August 23, 2012

Call Me Maybe

So, as I've written about before, every year we go on vacation with Travis's best friends and their families. A trip that originally began with three young seminarians has morphed into a 13 person entourage that requires at least 5 bedrooms, 3 cars, and a 2 hour trip to the grocery store.

Luckily, we've got this down to a science now that we have officially been outnumbered by the kids 7 to 6. For the first time ever, we returned to the same house we rented last year. The number of bedrooms needed and the budgets dictated by three clergy families doesn't leave a lot of options for rental homes in the Eastern United States. For a couple of different reasons, one of which was Sam's appointment at Levine's on Tuesday (more on that later), we decided to return to Ivanhoe, Virginia for vacation this year.

Ivanhoe, VA is not your typical vacation destination, I know. It's not close to any big attractions or things like beaches, but the house makes up for the isolation. It literally is located in the middle of a cow pasture, 20 minutes away from the closest store, but it has a pool and a swing set and a ton of room for 7 kids to run around.

Since we knew what to expect from the location, we planned ahead on activities to entertain the kiddos. We've had a carnival day, outdoor movie night, and destination picnic day. Still on tap is a joint birthday party for all the kids since we don't get to celebrate with one another because we live so far apart.

Today was "Call Me Maybe" video day.

Too much fun, my friends. Too much fun.

August 16, 2012

Being a Parent on a (Bad) Day

I'm having one of those days.

The kind that has included 5 time outs, 2 head butts (him, not me), 4 different occasions of sibling shoving (Luke to Sam, of course), one lunch of pureed pears dumped down the drain completely uneaten minus two bites that I fear ended up in his lungs instead of his belly, two outfit changes per person in the household, and one meltdown in the middle of the kitchen floor (mine, not theirs).

And it's only 3 o'clock!

We've had a string of rough days this past week with Luke. His hyperness levels seem to be through the roof. Even when I purposefully keep him away from all screens (confiscating the iPad, password locking the computer, putting tv remotes out of each) and try my best to wear him out, he still erupts in playfulness that crosses the line of being too rough. He's given me a ton of bruises trying to climb me, deliberately thrown things at his brother, pitched fits over almost every meal, and torn apart every room in the house during a meltdown. If this is a preview of what year 3 is going to be like, I am honestly scared.

Sam is all sweetness and light unless you are a little slow in making a bottle (which is SUCH a pain to do now with all the thickeners) or his brother has gotten a little too close or he needs help pooping or one of his 3 new teeth are bothering him. He's continuing to occasionally aspirate, even the thickened formula and purees. Meal times with him stress me out so bad, that even now, I'm tearing up out of frustration just thinking through our eating failures today.

When I came on duty this morning, Travis relayed the bad news that Luke had slept in til 8. Normally, sleeping in is a good thing, but these days, it signals that he won't be taking an afternoon nap. I know some 3 yr olds don't take naps anymore, but Luke just hasn't given it up yet. He normally plays so hard that he can always be counted take at least a 2 hour nap every afternoon. I know he's in the process of giving it up, but I've made the conscious decision to trade out a later bed time over giving up nap time. By the time 2 o'clock rolls around, Luke and I need a break from one another. And if that means he's still up at 8:45 or later, then so be it. It's totally worth it.

I tried to wear him out today with Play-doh and wrestling and indoor bicycle races, and while he willingly went into his room for nap time, he's popped out every 15 minutes since then. I'm not even afraid to tell you that he is currently in bed with the iPad, probably watching some ridiculous cartoon he found on Netflix. Judge away, Internet. I just don't care. When the decision comes down to giving him the iPad or yelling at him in out-of-control frustration, I figure the iPad is the better parenting choice.

I knew today had the potential to be rough, so I tried to prepare myself for it. I made sure I was properly caffeinated before I started dolling out time-outs. I was proactive in coming up with activities for Luke. I enjoyed Sam's awesomeness and smiles when Luke was occupied. I cleaned the house, knowing that a cleaner house automatically makes my blood pressure drop. I washed my sheets because I think nothing helps you get through a hard day better than knowing you get to sleep on clean sheets at the end of it. I got started on a packing list for our annual vacation with Travis' friends from seminary and their families. I gave Sam a bath so that every snuggle smells like Johnson and Johnson.

I did all that, and still, I ended up sitting on the kitchen floor crying after lunch because I just felt so overwhelmed.

I don't think this is an "overwhelmed because I have a special needs kid" kind of overwhelmed. I think this is just a garden variety "I have two kids under the age of 3" kind of overwhelmed. I don't know. Having a 1 yr old with DS and an almost 3 yr old who seems possessed some days is my normal. Maybe other mothers don't have kitchen floor meltdowns over a disastrous lunch time. Maybe every mother does. Either way, I don't think I'm alone in these feelings of: my kids are out of control...I don't recognize myself in the behavior I am exhibiting...I just want to leave it all behind.

My kids and their individual and combined issues have the ability to push my buttons like nothing or no one else in my life can. The woman yelling and shaking her fists in frustration is not me. The one crying on the kitchen floor isn't me either. It's not a me that I've ever seen before, at least. It's scary and embarrassing and sad that she's in there, just waiting to pop out and show herself to my kids. To the little people I helped create and whom I love like I didn't even know was possible. I hate that they've even seen her, let alone be well acquainted with her, like I fear they've gotten these past weeks. It's not who I want to be with my kids.

Travis and I recently started talking about me taking a few days to get away by myself. After this summer, it's something I think I desperately need. I've always thrived when I am getting a decent amount of alone time and it's just not something that is easily scheduled into my life right now. I struggle with irrational guilt about a variety of things, and alone time is often (in my head, and only in my head) judged as being selfish and something I should feel guilty about wanting. It gets equated to: if I want to spend time by myself, it means I don't want to spend time with my kids or my husband or my coworkers or my friends. I know that that isn't a  logical statement, but we all know that logical statements and emotional statements don't often match up. That is the statement my emotions say is true.

I worry that by going away, I'm being unfair to Travis, who is working 50+ hours a week and then coming home to be greeted by me shoving the kids at him. I worry that I'll be stressed about the kids the whole time away, so why bother leaving. I worry that 2 days won't be enough and that I'll have used up my "allotment of time away" (no such thing exists, just FYI) and won't have any other recourse if I reach this point again. I worry that I'll go away and come back feeling better, and all the stress will just be waiting at the door for me, like a heavy sweater I have to slip on the minute I walk inside.

Seeing the endless loop of garbage that is floating around in my head in black and white on this screen makes me acknowledge just how awful we can be to ourselves as mothers. This is that part about becoming a parent that I don't think any of those What to Expect books cover. No one told me to expect to beat myself up unmercilessly when my kids have a bad day.

See what I mean? It took me the entire 45 minutes of sitting here in front of this screen to get to the truth that my KIDS are having a bad day. Not me. I'm practically earning sainthood today in my efforts to not run screaming from this house. I need to learn to forgive that part of me that flips out over defiant behavior and unsuccessful feedings. Not to get all split personality analogy on you, but it would be nice if all the me's in my head were at least on the same team.

So, here's to Team Tori and a weekend away on the horizon.

August 1, 2012

Feeding Woes (and Ohs!)

Feeding has been an issue for Samuel...oh, since forever. We were never able to breastfeed and bottles were tough at the beginning. After getting his heart repaired, he gradually became strong enough to do quicker feedings with a lot more ending up in his mouth than on his bib. We were excited! Our first goal checked off on our IFSP. Go Sam!

It didn't take long for that excitement to die down and that (major) accomplishment to lose it's luster. His ability to suck down a bottle in under 10 minutes was not so impressive once we realized his great dislike for solid foods. Under the guidance of our speech therapist, we started introducing solids at about 5 months. No matter what you placed in his mouth, from cereal to apples to prunes, he made a horrible face and pushed it all right back out. Or he would tolerate it being in his mouth by storing it in his cheeks and letting it gradually drip out the corners of his mouth once he had liquefied whatever was in there.

After 6 months of getting no where, our speech therapist suggested we might want to bring in someone else because she had tried everything she knew to try. While I appreciated her honesty and humility, it was still kind of a gut punch to have someone give up on Sam. It made an already frustrating experience just that much more discouraging. 

It took a few weeks to find a new therapist who specialized in feeding and had an opening we could fit into our schedule. So, it was July 3rd before we had our first appointment with her. After introducing ourselves and laying out all the various spoons and equipment and food, I sat down to feed Sam. I put a little bit of applesauce on a spoon and asked him to open his mouth. And he did. And he took the food off the spoon, pushed it to the back of his mouth and swallowed. Then he smiled at the new therapist and leaned forward with his mouth open for a new bite.

I just about fell on the floor.

I kept saying over and over, "I promise he never does this. He's NEVER done this. I swear I'm not making it all up!"

Apparently, he just prefers tall, blonde speech therapists. Whatever, dude, we'll take it!

Since that day, he's had so many more good days than bad days when it comes to eating solid foods. It's seriously like a switch has been flipped and he now enjoys and knows what to do with the food we give him. He's even working on self-feeding with Mum-Mums and puffs. Wahoo!! Go Sam!

But (of course, there is a but...) during his next appointment with the therapist, he ate more pureed pears in one seating than ever before. By the end of his feeding, we noticed that he sounded a little congested and "wet" when he was breathing. This is a pretty big indicator of aspiration, so the therapist suggested we get it checked out. We knew to be watching for aspiration and our first therapist had been pretty diligent about giving me all the signs and symptoms of it. We even made sure to ask the doctors about it during our Pneumonia/Metapneumovirus hospital stay back in March. They assured us that the pneumonia was in the wrong place to be considered aspiration pneumonia, so we left it at that. However, hearing the congestion that had been absent for so long show up during a feeding was pretty suspicious and needed to be checked out. We had our pediatrician set us up for a swallow study this week.

Now, if you don't know what a swallow study is (see also: Me 2 weeks ago), they basically give you barium mixed in with various consistencies of liquids and solids that they when watch you swallow during a continuous x-ray. Samuel was given it in three different consistencies of liquids and one puree mixed to about stage 2 or 3. We were most worried about the puree, obviously, but he passed that portion of the test just fine. The surprising results were that he was very easily and silently aspirating the liquids in the thin (the same as formula mixed normally) and in the nectar consistencies. He was only able to swallow liquids mixed to a honey consistency without aspirating.

That's right. Honey. As in, go open your pantry and turn over a bottle of honey. See how thick that is? That thick. Anything less and he's getting it into his lungs.


So, yeah. That was an eye-opener. My already overloaded brain has now had to add a section for learning about thickeners and how best to thicken liquid without adding a ton of empty calories. And of course, this stuff costs almost as much as formula, which we all know is made by tiny elves in the Alps and can only be bought with bricks of gold.

Surprisingly, this new challenge hasn't upset me all that much. Sure, I'm frustrated and feel bad that it's been going on undetected, but this isn't BAD news per say. At least it's an easy fix. There was one point during the swallow study when they weren't sure he was doing okay with the honey and my brain just went into overdrive with the possible ramifications of that diagnosis. We are lucky, though, that we were immediately able to fix this problem with a simple stop at the pharmacy and a little trial and error on the mixing side of things.

We'll redo the study in a few months to see how's he doing. I've been assured that most of the time, children will outgrow this. Here's hoping!


A few weeks ago, Luke thought maybe he wanted a popsicle for dessert, but after two licks, changed his mind. So, Sam and I finished it for him. (Obviously, before I knew about the aspiration...)