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:

Oh the hilarity!

So many of you know about our Dominion Star activities. I'm sure it sounded like some sort of funny experiment we would try out, low risk, entertaining for all, but maybe not so different from our usual lives of horses, chickens, and goats. I mean, what's one more farm animal, right? Well, that's kind of true....but...

A picture may be worth a thousand words, but a video, well, I can't even count that high.
So the beef thing is starting to get big! We always thought we would have mostly local business, but we have been shipping all across the country! Washington, California, Texas, Wisconsin, North Carolina, southern Virginia. We had a lot to learn about the shipping process and packaging, but thanks to some family guinea pigs, we are streamlined and can ship any time. We have given samples to our local restaurants (you know, that little spot called The Inn at Little Washington) and they said the flavor was incredible! High praise for grass fed beef, I can tell you that!

In other news, James is doing amazing in school. He absolutely loves it and we are already starting to notice changes in him. For instance, he was never a climber. He would have never climbed out of his crib, onto a chair or bed or ladder. Before we knew what we were in for, we just thought that was part of his personality. Now we know that he had low muscle tone and his vestibular system was out of whack (this would be the workings of the inner ear that help the body to balance, speaking very simply as there is still much I don't understand). After about 3 days of school, James climbed right up on our dining room chairs (which are bar height--not the most brilliant idea when it comes to easiness with kids, btw), grabbed a toy and his water and climbed down. Not only that, he looked perfectly capable of doing it! Maybe it has been instinct, but it used to make me so nervous to leave James anywhere on a raised surface, stairs, chairs, etc. Now I realize that it's because he wasn't stable and capable of controlling his body in those circumstances. Fascinating stuff. If you go to www.gmskids.com you can see some of their explanations of the sensory systems broken down into simple terms and it's really interesting. We are so proud of all James is doing and the strength he is gaining. He's always been so tough and now he's able to put it into action! He is eating very well (though since he has started drinking milk I think he is drinking a lot of his calories.....but in that case, I think I do too. I mean, not milk, but...anyway) but still battling GI issues. We will be getting some lab tests done here pretty soon so I will keep you posted.
Eve is a superstar. She has had a couple of nights where she's slept through the night entirely, but even when she gets up it's not too bad, except for the week where she had a cold. That's just misery. But I imagine being stuck on your back in a Woombie with snot in your nose is no picnic either. She is a delight to be around, until she's not, but she's more of a delight then not, so we'll keep her around. She's being SUCH a trooper taking James to school and sitting around or running errands with me 3 days a week. I have a feeling she's going to be a groovy kiddo as she gets older.

Our family had one of the best Christmases ever and here are a few pics to show off!



This, I think, is what Eve should just get used to.




I know, it's not fair to others.



I can't believe I have a GIRL!!!


I love this attempt to wrangle a family picture.



Easy to see why she has everyone wrapped around her finger.

Great Strides, and all the little in betweens

Today is Eve's 6 month birthday. Holy crap. Part of me feels like she just got here and part of me feels she's been here forever. As I write this I am nursing her in a Starbucks in a Barnes and Noble in Manassas. My multitasking skills are unparalleled. And it's a good thing because this is what our foreseeable future looks like, 3 days a week anyway. James has started school! And it's pretty much the coolest school ever, created for kids with sensory issues. It's all designed around movement and targets each child's problem areas by assessing where the gaps in their natural development are. It must be fun too because for James to happily leave me in a strange place when he's never been away from me for more than a few hours and never in a new place, well, I just didn't expect that. Never a tear or even a whine. I am so excited for his future and I'm quite honestly a little relieved to have some of the pressure taken off of me. See, despite appearances, I'm not actually a therapist and I don't really know what I'm doing. I remember watching Autistic-Like, Graham's Story and listening to Graham's mom say how exhausting it was to feel that everything you do, every time you play, every time you sit to eat, is something scheduled in to save their lives. That's a lot of pressure and takes a lot of the joy out of these early years. Cause let's face it, the great strides can be very far apart, and the little in betweens can really wear you down.
And so here we it, killin' time since Manassas is about an hour from home and school is just 2.5 hrs. While James is there he will work on puzzles and fine motor and listening and also play in a giant ball pit and jump on giant trampolines. I totally want to play in there too. If you want to check it out. Go to www.gmskids.com. We are so lucky to have something like it to get James ready for the real world. We should all be so lucky really! But I may need to find an alternative to B & N, like a gym. I feel like I have to buy something, as I sit reading my Amazon Kindle next to the Nook display, so Starbucks is winning. By a lot.
That's our most recent development, but all sorts of things have been going on! James is eating great and doing more and more on his own. He tells you when he's hungry and when he's not. He has started drinking lots of milk which is awesome. After some continued GI problem, we have been trying out a fructose free diet. It sounds fairly simple until you start researching what has fructose and also fructans, which is in wheat. You can end up on a sort of gluten free diet, but then take away most fruits and veggies. It's not easy keeping things yummy and creative for when James asks for something forbidden, but I'm pretty good at southern engineering. Mainly it means everything has to be homemade which is really not a bad thing...but........kind of a bummer for me. :) Most importantly, after about 2 days we saw great GI improvements and he started sleeping thru the night for the first time in his life. Go figure. It builds up damage in the gut, so I think he had been feeling worse and worse. And what it means is that James has Fructose Malabsorption. We'll see if there's anything else going on as we progress.
Things are great and moving forward at the Mansmann household! We are looking forward to the best Christmas in a long time with 2 healthy, happy kids and our wonderful family around us. Can't get much better than that!!!










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Quite a dude

Small warning: this might actually make you cry a little. :) Yesterday we went down to UVA to see one of the GI docs about the tube site. It had granulation tissue when it was first removed and possibly because of that is not closing up. Dr Barnes wasn't comfortable using the silver nitrate to cauterize the tissue without a surgeon looking at it. Here's why I love UVA so much. Dr Rogers was James's surgeon and he was in the OR. His partner, whose name I can't remember now (terrible of me) was somewhere in the hospital. We have all James's appts in the hospital clinic area. So, ordinarily, UVA's rules are that you need to see the surgeon who performed the surgery unless it's an emergency, which this clearly wasn't. Fortunately everyone knows us and knows how far we drive, plus Eve chose that time to scream her head off while James was crying in terror of white coats (more on this later). Basically, pity and reason won out. One of my favorite surgical nurses got it done. So Dr M (ok, it does start with an M) came in and while we are still not sure if just granulation tissue is the problem, or if his stomach lining is pushing tissue out (sorry if you're squeamish), the doc cauterized the tissue, sent me home with some stuff to continue treatment, and we will give it two weeks. So if everyone could say a couple of prayers that this works, we'd all appreciate it. The surgery is no big deal; it's outpatient; but I just don't want to put James through it again. And me too. :(
It's not unusual, by the way, for horse people to be sent home to treat their own horses with injections and treatments of all sorts. But it's more unusual, for obvious reasons, with children. But parents of kids that have been sick a lot have some sort of weird status with doctors. They seem to accept you as somewhat of a nurse. Which you are, but so often you have to fight through the red tape to get stuff done. Like, I know my kid has this and such, can I just get a script? But instead you go in for a pointless dr appt where they confirm what you know, you get the script you wanted, but you wasted a day of your life. Again, I understand there are lots of stupid people out there, but it's annoying when you're not one of them. I've said so many times how you have to find the right doctors and therapists and not to settle for anyone you don't like. When you find those right people, what ends up happening is that they trust you as much as you trust them. They listen to you and your instincts and you trust their decisions as the best ones for your child, because you work together. It doesn't happen that often, and THAT is why I love this group so much.
I mentioned White Coat Syndrome. I can't believe we have gone so long with James being so amenable to...everything and everyone. Probably because he was asleep for most of his treatments and also because he would truly feel awful or be in pain, and the doctors would actually make him feel notably better in a visit. But now he's scared and it's awful. You'd think when they are older it's a little easier because you can explain things, but the flipside is that they can too. So I have James absolutely hysterically crying and saying things like: I just wanna go home! Why mommy? I feel fine! I wanna get down. Please can I go home.
It was really terrible and there was nothing I could do but distract him by talking about random things, but anytime the door handle shook he would startle and cry again. But we finally get done and he sobs a thank you to the dr, because he's amazing, and we start our long trek back to the car holding hands while pushing Eve in the stroller and lugging our giant bag. It's at least a mile hike but it's a beautiful day so we're just strolling along and about halfway James stops and looks up at me and says, "Mommy? I love you, Mommy." I almost lost it right there. What a kid! He's so brave and good natured and I cannot wait to see the man he becomes!

I promise this post won't make you cry.

That's for Whitney. Apparently all I do is make people cry on here, so just wanted to say that it's safe. ;) nothing has been cry-worthy around here in a while, aside from lack of sleep and a muffin top. Eve is great, James is great, we're all super duper. That said, it's also super hectic around here, but I'd like to think that's normal....ish. 3 years should be a great gap between kids since your three year old is most likely potty trained, feeding themselves, dressing themselves. Well, mine doesn't yet. Don't get me wrong, he will. But just like eating and chewing, he didn't learn the process in the normal progression of things, so it's hard to teach that stuff later. Truly, I had no idea how to even start, (enter fabulous OT here). Denise gave us some very helpful steps to get james on his way, which is great! He is now able to undress himself fully, which is fabulous and I'm not sure why, but such a huge help. See, it's like having two little infants when you are having to feed, dress, change, etc both of them. It takes hours to get out the door. Literally. And I know the are lots of parents with kids closer in age who deal with the same thing, but all I can say is, Bless Your Hearts. But we are getting there. :) At home James is usually nudie and has no potty accidents at all. he's awesome. And he's starting to learn the difference between pants with a diaper on and without, but I haven't ventured outside the house especially since everywhere we go is quite a drive. I'm so proud of all he accomplishes. I can't imagine how frustrating it is and he's such a good sport!
Feeding himself is going really well too. He's wielding a fork with great style and is even spooning himself applesauce. That's a new one too: applesauce. I haven't given James anything spoonable in a while. The spoon was the enemy for so long, I did away with it. Worked a little with a spork (and who doesn't love a spork?). And interestingly enough, applesauce is widely disliked by feeding patients. It's very gritty and gets stuck all over your mouth. He used to make awful faces if he ate it. But when were in Dallas last, my mom had some and I just wanted to see what he would do. He loved it! Very exciting stuff and has given us some more variety. But, he wouldn't close his mouth around the spoon since he didn't want anything to touch his lips. I happened to be going to see Jenny for a checkup the next day, and after working with her the one time, he is not only spooning it himself, he completely closes his lips around the spoon and is doing better in that regard with all foods! Jenny also gave us a plan to work on more deliberate control of the food in his mouth so I'm hoping he will become a more well rounded chewer. :)
Eve is wonderful also. She just over there months and weighs about 14.5 pounds. She's busting out of 6 month clothes. Hilarious. Because shes so big and mature looking, I sometimes forget how young she is. But she's still just a little baby so all her stuff is pretty normal. She's not a great daytime sleeper, because I think she's so darn alert and interested in everything. She doesn't want to miss out! She seems rather sensitive to light and noise, much more than James was. Blackout blinds are on order. She doesn't like a pacifier anymore (so sad), so nurses herself to sleep which is fine since I'm here but I will feel kind of bad for a future babysitter. My big girl is also teething right now, which is amazing. She drools a ton and is chewing on whatever she has and we had three very miserable nights. Since she's usually a pretty good sleeper overnight, I was sad and scared. ;). Honestly, I took her to the dr. Well I did think there might be something wrong with her ears. We just saw whoever was available, so since she was not our regular doctor who knows our whole story, well, I'm pretty sure she thought I was crazy. It's not the first or last time. But fortunately the nights are slowly returning to her usual. And she's just about the happiest little chubber you've ever seen unless she's in her car seat, which she loathes. Sigh. You have to understand that we drive at least half an hour to go most places, but at some point she'll get over it. She just doesn't like the restraint so you better
keep the car moving to keep her happy. She's a very opinionated little girl and seems to communicate very clearly. :) as long as we all do as
she says, nobody gets hurt. I can't wait to see what her future bring!!
Until next time, we'll just keep on keepin on!!!

4 years seems a paltry amount...

So today is our big 4 yr anniversary!! And all we can think is...that's it? Lol. For all we've been through since getting married, 4 yrs does not sound impressive enough. 2 kids, several hospital stays, countless therapy hours (for James, not us :)), feeding tube placed AND removed, cows, pigs, goats...I'm sure there's more but I've blanked it out. (Tom tells me my unique ability to "blank" things out is why I'm so happy---I said, "you're welcome.")



Eve is almost 2.5 months old, 13 pounds, and very smiley. I mean, the second kid is always a bit easier cause you just know more, but this one is pretty good. When my oldest nephew was a baby and I would visit Dallas every month to see him, I would go to my sisters house before 7 every morning (I was popular) to watch him wake up. He would be so smiley it was hilarious and awesome. Eve is like that. She wakes up every morning at 6:30 just happy as can be. Love it! She wakes up once or twice a night to eat and goes right back down. Never poops overnight. Awesome.



James is doing so well! He keeps gaining weight and eating like a champ. He rides the goat, feeds the cows, wrastles the dogs, and is unerringly sweet to his baby sister. As far as sensory stuff, we continue to make progress. Basically, his senses are pretty good, but everything was out of whack during critical developmental times, we are playing catch up. Denise has come out to the house several times to help with fairly practical issues. As a first time parent with James, we've had a hard time figuring out how to teach him basics like dressing and undressing, feeding himself, and potty training when the more natural order of things was disrupted or just skipped. Since he wouldn't touch anything, he never learned to take his shirt off, or socks, or anything. He can be very passive about things like that, and we have really helped him do everything, because it was all so hard. So it's hard going back but he's doing great. He's taking his shirt on and off with very little help, and doing darn well with pants and shoes. He had to learn it wasn't gonna happen by using his fingertips. :) potty training will be tricky, but we have a pretty good plan ready to implement in a few weeks after we get back from a Texas trip. I'm honestly dreading it. Itll be mayhem. Lol. We are also still working on strengthening his upper body and fine motor skills, but he's doing very well with all that. He is feeding himself more and more and wielding his fork better and better.



That's pretty much all that's fit to print for now! We are going to see Jenny when we go to Texas, so we'll get a good read on james' skills and how to continue to fine tune everything!

Happy Birthday to me!!

Well I am a Leo. That's how we roll.
But this was a pretty special one, which is sayin something because Tom has been outdoing himself every birthday for the past 9 years. So not only am I not yet 30, which is just fun til next year, I have two amazing kids and equally amazing friends. Last year's birthday seemed hard to top, with Tom and Rob planned a huge shindig for Annie and me with tons of friends, food, and, as always, bubbles. This year was a little quieter, but we do plan to celebrate for the rest of august. It started with Tom finding me one of my heart's desires: an entire set of handmade, antique champagne coupes (the old fashioned saucer glasses). They are soooo cool, I can't get enough of them. We had a quiet day before friends came over for The Forbidden Dinner: stinky, unpasteurized cheese, pate, champagne, you get the idea.

The next day, which I still consider my birthday due to the aforementioned Leo-ness, we headed down to Charlottesville to meet with Dr. Borowitz, James's GI doc. We have not seen him since I was first pregnant with Eve, and he's one of the greatest people and doctors, so that was a fun visit in and of itself. But we were there regarding the next steps in relation to the gtube. Because we see all UVA docs and therapists, and because of their new computer system headed up by Dr Borowitz, he has been able to stay up to speed on James's case this whole time without actually having to see him all the time. We wanted to know if the tube should come out or not, and thru some hone conversations prior to this appt, knew it was coming up soon anyway.

There are lots if ways to do a tube wean, and probably each way should be individualized for each child. I had heard about rapid tube weaning and the idea has a lot of merit. Basically when you deem a child has formed a positive relationship with food, and no disabilities are preventing them from eating, you stop the tube, put the food in front of them, and keep doing that for about 2 weeks. You expect for them to lose about 10% of their body weight, which isn't a big deal for a lot of kids, and they can take quite a bit if time to get back to where they should be. You let them dictate how much to eat to learn to listen to their bodies' signals and use hunger as a motivater. And that's why it takes a whole to regain the weight because that is not a process you can rush along. So again, the idea is great, but not everyone who does this has watched ther kid go thru an illness quite like James had last year. Many of those children have had tubes from birth and may have way worse problems. But kidsdoing this kind of wean can expect to get rather dehydrated and need to be monitored closely. After talking to pretty much everyone, we decided that we worked too hard to get James hydrated and way too hard getting James to gain those 2 lbs he might lose, so we tweaked that theory and went a little slower and a little less hardcore. Hey, I got nuthin but time.
So all this was to explain where we wanted James in order to remove the tube. Basically he needs to be able to maintain his weight and hydration on his own, but then he needs to start to gain weight as well. For about two months he hovered around the same weight so, while I knew we didn't need to use the tube (that would immediately decrease his oral eating), we weren't really there yet. But when we went to the doc yesterday he had gained 8/10s of a pound! I was thrilled. And he looks great and healthy. Real food'll do that to you.

So now ALL this was leading up to the fact that...(drumroll please) we are TUBE FREE!! Seriously, they popped that thing out at the office, put some silver nitrate in (medieval) and now the kid just looks like he has a bullet wound. Crazy. A strange concern that we had been warned about is that young children with tubes in don't realize that it is not really a body part. So they can get very upset. We have been coaching James for several weeks now and he used to get really upset thinking about it being gone, but we kept at it and he's really been great about it. Tough kid. He was literally sweating while they did the whole thing. I thought the rest of the day would be rough, so we planned a Toys R Us excursion. That was fun but it turns out he was fine. Never complained again and the only rough part is changing the BandAid.
So we are not done but this is a big chapter closed. Thanks to everyone for their prayers. Next in the prayer lineup is for the hole to close up on it's own over the next month or so so that he won't have to have surgery to close it back up!