogurt, and frozen berries). His favorite is a water popsicle, of course. One thing that a therapist will tell you is to try to get your child to chew on toys (that's how we all learned to eat). But as kids get older, they're just not as into it. So I made tiny juice popsicles with all the therapy toys (chewy tubes, bumpy spoons, Nuk brushes, etc). I cut the corner off a plastic bag, popped the toy in, poured a little juice in it, then stuffed it into either a popsicle mold or ice cube tray. It was great. The popsicle didn't last too long, and before he knew it, James was sucking on a chewy tube. Sneaky.

-ice cubes, of course. On our therapist's suggestion, we would put juice ice cubes in water, and then as they slowly melted, James would end up drinking some juice/water with flavor. Eventually we added more and more juice and now he will drink juice (although he has unfortunately learned the word water. bummer). What I have not been able to get him to do is drink his formula from anything but a bottle. As he gets older, it is important to stop using the bottle so he has the correct swallow movements, which are different when you drink from a straw or cup. I don't know why it took me so long to figure this one out, but I started making Pediasure ice cubes and putting them in water. So far so good.

-licorice. Not the most normal thing to give to a toddler, but hear me out. James still has no interest in actually chewing on a toy. He wants food...sort of. So you take Red Vines licorice (very important--no substitutes) and you leave the package open for about 2 days. Stale licorice is basically impossible to bite through (although you should keep an eye on them), but it tastes good and kids tend to gnaw on it.

-back to ice cubes. James hates a yogurt type texture. But he loves ice cubes so much, that if you put an ice cube in some yogurt, he will pick it up, get his hands messy, and lick the ice cube, getting lots of yogurt in his mouth.

-sugar. He also loves sugar. Not as much as ice cubes, but still. Sprinkle colored sugar next to yogurt and get his hands messy, and before you know it, he's pinching up some sugar with yogurt on his hands. Great.

-kit kat. Chocolate is a big hit, and kit kats are great because they easily break into a stick, and then he can place it between his molars.

-straw in a bottle. Okay, this didn't actually work, but I still think it was a valiant effort and might have worked if James didn't have such good eyesight. I took one of his normal bottles, cut a hole in the nipple, and stuck a soft, clear straw through it in hopes that he would start to suck the straw at bottle time. He saw it and threw a fit. But I still think it could work...somehow.

-hide stuff in water. He loves water so much, I can mix his fish oil and melatonin in a little water and he drinks it right down. There's no way I'd be able to dose him with medicine otherwise.

-ignore. Sometimes I give James a spoon with something (like yogurt, mashed potatoes, etc) on it and then turn my back and pretend not to watch. Can work like a charm.

-learn by example. Well, I eat all the time. All the time. And I'm with James all the time. All. The. Time. I figure he must be picking up something that I've been doing, but we'll see.

Glass half full...

...of wine, I hope.

I complain on my blog a lot, but I do hope it's funny complaining. It's meant to be. I'm a firm believer that if you can't laugh about something, you're not going to make it. There are ways to help though. Nights tend to suck for me. Even if they end up being okay, they're full of the unknown (haunted house theory), so they are stressful. Sometimes during an early early early morning feeding, I sort of just wish it were morning so the night was over. BUT, what marks the end of my day is rocking James to sleep after his lavender bath, brushing, deep pressure massage, and bottle (we should all be so lucky), and I have a lovely all the way full glass of wine. Sometimes we're out of wine and I have tea, but it's seriously not the same. I love my wine.

Monday, March 15, 2010

drugs :)

Okay, before I go into the latest thing we're trying, I need to properly express our sleeping arrrangements for the past 21 months.

Well, in short, hit or miss. James has never slept through the night, but he used to sleep for a few hours at a time in his own bed. At about 9 months, all hell broke loose and from that time until he was almost a year, I could never ever put him down when he was sleeping. It sucked. We went back to swaddling, started the brushing protocol, and then I could put him down sometimes for a few hours. It takes about an hour to rock him to sleep, feed him, and get him put down on a normal and good night. Our methods have varied over the past 10 months or so, and we now have a pretty good nighttime routine that works 55% of the time. When James wakes up crying, you have to understand that it is not whiney crying, or sniffling, or talking. He wakes up with bloodcurdling screams and cries. It's sort of like spending my evenings in a haunted house waiting for someone to jump out at me and, well, scream. I go through phases where I can't even fall asleep at night until he wakes up crying and ends up flaked out across my stomach (honestly, sometimes it's like I'm still pregnant).

So. I've tried everything, I've taken criticism and swallowed it, I've cried, I've thought about driving out my driveway...alone (but only briefly and maybe we'll call it fantasizing...). I started researching Melatonin, oddly enough from something our friend and wonderful doggie vet was talking about. The first research I did was not vey supportive until I started googling Melatonin with Sensory Processing Disorder. Bingo. It's everywhere and seemingly the results are positive. Certainly nothing negative in very low doses. In fact, some studies have shown that sensory kids and children with autism may not produce enough melatonin in their brains, therefore using some as a supplement could be beneficial. I was very very wary, because I don't like to medicate, and I'm so not into any side effects. But I got the dosage from our pediatrician, went to the healthfood store, and gave it a whirl. I can say the the very fact that I am trying this means that I truly can't take it anymore. I've been at the end of my rope for a really, really, .....really long time. I'm basically hanging on floss, which is surprisingly strong. Anyway, I gave him 1/2 of even what the doctor recommended just to try it and all I can say is that he's been sleeping in his own bed for the past 1 1/2 hours and I haven't put him down in over a week (sometimes I just go to bed with him cause I'm tired and I'm not mentally up for the yelling). We'll see how it works...I try to keep low expectations, and obviously he still has to wake up and eat, but some quiet and anxiety free evening would be pretty amazing!

But I sort of post all this cause I read so much online of random people criticizing others for trying melatonin as a sleep aid. BTW, it helps to normalize sleep patterns. Look, I'm sure it could be misused, but evidently if you give your child too much, it just makes them hyper, so who would do that? And obviously you should consult your doctor and it shouldn't be used for kids misbehaving...only for serious issues. My point is that you don't know what sort of things another person is going through and not all sleep problems are solved by rice cereal and shutting the door on kids crying. Going three months with no sleep with an infant is tough, but not in the grand scheme of things. And I know there are parents that go years and years with kids with disabilities and don't sleep. Well, I fall in the middle and I know it will get better someday, but it's not gettin better yet and it's hard. So if I can safely find a little bit of help, I'll take it and enjoy it!

Wednesday, March 3, 2010


I have to hold James for naptime. Ridiculous, I know. On a usual day, I hold him while he sleeps for 2 hours in the morning and 2 hours at night. There is no way around this, trust me. No naps means no eating, along with extensive crying, screaming, and crankiness. And no naps happen if I don't hold him (naps in the car are very short, but okay for one day--after that it's rough. Plus-still no eating.). Of course it is wonderful to snuggle him; sometimes I nap (rarely); sometimes I watch American Idol/So You Think You Can Dance/etc on the dvr; sometimes I read; I frequently text. What I do not do is get anything done around the house.
So I've learned, mostly the hard way, that I have to be more organized. I make a menu each week so I only go to the grocery store once and I don't have a lot of waste and so I can prepare what we are having ahead of time when possible. I totally love my routine now and would never go back. It helps me use all the leftovers and make sure we don't have the same thing over and over (although we frequently do...I'm not super creative). Today I am poaching a whole chicken a la Julia Child and will then make chicken soup and several of the most amazing chicken pot pies (in theory) for the freezer. Oh, did I mention we raised the chicken? And no, Dimple didn't kill it for us. I feel so domestic! My friend Shannon always asks me to send me my menu (I think she just wants to have ammunition to make fun of me, but it's always So here is this week:
Sunday: baked cod, salad
Monday: chicken breast, whipped peas, salad
Tuesday: venison, salad, stuffing
Wednesday: poached chicken, rice, veggies
Thursday: chicken soup
Friday: chicken salad (hey, I'm trying to see if I can make all this with one big chicken!)
Saturday: pot pie, salad
Sunday: venison, salad, baked potato
Monday: any leftovers with veggies

This week is pretty boring cause I'm being cheap. Luckily Tom doesn't mind if we repeat a lot. It was fun to go to the store and buy no meat at all. And on an amazing note---James ate several bites of whipped peas all by himself. It was incredible and it wasn't until several hours later that we ended up at the ER in an unrelated incident. I just hope James realizes it...

Tuesday, March 2, 2010

Most of the time I'm pretty rational and fairly strong, but sometimes I'm not so I cry.

All the people at the Fauquier Emergency Room are really nice. Even the billing people.