April: A Rough Month for our family

Two years ago in April we entered the hospital with James for over a month. The following April my cousin's daughter was in ICU in Guam with the Whooping Cough. If I thought the month had some bad juju, Thursday sealed the deal. After a very usual morning of a pancake breakfast, James had a small throw up at 10:15am. I sighed a bit thinking bacterial overgrowth or whatever else is going on was rearing its ugly head. Again. But he kept running around and laughing with Eve. About 10 minutes later he complained of an upset tummy. We went to the potty where he pretty much pooped water and then threw up miserably. I was sitting on the floor of the bathroom with him just in case anything else happened, typing an email to UVA explaining our continued troubles and trying to figure things out while chatting with James about airplanes. All of a sudden, his eyes started to roll back in his head and he turned sheet white. I shook him awake and called 911. Then Tom. While I waited he tried to lose consciousness 4 times. Of all I've seen, this was terrifying! It would take a lot for me to call 911. I'm pretty self sufficient, but as I sat with my 9 mth old daughter playing in her safety corral 30 minutes away from the better hospital (with no cell reception for 20 of those minutes), it ended up being a really easy decision. When I told James doctors were coming he got very upset and consequently seemed a lot better and more lively. But while we waited TEN MINUTES for the ambulance to arrive, he started to get listless again and kept asking to sleep. I wasn't sure precisely what sort of sleep he was talking about so I just told him we had to wait to sleep.
While I carried him around the house looking out the window and trying to distract him I threw some baby food and extra diapers in my bag and sort of changed out of my pjs. I didn't, unfortunately, get a chance to go to the bathroom, which made for a really rough ambulance ride.
When the EMTs arrived, James got so upset again that he didn't seem so bad, and all his vitals were normal. They asked if I even wanted to have him be seen or if I just wanted to take him to my pediatrician. I'm thinking they thought I was overreacting a bit. But, yeah, I opted for a ride to the Fauquier Hospital. I wasn't too keen on trying to drive with 2 kids down a road with no cell service while one was thinking about passing out; silly me. So off we went: James sitting on a gurney, me next to him, and Eve mostly safely strapped onto a bench in her car seat. I had flip flops. Neither kid had shoes. This was after I herded the 3 dogs into the house and said goodbye to the goats. Nuff said.

Fast forward a bit. We get to the hospital and they draw blood and run an IV. They did a great job but it was horrible, just horrible. Eventually he calmed down and fell asleep in my lap. Tom took eve for a drive to sleep and to get some food. We're freaking pros.

The blood work showed what we already knew. He was severely dehydrated. How he got that way so fast or why he got sick in the first place, I have no idea. But after some Zofran (anti nausea) and 2 fluid boluses, he was looking much better. The nurse practitioner was talking about sending us home which sort of sounded great and sort of mostly terrified us. You get a lot of funny looks when you resist leaving the hospital. And when she mentioned that insurance wouldn't clear keeping him without reason, we kind of laughed at her. I mean, I get it. But come on. It's pretty much cliche. Actually Tom really laughed at her. She didn't laugh. I'm not sure we can go back there.

But we did wait until James had eaten some crackers and held them down and then went home with the understanding as a family that if anything went wrong we would drive straight to UVA. I'd been in continued email contact with the GI office so I knew they'd be ready for us.

Fortunately, he's pretty much fine. Which is almost more mystifying, is it not? We stuck with clear liquids and some crackers and bread yesterday and are adding more foods back in today and tomorrow. And we are pushing the pedialyte hard. But he's great and happy and wild. And we have no idea. Again.



So keep him in your prayers if you can!



He's come a long way but we're not there yet!

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.

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:

http://www.youtube.com/watch?v=7uFo5ADJtyw&feature=youtube_gdata_player

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.

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!

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.

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.

The plot thickens...

We are learning so much from the SMILE program, I just have to share and explain, cause we are getting into some good nitty gritty. I love nitty gritty.

What they do here is a little different than just OT work. The way I think of it is that it takes all the different therapies of usual OT sensory work and digs deeper, breaking it into smaller pieces. The program director here said it's like OTs only have 50% of the picture. To me at least, this all makes a lot of sense.

Dr. Masgutova developed the method the SMILE program uses. It's called, get this, the Masgutova Method, also of Neuro-sensory-motor Reflex Integration. (see www.masgutovamethod.com if you're interested in a much better explanation than I can give at this point) She found that children with developmental delay, for a large variety of reasons ranging from autism to a traumatic accident, have a dysfunction in their reflexes. The reflexes we have as a baby are there for survival. But as we grow, they are not 'active' anymore, though they are still present in a protective sense. The maturation of reflexes have all kinds of learning implications that I won't really go into but if anyone is interested, I am happy to share the info from the Power Point printouts I have. It's fascinating.

I'm going to explain only what I know in my own head for my own child, but just know that there are so many combinations of difficulties and this is just a little bit of what we are dealing with. I will know more when his report card comes back. They test 32 different reflexes and then write up a report and it takes some time.

Basically, they test all these reflexes (an example is sticking your finger in a baby's hand and they automatically grip your finger), and the reflex is either normal, dysfunctional, or pathological. Here's another example that pertains to James: if someone falls forward, a normal reflex would be to stick their hands out if front of them. Dysfunctional would be putting their hands out a little but not protecting their face from hitting. Pathological would be their hands fly out behind them. James is pathological on this. So while some might think he does this consciously so as not to touch things due to his tactile sensitivity, it's actually his automatic reflex. The problem with the OT work we have done in the past is that he's a super smart kid, as most of these kids are, so he will learn any skill you ask him to do and adapt. But the reflex is not there when he needs it in a 'survival' situation. So that work was not harmful, or wrong in any way, it's just not enough. But I had never even heard of MNRI, honestly, until James had been going to school for a few weeks. I mean, I saw their website, but I didn't get it.

Now when these reflexes are wonky (technical term, sorry to get so scientific), they create a rough world for a kid to live in. So much uncertainty, lack of confidence, lack of muscle tone in some instances. Imagine going through life instinctually aware that you can't catch yourself if you fall, you can't tell how far off the ground you are, you can't save yourself. (On the flip side, kids that have amazing reflexes get put on the gymnastics team.) But also imagine the difficulties in day to day life, like school, riding a bike, climbing into bed, getting OUT of bed. Everything is a struggle, and while I think James will be an amazingly strong person for all this, it's hard on the little dude right now!

So at school, they go back and reset each wonky (it'll catch on) reflex. I'm not super sure how this works for each and every one, but it takes time and we are seeing progress. For instance, it's always been so difficult to rinse James's hair in the tub. I always thought he didn't want to get water in his eyes and was just resisting. But it's because it is u bearably hard for him to look up! If you get him to tilt his head back, his eyes still point down. He can't hold his balance to look up, even while sitting down. We are practicing this a lot and it's very evident how uncomfortable it makes him. Once again, he's such a great kid, he'll do it while gripping your arm for dear life. We will get there!

Here are a couple of pictures of some of the exercises in class!










Okay, and I can't post anything without posting some cuteness photos. So here goes: