Monday, March 26, 2012

The Funny Farm

Life on the farm is, well, still funny. And busy. And crazy. And wild. And funny (I said that, right?). On top of my decision to make all the food in our house myself, including bread (seriously, people used to have cooks just for this),

we continue raising cattle in our spare time.

YouTube Video

Because spring has sprung in full force out here, we are getting ready for some babies! Two have calved already and some number known to Tom are on the way (basically, I'm just around for show). But because of this:

Um, okay, that's a coyote in the middle. It seemed a lot closer. But hey, that's close enough!

Anyway, because of that, we got one of these:

This is Sonny. You can see his arrival here:

He's ridiculously cute, possibly drives a cart, and I'm taking offers for whoever wants to try sitting on him first. I think he'll be totally fine...if you can steer him...which is questionable. But really, he's not that tall anyway. I've always wanted a donkey, and a goat. Basically my life is complete.

In other news, this past week, 24 Crows in Flint Hill had a Dominion Star burger on their menu! This little cafe/art gallery serves some of the best sandwiches in the whole wide world. Their menu is always different and they use items from their own garden and local farms as much as possible. They used to be called Four and Twenty Blackbirds, which was a fabulous Zagat rated restaurant that had a brunch we still dream about and wish they would bring back. But they won't no matter how much we beg. Sigh. Anyway, they sold out of the burger in less than two days (and they're only open 3 hours a day), and called us for more beef ASAP to continue offering it. We were so excited, plus it gave us time to get over there and have lunch. The burger was amazing (of course) but what was really fun was to see people ordering it. We've already started getting emails from their customers wanting to order beef!

In a couple weeks The Whole Ox will have more fresh Wagyu, which is always neat, but we are offering frozen beef in their freezer section, which is pretty cool too. Soooooo, all that means I suppose is that we really are in the cattle business, which I just realized now, for real. Huh.

Sunday, March 25, 2012

Report card

We got James's first report card about 2 weeks ago. First of all, this just makes me feel like a grown up, which is funny. But it's also just so interesting because it shows all the progress that James has made, which is truly significant.

This is a little hard to see, but basically, the blue bars are where he started and the red bars are where he is now, and the number scores indicate this as well.

And here's a little summary of what it means. Fascinating.
This week I will learn which reflexes actually have a relation to digestion and am hoping that eventually this helps everything. Treatment for the bacterial overgrowth went well and James's appetite has definitely improved, along with gaining a much needed pound. Apparently the overgrowth is rather common among sensory kids, and it may just have to do with this neurological disconnect that affects so many things. He may need treatment again; some kids have to undergo monthly antibiotics; but we know what we are dealing with in this at least. There can be dietary triggers to it as well, but it can be really hard to pinpoint. We do know that his gut can't handle processed foods really well, especially baked goods. The hard part about this is that those things are really the easiest things for him to eat. So while I never wanted to feed my kids a bunch of processed crap, it was an easy thing to hand him that he enjoyed, ate by himself, and usually was packed with calories. Plus it was easy to keep on hand, prepackaged, etc. So now I'm trying to figure out how to make it all myself.
Whenever I run low, I make a really good Pioneer Woman chocolate cake, cut it into sections, wrap up the pieces and freeze them individually. So when he asks for chocolate cake, voila!!

Same with muffins and pancakes, which is usually our morning breakfast. Then I've concocted this no bake cookie, where basically I throw oats, nuts, full fat coconut milk, peanut butter, and a little maple syrup into the food processor and blend it up into a thick paste. Then I press it onto wax paper and chill for a few hours. Once it's cold I cut it into servings and then toss it into ground oats so it's not so sticky.

This is what he takes to school for a snack. You can even make abort of sandwich out of them, like a Jammie Sammie. Very tasty, and you can use regular milk if you aren't trying to gain multiple pounds. :) Its so nice to be able to make something he enjoys and actually finishes during his short snack time at school. My only fail has been at homemade Pediasure, which he has started drinking and has probably made the biggest difference in his weight. I tried all sorts of things, but he just loves the bottled stuff. So I'm lettin that one go! It kills me just a little. ;) He's doing great though so who am I to complain!

YouTube Video

Tuesday, March 13, 2012

The Value of a Hug

I know, two posts in one day?? Never gonna happen again. Just sayin. But while talking to James's teachers today after school, a rather poignant thought hit me. Then another mom of a feeding kid posted a speaking article. I wanted to write it all down before it was lost in the recesses of my mind...a very very scary place.
I remember the first time James gave me a kiss, because it was long after most moms got kisses from their kids. But since I didn't know better for a long time, it wasn't something I missed until I realized the time frame. I also didn't over think about the fact that he'd never given me a hug. He snuggled, and he would lay his head on my shoulder. That was a hug. When you picked him up, limp rag doll. But this weekend I picked James up and first I realized he was starting to help with tension in his muscles. Then I asked him for a hug and he actually put his arms around me and squeezed. I didn't even realize what I was missing, but it was heaven.
I don't usually think about James as a special needs child because, theoretically, he will overcome his obstacles. But I can tell you that two years ago, I had no idea how long our road was going to be, even though we refer to that time as The Dark Days. But there is a light at the end of the tunnel for us, so I would never want to make light of other families' true special needs by putting us in the same category. But the fact of the matter is, for now and for the foreseeable future, James is a special needs kid. I can't treat him like a 'normal' kid just yet. I can't let him walk down stairs by himself, or start to swim, or get dressed, the list goes on. And I can't let him regulate his own feeding. He's just not there yet; he doesn't have those survival skills that are innate in most others. So when a friend posted this article today, it really hit home.
Written by Maria Lin
6 Things You Don't Know About a Special Needs Parent
"About 6 million kids in America receive special education, according to the U.S. Department of Education. One out of every 10 children under the age of 14 has some type of special need, which includes any physical, cognitive, or medical disability, or chronic or life-threatening illness.
My 3-year-old son Jacob is one of them.
He has a disorder of the 18th Chromosome. The 18th Chromosome has various named disorders, including Ring 18 and the more well-known Trisomy 18 (which affects Rick Santorum's daughter, Bella). My son has the more rare 18q-. Only 1 in 40,000 Americans have Chromosome 18q-, which means that less than 7,800 Americans are affected by this disorder.
Because of this disorder, Jacob has had serious medical and developmental issues. He has had heart surgery, kidney tract surgery, bronchoscopies and endoscopies, slept with an oxygen tube, and has had dozens of medical tests and sees numerous specialists. We've been in and out of hospitals and doctors' offices since he was three months old. He also has severe developmental delays and receives speech therapy, occupational therapy, physical therapy and behavioral therapy.
Raising a child with any disorder, condition or special need, is both a blessing and a challenge. A challenge for the obvious reasons, and a blessing because you don't know the depths of victory and joy until you see your child overcoming some of those challenges (sometimes while smiling like a goofy bear).
Chances are that you know a special needs parent, or you may be one yourself. As a special needs parent, I often don't share my feelings on this aspect of my life, even with my closest friends, so I decided to compile a list here with the goal of building understanding (I was largely inspired by this beautiful post, authored by another parent to a child with a chromosomal disorder). I don't claim to speak for every special needs parent out there, but from the ones I know, some of these are pretty universal. If I've missed any, please leave a comment below.
1. I am tired. Parenting is already an exhausting endeavor. But parenting a special needs child takes things to another level of fatigue. Even if I've gotten a good night's sleep, or have had some time off, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of tending to those needs. Hospital and doctors' visits are not just a few times a year, they may be a few times a month. Therapies may be daily. Paperwork and bills stack up, spare time is spent researching new treatments, positioning him to sit a certain way, advocating for him in the medical and educational system. This is not to mention the emotional toll of raising a special needs child, since the peaks and valleys seem so much more extreme for us. I am always appreciative of any amount of grace or help from friends to make my life easier, no matter how small, from arranging plans around my schedule and location, to watching my son while I am eating.
2. I am jealous. It's a hard one for me to come out and say, but it's true. When I see a 1-year-old baby do what my son can't at 4 years-old (like walk), I feel a pang of jealousy. It hurts when I see my son struggling so hard to learn to do something that comes naturally to a typical kid, like chewing or pointing. It can be hard to hear about the accomplishments of my friend's kids. Sometimes, I just mourn inside for Jacob, "It's not fair." Weirdly enough, I can even feel jealous of other special needs kids who seem to have an easier time than Jacob, or who have certain disorders like Downs, or autism, which are more mainstream and understood by the public, and seem to offer more support and resources than Jacob's rare condition. It sounds petty, and it doesn't diminish all my joy and pride in my son's accomplishments. But often it's very hard for me to be around typical kids with him. Which leads me to the next point...
3. I feel alone. It's lonely parenting a special needs child. I can feel like an outsider around moms of typical kids. While I want to be happy for them, I feel terrible hearing them brag about how their 2-year-old has 100 words, or already knows their ABCs (or hey, even poops in the potty). Good for them, but it's so not what my world looks like (check out Shut Up About Your Perfect Kid). It's been a sanity saver to connect with other special needs moms, with whom it's not uncomfortable or shocking to swap stories about medications, feeding tubes, communication devices and therapies. Even within this community, though, there is such variation in how every child is affected. Only I understand Jacob's unique makeup and challenges. With this honor of caring for him comes the solitude of the role. I often feel really lonely in raising him.
4. I wish you would stop saying, "retarded," "short bus," "as long as it's healthy... " I know people usually don't mean to be rude by these comments, and I probably made them myself before Jacob. But now whenever I hear them, I feel a pang of hurt. Please stop saying these things. It's disrespectful and hurtful to those who love and raise the kids you're mocking (not to mention the kids themselves). As for the last comment, "as long as it's healthy," I hear a lot of pregnant women say this. Don't get me wrong, I understand and share their wishes for healthy babies in every birth, but it's become such a thoughtless mantra during pregnancy that it can feel like a wish against what my son is. "And what if it's not healthy?" I want to ask. (My response: you will be OK. You and your child will still have a great, great life.)
5. I am human. I have been challenged and pushed beyond my limits in raising my son. I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have without him. But I'm just like the next mom in some ways. Sometimes I get cranky, my son irritates me, and sometimes I just want to flee to the spa or go shopping (and, um, I often do). I still have dreams and aspirations of my own. I travel, dance, am working on a novel, love good food, talk about dating. I watch Mad Men, and like a good cashmere sweater. Sometimes it's nice to escape and talk about all these other things. And if it seems that the rest of my life is all I talk about sometimes, it's because it can be hard to talk about my son. Which leads me to the final point...
6. I want to talk about my son/It's hard to talk about about son. My son is the most awe-inspiring thing to happen to my life. Some days I want to shout from the top of the Empire State Building how funny and cute he is, or how he accomplished something in school (he was recently voted class president!). Sometimes, when I'm having a rough day, or have been made aware of yet another health or developmental issue, I might not say much. I don't often share with others, even close friends and family, the depths of what I go through when it comes to Jacob. But it doesn't mean that I don't want to learn how to share our life with others. One thing I always appreciate is whenever people ask me a more specific question about my son, like "How did Jacob like the zoo?" or "How's Jacob's sign language coming along?" rather than a more generalized "How's Jacob?" which can make me feel so overwhelmed that I usually just respond, "Good." Starting with the small things gives me a chance to start sharing. And if I'm not sharing, don't think that there isn't a lot going on underneath, or that I don't want to.
Raising a special needs child has changed my life. I was raised in a family that valued performance and perfection above all else, and unconsciously I'd come to judge myself and others through this lens. Nothing breaks this lens more than having a sweet, innocent child who is born with impairments that make ordinary living and ordinary "performance" difficult or even impossible.
It has helped me understand that true love is meeting someone (child or adult, special needs or not) exactly where he or she is -- no matter how they stack up against what "should be." Raising a special needs child shatters all the "should bes" that we idolize and build our lives around, and puts something else at the core: love and understanding. So maybe that leads me to the last thing you don't know about a special needs parent... I may have it tough, but in many ways I feel really blessed."

And it's true. Which leads me to this, sappy as it sounds. The value of a hug: absolutely priceless.

Big boy steps

We saw some neat progress this weekend I wanted to share. On Saturday we went to the annual Ducks Unlimited dinner with friends, which is basically a BBQ with auction items such as guns, vodka, and chairs. Those three things really do go together. Anyway, we usually go every year, though I bagged out last year while I was miserable and pregnant and trying to wean James from the feeding tube. It hasn't been super fun since James was born because things were hard for us and for him, and this made things rather unfun (my IPad is telling me that's not a word, but what does it know). They have games for the kids, but while James liked watching other kids, getting him to participate usually ended in tears. He didn't love the loud noises, didn't want to clap, eat, stay awake, so he would be whiney, which made me irritable and whiney, which made me never want to leave the house again ever (I tend towards the extreme sometimes).
THIS YEAR, however, was much more fun. Aside from James getting whacked upside the head with a beanbag (seriously, there are some mean ass kids out there that need a whoopin), there were no tears and minimal whining (I loathe whining, can't take it). James actually conversed with other adults in an audible voice (we've been practicing this a lot), ate dinner and asked for cake and more frosting (of course), and played a game with other kids. But my absolute favorite part of the evening was whenever there was applause, he would enthusiastically join right in! It was so cute and we have NEVER seen him do it before. I will 100% give the SMILE program credit. We were so proud of him. He has been working so hard, and Eve has really been a trooper hanging with me while we cart her big bro all over town. They are awesome, as long as nobody whines.

I let my child play on the floor of Barnes and Noble. Don't judge.

Pink camo and an REI vest complete with pockets? Yes, please.

Sunday, March 4, 2012

Anticlimactic test results

Last week we went in for a blood draw to see if there's any...anything to explain James's fairly recent weight loss, bloated tummy, etc etc. I thought for sure something was going to come up. The blood draw was traumatic. So much easier when they are younger actually. His fear of the doctor's office is bad enough, combined with his fear of lying on a table, being restrained, and the fears he didn't even know he had about blood draws. Actually, I don't think he felt a thing. I covered his eyes and we all counted. The nurse did an AMAZING job. I've seen some sorry excuses for blood draws in my life, and she rocked it. But it still wasn't fun. As soon as he was done we put some F35 videos on my phone. That pretty much made everything okay as far as he was concerned. It was hard getting my phone back though. :)
Thursday we were finally in to see Dr Borowitz and get the test results. First you meet with the students and interns and tell the story aaaaallll over again. I really don't mind; we are pretty used to it and I hope they remember us if they ever come across a similar case. Unlikely, but still. They said Dr Borowitz told them it was a 'really interesting case.' Nice.
Anyway, James has lost weight, which we knew and were concerned about. They are too, which is good. BUT, as usually happens with us, his test results are COMPLETELY NORMAL. It's not like I want him to have a disease or anything, I just want something fixable. Sigh. But here's what was come up with:
I had been thinking the current issue was something that had been progressing slowly for a long time, but Dr Borowitz sees it more as something acute, which really makes sense when you step back. End of December I started calling with questions. Something had changed, not necessarily gotten worse from a previous condition. The most likely culprit now is bacterial overgrowth. This is when bacteria gets into the upper intestine, while it should only be in the lower. Good for the bacteria, bad for the tum tum. I explain it this way so everyone can understand. Also, it's pretty much all I understand. Did you know my brother is a doctor? I majored in Business, and I've barely worked outside of a barn. Anywhooooo, bacterial overgrowth. It creates gas, bloating, diarrhea, eats up calories, and continues to multiply until treated. You can do a biopsy, but it's not always correct and a real bummer anyway. You can do a breath test but they take several hours, etc etc, or you can just give them some antibiotics and see what happens. That's what we're doing for now and we will see what happens.
What was great at the visit was getting to talk every possible scenario through all at once. It's allowed us to have a really good 'go forward' plan in our heads without having to spend a month emailing. Oh I'll still email. A lot. But it was still really great and made us feel good. It's only been a few days, but hopefully this helps significantly. Then we will put him back on some Pediasure to boost his calories and help him gain more weight and get back on track.
Now, none of this explains his ongoing GI....issues if you will. But a theory is that those issues are actually part of the neurological disconnect. That will be very interesting to research and see how the MNRI work affects it over time. But as long as he is absorbing all his fats and nutrients, which he seems to be from the bloodwork, then it is workable. Almost more of just an inconvenience for now. Inconvenient seems like a mild term, but its true if you think about it. Which I do. A lot.
Speaking of school, we will get James's first report card this week and I can't wait to see it! In the meantime, here are some more pictures of what he's up to!

Hangin in there all by himself!

Hammin it up!

Very impressive!

If college had been this fun, I probably would have gone more.