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!

First there was one in the wolfpack....

...and then three became four.
Long overdue, but Eva Grace was born on June 20th. I can't believe it's been six weeks. Whirlwind does not begin to describe it. But adding the little glow worm to the mix doesn't change the chaos level here too terribly much. Except for evenings. Those are tricky. But it's bound to get better right? At least in a few years...



Anyway, the differences between James as an infant and Eve are remarkable. Starting with the pregnancies where this time I had zero complications aside from being diabetic. They actually stretched us to 39 weeks which was based on new research and before now fairly unheard of. But babies are better being left in as long as all is healthy, it's just kind of rare for it to go so well. There were differing opinions between the regular OBs wanting to take her at 37 weeks and the high risk docs citing the new research and wanting to wait til 39 weeks. That made me nervous, so at 37 weeks we moved to the Hampton Inn walking distance from the hospital. My mom took an adjoining room and we had a great time despite my enormous size, raging sinus infection, etc etc. But we did think something might happen before 39 weeks. I had twice weekly monitoring which was nice not to have to drive 2 hrs for plus James got a proper nap every day. But nothing happened except I got bigger and bigger and bigger. And we were in the SOUTH people. In June. Seriously, strangers were stopping in the street out of pity and shock. But then miss Eve came out in all her 9 lb 5 oz glory and by about a week later I had lost 30 lbs. Made me feel a little better about myself. If only I was one of those people who only gained 30lbs total...anyway, moving on.
So we get home and after a few days of figuring everything out, I wasfeeding breakfast to James while Eve was still asleep in the cosleeper. Tom and I realized that when James was an infant, that never happened. Ever. He basically only slept in my arms or for a very short period of time in a bed. So after that I started really noticing differences that are probably part of who they are, but also very related to all the sensory stuff that started so much soonr than we realized.
For one, James woke every 1.5 hrs to eat really for almost two years where Eve eats every 2-3 during the day and will go 4-5 hrs overnight.
Bliss.
James would nap in his swing but only until the music stopped, so you had to be ready to run and press the stupid button every 8 min before the stupid automatic shutoff. I thought eve was difficult during the day and would just tie her into the moby wrap all day so I could be sort of normal. This was before I discovered 2 things: the Soothie pacifier and the fact that she just wanted to sleep swaddled in her bed with it. I was so used to my 'happiest baby on the block" kid, it never occurred to me that I was making things very difficult for myself.
Eve is quite content to kick around in her bed or floor or whatever just to hang out happily. That's new.
When James was a babu, if he started to fuss, the key was to help him asap if you had any hope of moving on. This is why I don't sleep anymore and of course why he doesn't self soothe very well. He couldn't! The other morning eve started to cry a little but I was making james' breakfast so she was going to have to wait a bit, but she just fell back asleep. Unheard of. It was amazing.

Now I don't want anyone thinking I'm playing favorites here, so let me tell you Eve's querks and then I'll tell some great things on James.
So eve does not love her car seat. Rough stuff in our family. When we get in the car, it's a big excursion. She has gotten better due to the beloved Soothie, but there were some dark days. She's also pretty fussy at night. The normal stuff. But it takes some time to get her down. That's pretty much it.

Now James is the best big brother I have ever seen. He has not once acted jealous when he has good reason after being the center of my world for so long. He wants to show her his toys, spiderwalk on her, pet her head (hey, we have a lot of dogs), and wants her to go everywhere with him. Turns out the poor kid just wants a friend. Lol ;)

His eating is fantastic. He is eating more difficult textures in smaller bites so is able to eat less processed foods. His volume has increased considerably and he is starting to feed himself more. I'm so proud of him. We will continue to challenge him but keep letting him dictate the pace. It's worked so far so we'll just keep on keepin on!

Life as we know it

We've had all sorts of happenings here recently! On April 21st we stopped using the tube. It may not be the true wean where you wait 3 mtgs and watch him get an illness before we take it out, we'll see how it goes. If he got the flu tomorrow, we'd still use it, but he's doing great! I still have to coach him through his meals and encourage him to actually chew his food, but we're getting there. It helps a lot if I put any soft foods like pasta on a cracker or Cheeto or something. He's certainly not ready to go to school and just feed himself what he needs, but we are certainly a far cry from even a month ago! And I just have to tell you. After nearly 3 years of mixing formula, I'm ridiculously happy to break that daily grind. For some reason it was just getting to me. To be fair, it wasn't just powder and water; it was a concoction.

Our days are largely the same though...revolving around food, but that's really nothing new for anyone in my family. I do find myself running out of creativity and variety when it comes to mealtime though, so if anyone with 2-3 yr olds would send me a day or two of their kids typical meal plan, I would sooooo appreciate it. He probably can't eat everything a 3 yr old can yet, but I can improvise. I would also love to know the amount of stuff they eat. Really, this next kid will be like a first one all over again. Scary. :)

So my mom suggested I write about some more changes in our lifestyle, and I pretty much do whatever she says so....here you go. Having all these problems with James, plus our outdoorsy lifestyles, we've really gotten into very natural foods. Very. For instance, this Easter we ate a lamb shoulder raised by us and cooked a la Jamie Oliver, a ham raised by us and cooked a la Ina Garten, and a homegrown spinach salad with bacon from guess where. It was amazing. The taste is different, but better different, like if you've ever tasted real eggs instead of fake grocery store eggs. Amazing. Now, my husband has been hunting for a long time and I've been subjected to all sorts of stuff. We even have two hunting dogs, one of them has caught a live goose in mid air that outweighed her by a good 10 lbs. They've even caught bats and brought them to the door, stuck a dead mouse in my bed, and the one non hunting dog has even left, um, innards on my doorstep. So I've kind of gotten used to gross. Believe it or not, I can still be squeamish about my food. But all our research has actually now made me more squeamish about grocery meats. Not that they're all bad, but I just don't know where it comes from. I've always been funny about ordering chicken in restaurants because I like to be able to pick over it myself. I don't like gristle. Freaks me out. We have raised our own chickens twice and there's nothing like it. We tried to raise turkeys, but they are so dumb, they kept wriggling through the fencing and getting killed. It really was remarkable. I'll rely on Timbercreek Organics for turkey again from now on. :). We've been taking the livestock to a great little butcher, and even took James when we dropped off the pigs, which was also an incredibly hilarious debacle as one pig got loose and we ended up having to hunt it down with a rifle before it got onto highway 66 with a USDA inspector running along behind. Now that's free range.

Our latest endeavor is our new Wangus cattle. My family has been raising cattle in Texas for a few years now, and have now crossed the Angus with thier first Wagyu bull, Mr Moto (hey, they get names if you don't eat them). Last Tuesday, that first crop of F1 weanlings arrived in Virginia to continue their very happy and grass-fed lives on our farm, along with our new Wagyu bull, Mr Briggs, and 2 Jersey cows. All were delivered safe and sound by a young, well dressed, Asian trucker named Earl. I'm sorry, that's funny, and I'm sure he thinks it's funny
too. It's so fun to look out and see the cows out there roaming and taunting the dogs. We're working on getting them stroller broke. Almost got Mr Briggs to come up for a head scratch yesterday, but Dimple chased him away. Hunting dog extraordinaire.

On yet another note, I'm almost 32 weeks pregnant, enormous, awkward, puffy, chinless, and unable to breathe, but happy and still herding cattle with a stroller. James is WILD on a regular basis and I'm actually physically unable to walk faster than him. The dogs seem to watch over him well though. They do have uses outside of hunting season.

So we're clearly overextended as a family, are unable to keep up with so many things like putting laundry away, but we're having fun and hopefully setting our kids up for a healthy future, and it always makes for a good story. What did my sister say during her spee h at our wedding? Oh yeah, something about the road less traveled....

One year ago today,

Oh yes, on April Fool's Day, we were first admitted to the Fauquier County hospital where we stayed a few days and celebrated Easter with our wonderful friends, Annie and Rob, who brought us fried chicken (cause nothin says Easter like fried chicken and some, yes, champagne). The day after Easter we took a lovely ambulance ride down to UVA and ended up not leaving for...a while. Like, well into the following month. Those first three weeks were pretty awful, as many of you know. We endured talks of kidney transplants, dialysis, blood transfusions, watched our poor child have tubes shoved down his throat and have so many IVs they actually couldn't do anymore. We watched cancer patients get checked in, treated, and leave in remission before we were ready to go home. We made some new friends who never got to leave. We also made lasting friends who we will never forget and will always hold dear.

Yesterday we cut James' tube feeds almost in half again so he is getting a pretty nominal amount through the tube. Throughout the day he consumed over 1000 calories in the form of cheese, oatmeal, raspberries, muffins, bread, broccoli, ham, pear, corn puffs, and quiche. And one year ago he quite literally ate nothing.

And apparently this year hasn't been too bad since we are expecting our baby girl in June, although it still seems a little crazy to me at times! We still don't get a lot of sleep and meals are a lot of work, but we have a pretty healthy little energetic boy whom we love more than our own lives for sure! So much to be grateful for and I thank God every single day, even the cruder ones! :)

What a difference a week makes!

Got a couple of videos of the boy eating. The first 2 links are really one feeding session from last saturday the 5th that I sent to an OT for evaluation. The next is from this sunday the 13th after spending Mon, Tues, and Wed at KCRC and cutting back the tube feeds. Apparently I dress my kid in the same stuff all the time. In the first feeding session, he probably consumed one to two tablespoons of food total. In the second he ate an ounce of veggies, and ounce of mac and cheese, and some Funyuns (hmmm, not sure how they spell that) in less time than it takes to finish an entire tube feed!

Last week:
http://www.youtube.com/watch?v=u3Blynjb5eU

http://www.youtube.com/watch?v=rYNNacV9wCo

And now:
http://www.youtube.com/watch?v=XoT6IYJAS3k

And yes. He needs a haircut. Badly.

Big breakthrough!

Yep. Haven't said that in a while! So we're back from just 3 days at KCRC and I have to tell you, I wasn't expecting much. I was terribly frustrated at home this past month and was actually ready to start looking for different places to go. Really, I knew I was possibly overreacting (what?!) as I had all these thoughts running through my head and hadn't actually had a chance to speak to Polly yet. But it was keeping me up all night every night, which honestly I (or James) don't need any help with. But I was pleasantly surprised. WAY pleasantly surprised.

We showed up Monday morning, and just walking to Polly's room, which is attached to the cafeteria (handy), I blurted out in loud and rapid Langmade form all my concerns, the different places we were thinking of going, and everything I was freaked out about, whilst waddling with a gigantic pregnant belly. Hey, if anyone can get away with it, I can. People ooze sympathy around me! ;) Aaaaaanyway, Polly was great. Of course she was. She's been doing this for over 20 years and designed the entire program for UVA. People come from all over the country. Honestly, she does know what she's doing. I guess my biggest fear was that because she has a certain way of doing things that have been successful, that she might not be super open minded. But she did address every concern I had, came up with a plan very quickly, implemented it, and damnit all Helen Anne if it didn't work!

So here's what we are doing for the next month with close monitoring on James' weight:

He will get breakfast and dinner with a tube feed, but his other 2 to 3 snacks plus lunch will have no tube feeds. We have a couple of forks running at the same time loaded with food that he can choose from plus obviously forking things himself. We have to encourage lots of fluids and sometimes have to give just some water thru his tube at the end of the day. The hunger really does motivate him to chew. He hasn't gagged once and I can actually see food getting chewed up. And who wuda thought the highlight of my day would be seeing ABC food?! Used to to ally gross me out in elementary school...
What he eats:
Broccoli, cheese, bologna, other sandwich meats, fish, cereal, muffins, bread, carrots, pasta, beans, hot dogs, crackers, chex mix, fruit loops....offhand I can't think of anything else, but you get the picture. Now, he's eaten all of this at one point (except bologna---as I've never eaten it before, I had no idea it was a texture I should try--he loves it. Weird.), but never in any volume. At his last lunch he ate an entire slice of Kraft cheese, 1/2 slice bologna, a mini muffin, a tablespoon of avocado, and hull-less popcorn puffs. Crazy. I still have to coach him through it, but he's very willing, asks for more, and we don't need to distract him with Mickey just to get him to eat. He's starting to recognize hunger too! Yesterday in his last session at Kluge he didn't eat much. Just wasn't super hungry. So I put him in the car to hike home. After 15 min, I was going crazy with him flipping out about some toy that was 'broken' that wasn't broken and I was getting ready to throw it or myself out the window, when I realized he was hungry. Now this seems like something most parents of an almost 3 yr old would know, but I don't! He has never before shown a sign of hunger that I could do anything about. But we pulled over at a Starbucks so I could get my much craved hot chocolate, pulled out our new fav mini muffins by Entenmanns (50 cal for a teeny tiny muffin and they are moist and tasty- although I'm totally never allowed to eat one, or four). He ate 2 1/2 muffins and halfway through he told me that it made him feel all better and made his crying all better. I almost cried in Starbucks, like they didn't think I was weird enough!

The other thing I asked for help with was my own education on how to feed a kid. I've never done it. I have no idea how to feed a kid normally or how much to expect them to eat and feel good about it. Most parents don't chart how many milliliters and calories their kid intakes every day. Part of healthy eating is learning to pay attention to your body's signals for thirst and hunger, and that's clearly so important for kids to learn from the very beginning. But as parents, we train our kids for that slowly, and we learn how to do it on the fly. Most of you have never thought of it before, but of course, everything we do affects their future somehow, and just serving meals is one of those things. So we decided that we need to slowly 'demedicalize' our family. I thought it was a good term. It'll happen slowly, as we do still need to chart calories and fluids and weight, but it doesn't need to consume us forever. That's a really hard thing to do! But for now, the tube weaning is a big undertaking that does require vigilance and perseverance and now that we've started, we're not turning back. I say this so that my friends out there who might be wanting to get together outside my house for playdates or fun get-togethers...or who might possibly have given up altogether, well, I'm still not leaving. Lol. Because I'm tired and done-for, yes, but also because we (especially James) have so much riding on the next few months and the consistency of therapy in-home and at doctor's offices to successfully wean him from the tube directly into independent and functional feeding. I actually just read an article on oral and tube feeding on www.new-vis.com that said the first thing to be sure of when you begin a tube wean is the parents readiness to take on the commitment, and if they are not quite ready for whatever reason, that is okay and it's best to delay a little until all the pieces are in place. But we're really ready. Really.

So obviously these are amazing breakthroughs. We're certainly not done yet, but where most kids his age have had almost 3 years learning to eat, James has had about 6 months of food learning, preferred by 18 months of just tolerating food near him. He's a pretty miraculous kid to maintain his good humor through all this. Plus Tom just told me that when our kids are grown, I should never feel guilty or ashamed if I decide to do nothing at all. Ever. I totally plan to take him up on that. It's gonna be awesome!

Next step

Wanted to do a quick update since we met with the OT last week. Denise was great to come out and evaluate James and our house to set up a program for the next month. I think she was particularly fond of the dog bed that James sleeps (sort of) on. The key for the next few weeks is to work on building strength and getting more input into his hands. So we have a big obstacle course set up downstairs that is pretty fun, I have to say. We do wheelbarrow walking everywhere and lots of weight-bearing activities on his arms. It's amazing to see how tired it makes him but he has a great time. We have also gone back to the brushing protocol which I do think helps. It is just yet another step in our day before each feeding but does seem to calm him down a bit, once you wrastle him into it anyway.

I've been concerned about James' sleep pretty much from birth. :) But while it has gotten a little bit better, nothing seems to help. And I have asked everyone. We've tried all sorts of calming techniques but he still wakes up screaming and is restless, and then so tired during the day. He is tired at night, but just can't physically soothe himself or stay asleep. Now, I have been taking him to KCRC for almost a year now and each time his sleep is discussed and never really addressed. They've given me the same ideas everyone else has, so I figured we would just have to deal it with as time goes on and he gets older. Now I find out they have a whole sleep study center there! Really?! No one thought that might be helpful knowledge? Lol. Okay, I should have done more research, but still. So anyway, we will try to get a consult when we are there next week and hopefully a sleep study done. It could turn out to be nothing, but we've gone through every other sort of frequently awful testing to rule out different disorders, so why not a relatively simple look-see into what's going on overnight before I lose my marbles? Just a thought.

But I'm really looking forward to next week at Kluge as I've been increasing frustrated with the lack of progress at home. But I really think that can be contributed to the fact that James is ready for more 'detail' work that I am not knowledgeable enough to undertake without help (my business major was clearly a mistake---who knew?). So we'll see what they come up with to deal with me...er, James...and go from there. But I can promise that if I'm not satisfied with the answers, i'll keep scouring the Internet for new ideas or doctors or diagnosis that our current doctors love when I conjure up (whatever, I'm totally right 95% of the time).

Right now my main concern is that when we go stay at Ali's beautiful farm in Charlottesville, I'll have to explain that the kitty is STILL in Florida, unless Mama Kitty can make the flight on the private jet real quick.....