Tuesday, December 20, 2011

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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Thursday, October 6, 2011

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!

Saturday, October 1, 2011

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!!!

Thursday, September 1, 2011

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!

Tuesday, August 2, 2011

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!

Saturday, July 30, 2011

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.
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!

Thursday, April 28, 2011

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....

Friday, April 1, 2011

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! :)

Sunday, March 13, 2011

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:


And now:

And yes. He needs a haircut. Badly.

Thursday, March 10, 2011

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!

Thursday, March 3, 2011

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.....

Wednesday, February 23, 2011

Sometimes no news isn't good news, it's just no news.

I'd love to be able to post that James has made incredible strides and we're ready to wean from the tube in March like we'd hoped. Well, he has made incredible strides, but, you know, over the last year. We had a really good plan for the past couple of months, but now we're sort of treading water. I felt we needed to increase James' tube feeds again so he could gain some weight and recover from winter colds and travel. Plus, whle he is eating more than ever, he is just starting to transition to realish food, which doesn't have as many calories as puurees and certainly formula. I plan on reducing his tubes again as soon as I feel he's chubbed up a little. The downside of increasing the tube is that he is not as interested in the food, which makes developing his skills more difficult. It's always a little give and take. But I don't feel we can stop using the tube until he has the necessary skills and is feeding himself. Got a ways to go for that. We still have issues with gagging and not chewing effectively. We seems to have a hard time sensing and then manipulating the food in his mouth. That's, obviously, where the sensory stuff comes into play. We are working on a new plan with an OT at our house (i've convinced her to drive an hour and a half so she can work with James at home and see how he really is---and by convinced I mean pleaded, guilted, and promised to pay anything), and possibly shorter and more frequent trips to Kluge, as well as a possible Dallas trip to see Jenny.

For a while I felt an urgency to get him sleeping properly and eating before the new baby (who is a GIRL!!) arrives. But as I've been trained so well over the past couple of years, I've let that balloon go. I really don't give a shit. :) I don't care who sleeps where as long as they sleep and I don't care when James starts eating as long as he does! Sorry to say that this little princess will not have a little pink nursery set up. She'll sleep where she needs to and we'll go from there, day by day. But I do promise we'll have lots of other pink stuff. See? Low expectations...er...no expectations.

We had a wonderful trip out to CA recently to see family and go to my beautiful cousin's bridal shower, since we likely won't make the wedding in July with the new baby coming in June. It was great to play with cousins (James' and mine!) and see sunshine and warmth! For months James didn't want to play outside. I was actually getting a little worried until I realized that maybe he's just kinda reasonable. Who wants to go out in 16 degree weather. Ever? So the week of daily 75 degrees really helped us out. Coming home to 46 degrees was awesome too. So James once again loves the outdoors which means I can huff and puff my ass around all our hills pushing the stroller so working off this baby weight later isn't such a huge shock. Also, having a little color on your chipmunk cheeks and double chin really does make it look better. Really.

I'll continue to post more as I know more! Until then, keep us in your prayers. We need all the help we can get!!

Tuesday, February 1, 2011

He likes some stuff!!

People frequently ask me if there's a food James really likes. I have to say, I've never felt particularly charitable answering this question over the past two years. I mean, the answer was no. Cause if he liked something, he would freaking eat it, right? And until 6 months ago, he ate absolutely nothing. Then he started eating some yogurt and we've progressed from there. But I can't say he liked yogurt. He ate it because I asked him to and fed it to him. He tolerated it. Still does really. But it's like my sister says: they're not potty trained if they can't do it all by themselves. He may eat some food now, and it's wonderful and heading in the right direction, but he doesn't actually do it himself, so it's really just a replacement of the tube. But finally, FINALLY, there are 5 things he will ask for repeats of. Shredded cheese, Cheezit Gripz (they are pretty tasty), toast (go figure), ketchup, and broccoli. The kid loves broccoli. I mean, I love broccoli, for for some reason I think it's way weird how he likes it. Says it's salty and bumpy. Wonder how he'll feel about it someday when he finds out it doesn't usually come drenched in olive oil or butter?

Thursday, January 20, 2011

More updates

I feel like I'm always having to do big group updates! But I guess that's exactly what I'm doing, so that's normal. Things have been good with James. Some days am so encouraged and some days I burst into tears at church after he's vomited everywhere. We're a work in progress, what can I say. When I look back on 2010, clearly we have a lot to be thankful for.

Last year at this time James weighed about 19 lbs. Today he weighs over 25 lbs. Last year he only drank a bottle and only when he was sleeping. Now he won't touch a bottle but eats: cheetos, cheese, yogurt, fish sticks, French fries, juice, ketchup, cookies, oatmeal, pasta. Not too shabby. Now, before I get a bunch of disgustingly optimistic phones calls, it takes 30 min to eat 5 cheetos, he can maybe eat 2 fries plus half a fish stick in that same time, he drinks 1 to 2 ounces of juice per day, I have to spoon feed him anything spoonfeedable and have to monitor the whole process each time to make sure he continues to eat, chew, swallow, etc. Still, such huge steps. It truly takes all of my time, if any of my friends wonder why I rarely go anywhere. He has 5 feedings per day, which consist of a tube feed during a small oral meal. Each meal lasts about 30 min, not including setup and cleanup time. So we have breakfast first thing, then we run around for an hour and a half and play and try to get him to digest well, then we have a snack, same run around time (while attempting to do normal housework as well), lunch, nap, wake up and run around for 30 min, snack, run around, bath, dinner, bed. So it becomes difficult to drive any length of time to fit in the feedings properly. Basically when we decide to go anywhere, I sort of consider that day a wash. Especially considering that we live a little far from...well, stuff to do with kids. We have discovered an awesome indoor kids pool about 30 min away and have been having lots of fun when not battling colds!

We had an awesome Thanksgiving with my family and Tom's mom here. It was so nice to see James be able to play with the big boys and keep up, rather than being sick! It helps that my nephews could not be any nicer to him. They are some of the best boys ever!!

We spent 2 weeks in Dallas over Christmas, since we haven't been making our monthly therapy trips anymore. We got to see James' Dallas therapist one night and it was so wonderful to catch up. She continues to be so helpful with tips and suggestions and a friendly ear. We will be heading back to KCRC in March for a few days and hope to jump forward with more progress. I'm still really hoping to have James self feeding by June, but who knows. I don't think we'll still be using the tube then, but I'm not sure how quickly we can develop the skills that are instinctual for most kids, and that they've also been working on since birth. It's a whole other ball o' wax to start learning when you're 2.

That's pretty much my year's recap! I will continue to update as things happen. We are really just staying the course right now, so there's no major, big announcements, which I consider a very good thing!! In the meantime, James is very happy, healthy, and doing/saying new things every day. It's hilarious and we are loving every minute!