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:

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!!!