Friday, December 28, 2012

Home for the Holidays

For the first time ever, I spent Christmas away from my family. James has had a series of setbacks in the way of illnesses and some food related stuff and we made the decision just a few days before Christmas to not risk ending up back in the hospital, because we now recognize the signs of that downhill slope. So we thought that if we stayed home and concentrated on really regular feedings and drinking, etc, we may be able to bounce back a little and work on gaining back the pound he had lost instead of...not.
Lots of people have said that it's so great to spend Christmas with just your little family and how it may become a new tradition. Um, yes we had fun. We made the best of things, we had a white Christmas, which was fun. But you see, our Texas Christmases are awesome. We hang out, laugh a lot, eat a lot of amazing food. There's no family drama or tension, despite the family band occasionally forgetting about small children sleeping during an impromptu concert. :) We all genuinely get along. Missing everyone made my heart hurt, and I mostly hated keeping my kids away from family they don't get to see enough and really looked forward to seeing.
But nothing can keep us down too much, and as long as I didn't think too hard about it, we had a great time.
Turns out, 2 days before Christmas, you can get a hell of a deal on a 12 foot tree:

And Target has awesome clearance sales as well!

See, traditionally, we celebrate a family Christmas about a week before the real deal since we are out of town. We did this and opened all the presents the day before we decided not to go. The above picture accurately depicts therapeutic overcompensation. Also, my wonderful mom promptly boxed all Texas presents and overnighted them to us.
And it snowed! Which of course it did in Texas too, and just about as much, so it worked either way:

Let's not pretend this isn't the best snowman you've ever seen. Also, we got TONS more snow than this later. And then the next day. And we will again tonight. I should probably make a new snowman...

We wracked up a solid 4 hours on FaceTime.

Got lots of Daddy time

And only tried to ship them in a suitcase once. Ok, twice.

And fortunately, James has started regaining some weight and seems to be feeling better overall! So we know the right decision was made, and I hope we never have to do it again!!!

Saturday, December 22, 2012

The Dilemna

Since James was born, Christmas has been....hectic. The last thing on our minds has been decorating, etc because then we'd just have to clean it up and I have a hard enough time of that on a regular basis. We do a lot of living day by day around here. We also go to TX every year, so we don't want to put up a huge, live tree that will catch fire on our baseboard heaters while we're gone. Nobody wants to be that person. Don't get me wrong, we do presents, we have a small tree and our nativity scene and sing Christmas carols.
In addition to this, James has never had quite the right frame of mind for Santa. He didn't really understand conceptual things, and really, what's more conceptual than Santa? This is the first year he's sort of understood that Christmas happens on a certain day in the future. Time has been a tough concept to get too. So anyway, we just have never even thought about doing a whole Santa thing. And I don't think that's bad, because instead we talk about Jesus's birthday, which is actually what Christmas is. Also (disclaimer) I don't think your children will be damaged either way. Yada yada. BUT, at school, around other people, reading stories, everyone asks about Santa, and pretty much the kid has never even heard of him! Lol! I think strangers think I'm a mean mom without knowing the whole story.
Now with Eve I suppose we have an opportunity for a fresh start in that department, or we just decide that that ship has sailed. I think we've chosen the latter.
What I'm really trying to say here is: if your kids believe in Santa, and you'd like it to stay that way, I caution you against discussing it with my kids. They're gonna out you.

Rudolph, however...totally real.

Wednesday, November 28, 2012

In the spirit of Thanksgiving

Despite stress and different things weighing on me at different times, I have so much to be thankful for right now. For starters, we could have lost our little boy again this summer, and not only is he still with us, but he's truly thriving for the first time. It requires a lot of daily work for that to happen, but at least we are seeing overall payoff. That's enough to give me hope.
This summer was another rough one, and I'd like to give a special shout out to everyone who supported us, and of course the same for those who have been with us for the past 4.5 years. I experienced help from some truly spectacular people. People who dug through my disastrous desk to find medical records and overnighted them to the hospital in Dallas because that is shockingly faster than they could figure out if they could email. The rifling through toy boxes to find the one special airplane and, again, overnighting it so we could see our little boy's eyes light up. Countless supportive texts messages and phone calls and funny additions to the line of family group texts. Visits from old friends and friends I'd never even met at the hospital, and those gifts that James still treasures when so many other toys and books have fallen off the radar. The care packages and socks I still wear and love. Egg collecting from demon chickens, watering cattle, riding horses, offers to actually take all our horses into training with no doubt you would actually do it!
The manic gluten free-edness (it's a word), the wine, the bubbles, the babysitting, and the endless understanding and driving at least 45 minutes to visit us because sometimes just getting in the car is too much.
You all know who you are and I will never be able to repay what you mean to me.

- Posted using BlogPress from my iPhone

Tuesday, November 27, 2012

All the blog posts in my head...

Oh there's lots. But it seems like every time I have a post in my head, it takes a few days to get around to writing it, then things change, then I have a new post in my head and they get all muddled together, I confuse reality with blog posts, then I have a nervous breakdown...and then the cycle starts all over again. I feel like I might be really hard to live with....
Anyway, here's a recap of the last...while:
Last post I was a bit ho hum about everything. Shortly after that James actually started to gain weight! It kept going long enough that I even told some people it happened. Mostly we get nervous when things are good because, historically, that's when the shit hits the fan. And so I wasn't surprised when he started having diarrhea again. We wracked our brains trying to figure out if he had gotten into some gluten somewhere (our house is now 100% gluten free...we even have some wonderful friends that slice bread and put it in ziplock baggies at home if they bring dinner). But we tried to go out to dinner, where he ate none of the food but did vomit after dinner, at the restaurant, on the floor, while we were meeting a new family....they never did send me an weird....anywhooooo...
Well, I finally figured out that I had switched to a gluten free all purpose flour blend that has milk powder in it. And as the kid eats pancakes twice a day, by the time I made the connection, he'd eaten an entire bag of it. As soon as we stopped he got marginally better. But I feel like, for whatever reason, major damage was done. And we are still working back. We tried out some new pancreatic enzymes, but for whatever reason, they seem to officially make things worse. I feel like if someone could put together all the 'for whatever reason', we'd get somewhere. But apparently they can't.
So now we are coming back from the 'milk powder incident' AND the 'pancreatic enzyme incident.' sigh. But I'm thinking things are looking up. He's regained a little weight, which is mostly fluids. Because "for whatever reason", he just doesn't absorb or retain fluids normally.
All this stress makes me a super crappy mom, unfortunately. I start to stress more about his eating, he feels it, and I feel like we butt heads several times a day and I go cry in the bathroom. But then alternately he does something he's never even attempted before and I didn't even know he could do, like climb up a fence to pet a horse.

Or have fun hiking and climbing

Or climb a tree with his friends

Or decorate a Christmas tree

Or help out with the cattle

Or I watch his sister do things I had no idea a kid her age could do

Anyway, as I write this I'm reminded that things certainly aren't all bad and we are getting by with sense of humor intact. And probably I should keep posting because evidently its pretty therapeutic!

Sunday, September 23, 2012

At the risk of sounding offensive

I have a small rant. And I'll apologize first because, while I've never cursed on this blog, and I rarely curse anyway, it just doesn't work without. I used to have the worst language ever. I'd like to think I've grown as a person, gained more intelligence, and my children have made me a better person. Most likely though, I just have a stronger filter now.
Anyway, here's my rant.
I fucking hate it when people tell me how small my child is!!! I mean, come on! I fucking know how small he is and have basically spent a collective year in hospitals trying to fix it. Do you think I've been making this shit up all this time?! I guess it may seem cute to you, but it's like twisting a frigging knife in my chest every time you say it.
Now, that being said, there's pretty much no one I've ever met that hasn't said this to me at some point. And I understand in the first meeting, you usually say something about a kid's size or appearance. Probably we all need to branch out a little and talk about something else, but I get it. But maybe the next time you see him next to a 2 year old and you think to exclaim how cute it is that they're almost the same size...Just. Fucking. Stop.
Thank you. Also, James is going to be a ninja someday, so you may want to watch your back. ;)
- Posted using BlogPress from my iPhone

Thursday, September 13, 2012

One month gluten free

Hard to imagine its been so long! We hit the ground running when we got home and I'm just now coming up for air. Or, at least, there are some surface bubbles. James has started back at SMILE and it's wonderful. And Eve is SO enjoying walking around the house and terrorizing everything.

So, gluten free. It's not just the food. You need a separate toaster and cutting boards. You need to make sure there's no cross contamination. And gluten is in SO many processed foods. Even ketchup. It's a cheap binder and anything that says artificial coloring or flavoring has the potential to have gluten in it. And then even if you go out to eat and pick a 'gluten free' item, the chances of cross contamination in a restaurant kitchen are pretty high. Now, we don't go out to eat much and I make most things myself. But it definitely takes away pretty much any chance of convenience, even just going to someone else's house. Especially when you're just getting started. Also, premade gf items are widely available now, which is great, but they are crazy expensive and definitely not all created equal. Many things are harder or chewier, which definitely tires out James' mouth. But he's hangin in there. His stomach remains much less bloated and his appetite is better. And while that is fantastic, he has, really unfortunately, lost weight. And he's eating well into the range of recommended calories.
We are not really sure of the next steps. So far the doctor wants to wait and see what happens. Probably if anyone says that to me again, I'll punch them. But as he's in Texas and I'm in VA, I have to do it via text, which doesn't hold the same clout. Bummer.
So we have a little good and a little bad and, apparently, we will just see what happens....

But here are some cuteness photos that usually make everything ok!

Eve 'helping' drive the truck to pick up hay

We found a local air show!!!!

Nice to be back with my pups!

Watching the air show. Coolest kids there, clearly.

My daughter.

Helping with farm chores!

Monday, August 27, 2012

A Shot in the Dark but pointed in the direction of home!

We have a flight booked home tomorrow! After a MONTH AND A HALF...seriously.

And an update is long overdue. I've been meaning to add all this, but I kept waiting for more info. I'm gonna be waiting for a while though, so here goes.

We have no actual diagnosis.

The End.

Just kidding. Sort of. There IS no diagnosis. But it's not the end. Pretty much, any test result that HAS come back abnormal, no one knows how to make sense of it. And everything else is "normal". The one thing of note is that on the celiac gene test, he rates very high on the likelihood of developing celiac. Now, people can have this gene and never get it, and he's tested negative on every other celiac test out there. But because it is LITERALLY all we got, that's what we are going with. Strict gluten free diet and environment. This is tough with any kid, or anybody at all, but it's really hard with a kid who has feeding problems and textural issues. Which is why we've never done a trial of it in the past. But things are clearly bad enough that we have to embrace it. It's hard though cause he's not diagnosed with celiac disease. No one else knows this, so I could make things much easier on myself and just say: my son has celiac disease. But I don't like to make things that simple. Too weird. I like to, instead, go into a full explanation of the past four years to unsuspecting strangers who don't really care and will think twice about being nice to people in the future. I'm doing my part.

So for the past 10 days or so James has been properly gluten free. It takes time to see results, but yesterday his abdomen was noticeably less bloated and has stayed that way.

We stopped using TPN last week and that was a little rough in the weaning department. He had low blood sugars that he couldn't express and felt pretty crummy. Fortunately (I think?) he has a diabetic mother well versed in low blood sugars, so it was very easy for me to recognize and treat. His diarrhea was continuing though, so I made the executive decision to take him off the pancreatic enzymes and then text the dr later. He may still need them at some point, but I was fairly certain they were a problem. We also started giving pectin, like the stuff you use to make jam? It really helps. So weird and simple. Anyway, he is worlds better.

We did suffer setbacks in the feeding and sensory department that will need to be dealt with. He mouth seems a little dead and lazy now, and he displays a little less interest in food. But I've gone back to smaller meals and spoonable foods in between for calories. He lost weight coming off the tpn, which is completely normal but you hate to see. The thing is, we have to continue to balance physical health, mental health, and sensory therapy. We've worked really really hard on his physical health this summer, but to do any more is to risk his mental health. It is time to go home and regroup, relax, recharge. And remember some normalcy.

So it's with a slightly heavy heart I return home. My sister calls it happysad. :) We've learned a lot and ruled out a lot of scary stuff. We are stronger and more grateful but also frustrated.

When we first met with Dr Semrin in July, he listed off a few possibilities and said he didn't want to scare us. I said not to worry. Nothing was scarier than what was in our heads. He then asked what was in my head which was funny because it's a scary scary place, but also because no one else has asked me that. Which was why I froze up a little and stuttered out not the answer I meant to give, because I couldn't put it into words. I later told him:
What I'm so scared of is never finding anything out, and going through this over and over and over again until we can't help him anymore. At the time, I really never dreamed we'd be no further along 1.5 months later, aside from extra pounds due to iv nutrition. It's so hard thinking that's where we are and I feel defeated and exasperated. But also, I'm homesick and miss my husband and I KNOW that James will get better at home, eating our amazing and nourishing food and playing all over the farm!
Please keep the prayers coming. We just aren't done yet, but we will keep on keepin on!!

This one eats clams. So weird.

Helping let the chickens out with FaceTime


Attack baby

Thursday, August 16, 2012

The Old Me vs The New Me, Which Equals....

....a lot of conversations in my head.

Back in the day, in my youth (because I anticlimacticly turned 30 and also because I've aged significantly this past month, AGAIN), I rode horses, a lot. Okay, so one of our businesses is still riding horses, but I have rarely had the chance the past fours years. But anyway, I was pretty good and undoubtably could have a gotten a lot better. What I was really good at was riding querky horses. Like querky 'don't move a muscle while riding or else you will rocket into space' type of horses, not like querky 'I'm so lazy I live in my parents basement'. Those I don't tolerate so well. I loved riding racehorses and could, for the most part, sit quietly while they performed all sorts of tricks underneath me without really caring. And I especially loved riding this crazy boy here:

Case in point: I'm riding here with only 2 fingers holding my left rein, because my little finger broke on a racehorse's neck when he was goofing off. Also, this is actually a big jump. Jake just made everything look puny and unimpressive and the Leo in me just can't let that go.

Anyway, I would like to say that this ability of mine is due to raw talent or intense training or really anything other than the fact that I don't have reflexes. Seriously, when I go to the doctor and they hit my knee, nada. And if Tom tosses me the car keys, they bounce right off my forehead before I even blink. So it could look like I'm calm and collected on a wild 2 year old, but honestly it just doesn't occur to me to react or be particularly scared until a few minutes later. And later, I'll be scared and shaky. When it all hits me. I think this is why you do want me on your side in a true emergency. I will stay calm and get it all taken care of. Just don't give me too much time to think about it. I'll F it up then. Or put me on a horse you have to actively kick. I'll F it up then too. But weird random emergencies...I'm your girl.

This horse was later put down because it hurt a jockey so badly and was just that crazy and dangerous, and my guess was inbred or something. I had to hire a neighboring barn's lead pony just to get me up to the track and back. It could buck at a full gallop.

I loved teaching horses to break from the gates. Another good time to not move a whole bunch.

Okay, so I now find myself a parent (so weird) and so many circumstances are completely and frustratingly out of my control. That laid back and non-reactive nature has been pushed to the limit. To combat it, this crazy, scheduled organizer has entered my personality. Now, that could be good, except it's an unpracticed, crazy, scheduled organizer that's invaded. That's just stressful. Fortunately, on top of all these stellar qualities, I also internalize with the best of them, so I think my children are thus far unscathed. Tom will never be the same. Lucky man.

Somehow, at least in my head, this relates to a fun day we had this week. Tom, Eve, James, and I went down to Fort Worth to visit an old friend of mine I'd always stayed in touch with but hadn't actually seen in around 10 years. We've tried to meet up in the past couple years, but each time James has gotten sick ad we couldn't travel. We were supposed to head up for a visit the day after we were admitted to the hospital this time. On a fun...ish twist of fate, Sean had a show down here and we were stiiiiillll heeeerrreee.
I was all worried about too much heat for James, not only because of sweat and the PICC line and all, but also because he typically gets either hot or cold really quickly or hungry and wont eat or has to go to the bathroom but wont or something and then the whole outing that was supposed to be fun just sucks and then I never want to leave the house ever ever again. That sounds super selfish but really it's the whole family and big picture and just reality.
I had this little trip planned with what time we'd get there and what time we'd leave so we could get James back in time to hook up to tpn at a certain time so that I could unhook him at a certain time in the morning, blah blah blah. But we get there and Sean's phone had run out of batteries so we had no clue where he was on an 85 acre show ground and James was asleep in the car and Eve WASN'T! After walking around we stumbled across Sean and the fact that the whole frigging place was air conditioned. Then I realized I'd been riding in the wrong horse sports my entire life. THEN I realized that you can't cut a visit short after 10 years, especially when the story telling is just getting good. So we stayed hours after I had planned and came home and everything was fine.
That almost sounds like a dumb story that wasn't really a story until you read: everything was fine. It was Tom who pointed it out when he said, "wow, that was really fun and nothing bad happened."
It's hard because it's a false sense of security with the tpn, but we are catching glimpses of a more normal life and, most importantly, glimpses of who our son really is and wants to be. The next step is how to keep him.

I never imagined Sean holding any baby, let alone my SECOND baby, let alone having his OWN baby. I feel so grown up.

Thursday, August 9, 2012

Home away from home

I actually had a big ol thought provoking post written out yesterday, but when I went to stick a video on it, the whole thing crashed and disappeared. Sooooo, that was about the extent of my motivation. Instead I'll paraphrase and pop up some functional pics and videos because a picture is indeed worth just about a thousand words. :)
We are at my parents and while it is not home, it's a far sight better than the hospital! After the first night when our TPN supplies arrived with NO INSTRUCTIONS WHATSOEVER!!!, I think I've got it down. It's nerve wracking to have to inject all the additives to the bag, spike the bag, hook it all up, keep everything sterile, not send anyone into cardiac arrest and whatnot. I may not be the smartest person in the world, but I'm definitely not the dumbest. And presumably they send all kinda of people home with this stuff. It's a sort of comfort...hmmm.
Anyway, we meet with GI next Thursday and, again, presumably they will have the final test results and, hopefully, some sort of direction. Please pray for an answer! A treatable and/or curable answer if we are allowed to be picky.

Here's what we've been up to!

Facetiming with Daddy. We miss him so much!


YouTube Video

As usual, there are no words. Who's daughter is she???

YouTube Video

Sweetest boy. Kids are amazing.

Medical takeover of my poor mom's pantry

Sunday, August 5, 2012

The Loooooooongest Weekend

Weekends haven't ever really been the same to me as to most other people. They are typically the most busy in the horse world, with either competitions or clients off their regular jobs and wanting to ride. Mondays are our days.
In keeping with that theme, this weekend has been fairly torturous. We really are just here while they perfect the TPN levels and make sure we are good to go home on Monday. I've been training up on the TPN and PICC line and continue to feel pretty good about it. Another thing the horse world has prepared me for! But otherwise, it's given me and James a lot of time to think about how we'd rather not be here. He's actually burst into tears a couple of times asking to go home. And hopefully nothing gets in the way of tomorrow!! I haven't packed and wouldn't let my mom take anything back to her place. Bad juju and all.
But I have been thinking a lot of those families who don't get to go home. Because as much as sometimes an episode like this can strengthen your faith in God, I can't help but think about the other families who pray just as hard as I do, who are far better people than I am, and their child doesn't walk out that door with them. It's hard to stay blindly positive when some kids recover and some don't and you can't see the rhyme or reason to it. We leave tomorrow (theoretically) but we leave with a catheter to James' heart just so he can absorb nutrients and grow. Where do we go from there? And how long can we hang on until they can figure it out? And if they do figure it out, will there be treatment, or is this it? Not trying to have morbid thoughts, but this is my reality right now and it's scary. I have this extremely vital, energetic, brilliant little boy and he can't sustain himself using one of life's most basic functions. It's staggering to think that not that long ago, we wouldn't have made it even this far. And while I believe in my heart of hearts that he's going to be okay and they are going to figure this out, I also can't help but think that everyone thinks that way and it just doesn't always happen. I don't care if it's now or ten years from now. Or 20. I just don't want a limit like that.
Leading to a lot of these thoughts is that when you live in any hospital, but especially a children's hospital, for any length of time, it's like prison torture. Bright lights, beeping, freezing cold, no one let's you sleep, crappy food, zero privacy, and you hear children screaming All. The. Time.
I'm about done with that. And I feel like it was about 3 weeks into the UVA visit (we will have been here 3 weeks tomorrow) that I had a similar breakdown where I just couldn't stand the crying kids anymore. It's heart wrenching to hear the pain or the fear. I think the fear is the worst and it's so evident.
Our bright note here is a little girl we met who has been here 8 weeks. She got an infection from a stomach surgery and all kinds of complications, and Monday she will have been here 2 months with her mom, while her dad and 2 sisters are home. I LOVE this little girl. I know she's going to be just fine because her spirit surpasses anyone's I've ever met. She hasn't been allowed to eat in over a month, and will hopefully get to try this week. She wants lasagna and if I didn't think it would make her sick I'd go right home and make her one. She reminds me SO much of little Paris, our friend from UVA who didn't make it, and if Tina is reading this, you'll know just what I mean. If Paris got to be 4 years old, and somehow became Pakistani, this would be her. And it gives me some comfort. So please keep this little girl and her sweet mom in your prayers as well.

The other bright spots in my day follows:

Thanks all!

Thursday, August 2, 2012

A plan!! (but don't get too excited)

Well we have a plan! It's not the most inspired or even fully informed plan in the world, but it's the first dang plan we've had. Today James started taking pancreatic enzymes and we will see if it helps. I have started PICC line training which is a little scary to take over full responsibility, but there's lots of nursing help. We plan to go home Monday or Tuesday with the tpn and that's kind of where the plan ends. It's actually a pretty sorry plan.

Anyway, it's all we got. We will follow up after that outpatient and keep 'chipping away at it' as Dr Anderson said. Lovely.

James is happy but missing his sister and daddy. As do I!!

I celebrated my 30th birthday here the other day. Not what I would choose, but my whole family came with amazing Mexican food and a cake for a party in the cafeteria. I ended up missing the entire thing because that's when all the doctors that we had waited all day to speak to finally showed up. But I do think James had an awesome time with his cousins and likely thought it was sort of his birthday too. He asked for an airplane. The following morning Tom flew back to VA again. So I'm totally claiming a do-over. When this is

So while there's still so much we don't know, and some things we suspect but aren't jumping on til there's confirmation, we did finally get confirmation that he is not absorbing all of his food. Two years ago he seemed to gain weight according to how much he ate, which wasn't much. He gained awesome weight on TPN then and now. After he started eating again here, his TPN was decreased to about 50% of his needed calories because he was eating 85% of his total needed calories orally. Initially I was upset they decreased his TPN because he stopped gaining weight and I figured it was because he wasn't eating as much as normal. But then what we realized was he was getting a lot of calories, so he certainly should have been gaining weight. This proves that he is not properly absorbing through the gut! And then this leads to the pancreatic enzymes and on down the line of stuff we don't know yet.

Finally, information is coming in, it's just that so far no one really knows how to put it all together.

Please keep the prayers coming!!

Playing with plants outside.

Eve hugging Daddy in her bday dress!

A real pickle.

Saturday, July 28, 2012

Time flies...or something like that

Wanted to give small update. There's not much to tell, which is astounding. Almost all tests have come back and they are all negative. On Friday, which was the last day for the doc who's been on our case since Sunday, I could tell how frustrated he was. Which is nothing along the lines of how frustrated I was!
We knew this could happen, but what I didn't want was for anyone to give up. Though I suppose it's kind of hard not to when you aren't on the rotation anymore. Dr Kooros's plan was to treat bacterial overgrowth AGAIN very aggressively for a month, do a strict lactose free diet, then probiotics.
So a couple things happened after this was thrown out there as a possibility. First, I started thinking, which is always scary. In a hospital, it also usually means you get pissed off. Well, for me anyway. But they were giving him Flagyl for overgrowth, which is the world's most disgusting medicine. He has to have it 3 times a day for a month. After the second dose, he was crying. And I basically said there's no way this is going to work. I asked for alternatives, possibly IV at least while he has PICC line, but pretty much everyone had gone home, so I got some mean chick who came in and rudely told me they weren't going to give him the antibiotics IV. He had to take them orally because he's going to go home and he'll need them orally. The way she said all this...well, I was pretty close to bitch slapping. I'm not terribly mature anyway and the more time spent in a hospital, the less tolerance you have and the way less you care what others think. I think it has something to do with meeting doctors all day in your pjs. It's just weird. At least I have my diamonds.

Anyway, long story a little less long, I told her that was not a good enough reason and she could go back and ask for a real reason before I'd accept it. But I had no hope of that, and in fact, I never saw her again. In the meantime I emailed Dr Borowitz's nurse after hours asking if they had ideas. She actually emailed me back almost immediately that they had a mom once take the pill instead of the liquid, cut it into chunks, and mix it with jam. Slid right down. So I tried it with banana chunks, and while he says it's stinky banana, he does just fine with it and it's about as painless as it gets! He may end up with a distaste for banana someday, but then we'd be on the same page, so that's okay by me.

Today brought the return of the original GI doc we saw here. Until he came in, I was ready to play along with everyone here, let him gain weight, and then just move on to the next place. But he stepped up. He set a plan in place immediately to get renal, genetics, endocrine, and metabolic specialists involved since GI has pretty much been exhausted, within an hour we had already had a kidney ultrasound and more urine testing done, all of which was normal but needed to be done as a baseline. We probably won't see those specialists til Monday, and they will decide what other blood tests can be done, which is no big deal because they draw the blood from the PICC. Also, Dr Semrin has no problems with us going home using the TPN if necessary, just so we can get ahead of the game. But we will stay and get this further testing done while here cause it just makes sense. Also, it takes a little time to concentrate the TPN to just overnight for us to go home, if that's what needs to be done.
Then if ALL this shows nothing, he will gather results and start sending them out to other doctors around the country, which is the other thing I REALLY wanted to hear. So I'm encouraged that not everyone has given up and there is a doctor showing marked interest in the case. For now, we'll stick with him, unless he pisses us off too. ;)

Here are a few pics of the walloping good time we are having:

Cousin visits bring out the best in everyone!

Wild and goofy.

Um...wild and goofy.

I just want this so badly. Right next to me, right now.

Wednesday, July 25, 2012

Disclaimer: supposed to be funny, not sad, at least not in a crying sort of way...

Traveling to Texas is always so easy. My parents have a pack n play, high chair, obviously laundry, an extra vehicle, convenient access to grocery stores. It's astounding to me, mostly the grocery store thing. Anyway, I don't bring much with me. I bring way more outfits for Eve. But I want to explain how that planning has unintended consequences.

Before we left I had gone to Old Navy for new pjs for Eve. I got a bunch of shirts for myself. Pretty much short sleeve and 3/4 sleeve henleys in various colors. They were all clean, so I grabbed a couple of them and threw them in a suitcase with 2 pairs of jeans. Unintended consequence: I look like a brightly colored Old Navy ad wherever I go, every day.

We had 2 dressy functions to go to while here, neither of which we attended. I brought two pairs of fabulous heels to go with my dresses. Add my ever present cowboy boots, and I only had room for flip flops. Unintended consequence: I'm wearing flip flops in a hospital. Every day. It makes me itch just to think about it.

I brought one pair of socks for James to wear at the airport, and sandals for the rest of the time. It's 100 degrees here every day. However, not in the hospital. Unintended consequence: Aunt GG had to make a Target run.

I brought no socks for Eve. She never wears shoes or socks. We are rednecks. But we are rednecks who don't want staph infections or really to touch anything where there are warning signs about bodily fluids. Unintended consequence: when she comes to visit, she wears James's socks. They never match.

I had a facial from Robyn at Pure Skin Therapy about 2 hours before we ended up here. They are incredible, and anyone near Dallas who wants to know THE place to go, I'll pass on her info. Anyone who has had a really proper facial knows that really you don't look good until about 2 days later. Splotchy. Add crying. Bad news. Unintended consequence: I looked like crap coming in here, now I've been living here, now I need another friggin facial. (On a positive, I did get a supply of her face care products, and again, I have to plug these. Amazing amazing amazing...and keeping me sane.)

I usually travel only with the jewelry I'm wearing. My husband spoils me. I got a diamond when we got engaged (duh), diamond studs the day we got married, a diamond pendant necklace when James was born, and diamonds added to my wedding rings when Eve was born. Unintended (ok, maybe a little intended) consequence: I'm running around in nasty flip flops, weirdly similar daily Old Navy outfits, and I'm dripping with diamonds.

It's how I roll.

- Posted using BlogPress from my iPad

Somehow it's Wednesday....

Today has definitely been one of our best days here at Children's. That's in relative terms, obviously. But James has perked considerably and while not eating a ton, is doing worlds better.

Eve came and had breakfast with us this morning!

So happy to pet his sister. :)

Trying to be as normal as, whatever.

So that's today. Here's the recap since Sunday:

Sunday continued to suck just a lot. That trickled into Monday which definitely sucked more. He went in for the procedures at around 1 and was done around 3ish. Took a little longer than we thought, so I was nervous. What happened is that they have to put air into the intestinal tract during scoping so they can see. Sometimes due to either inflammation or anesthesia, the air gets stuck. The danger here is that everything gets distended, the intestinal walls are thinner, and you risk perforation. So Dr Kooros tried suctioning and doing all sorts of things, but the decision was made to not continue with the colonoscopy. By this time the endoscopy was done and the PICC line was placed. So Tom and I go into a consult room while James was being extubated (there's a word you just never want to hear about your child, FYI) and they start explaining everything that happened, but that he was fine. However, an NG (nasal gastric tube--down nose into stomach) tube had to be placed to allow air to escape until gut started to move. I think Tom's initial reaction to that was absolutely devastated, as those things are complete torture for anyone, let alone someone with an oral aversion and SPD. I got to devastated over the next 19 hours of misery, but initially I was so relieved he was okay. I was seriously scared about him having all this done. Risk of complications are so much higher when you are dealing with malnutrition and I was just terrified. So when the doctors walked in talking about complications, I've never been so afraid. At that point, the NG was just not the worst thing in the world. But, tell that to James. It was awful. Same as two years ago, he basically did not speak or make eye contact until noon the next day when it came out. We spent hours just reading books and trying to make him comfortable, but there just wasn't anything we could do. When it finally came out, we headed to the lab for a sweat test for cystic fibrosis. He has had this done before, but they wanted a repeat test with their more sophisticated equipment and lab. Apparently CF can present only with GI issues in rare cases. The last time he had this done it was basically a piece of plastic taped to his arm with a sponge in it that collects sweat. Then you wait til there's enough sweat. So I'd been telling him all morning we were just going to get a sticker. Well shit if they didn't hook his inner arms up to these medieval electrodes to stimulate the sweat and then wrap him in plastic. On both arms. I think it hurt like a bitch. I felt terrible, cause Lord knows this kid remembers EVERYTHING that is said. Terrifying prospect for our future. Anyway, he came back and slept after some playtime and had a little dinner and slept pretty well overnight. Tom flew back to VA this morning which, um, sucks (theme?), but James woke up a new man! He was hungry and talkative and goofy and his color is 1000 times better. We had to change the dressing on his PICC line, which is the equivalent of cutting off puppies' tails, but otherwise the day was trauma free. We also got moved again to the real GI floor, as they were cleaning up after construction. Bigger room, bigger window, flat screen, play room, and a lovely view of my parents condo building. So close, yet so far away!

So here is what we know so far:

He definitely does not have CF, thank God (it's true we really want a diagnosis, but that's one we really didn't want).
He definitely does have visible and significant inflammation of the small bowel.
Preliminary tests are inconclusive, which we sort of knew they would be, though there is no particular evidence of Crohns, which is good too cause that disease no bueno.
I do not look pretty without makeup.
My husband is a saint. Not a patient one, but a saint nonetheless.

Waiting on the more detailed and specialized biopsy results and some more extensive celiac testing as well. We will hopefully have a plan by the end of this week. My goal is to at least know what's going on by my birthday next week.

One more thing to add to 'things we know':
My goals don't mean a whole lot to these people.

Over and out.

Sunday, July 22, 2012

Making the best of things

Two years ago when we were at UVA for oh so long, we learned a lot. We'd already been to different teaching hospitals, but we became practiced at how everything has to go through different channels, who is who, who to talk to, when to go over someone's head, when to flip out, and also when to accept you're there for the foreseeable future and it may as well not suck the whole time. For instance, you don't have to eat their food. In Virginia, we had Whole Foods and a bunch of great local restaurants. Here we have Eatzies and Nonna's refrigerator...and Poppa's Chardonnay. Vital things. We also learned when to have people visit and when to say no. Most of the time, visits are always good. Because we don't tend to associate with people we wouldn't want to have visit. :). Anyway, we are trying very hard to make this visit as possible. With my family around, this isn't too hard. Someone is always around to visit, spell us, send videos, or do something wildly inappropriate. These distractions are good for everyone.

Starting at noon yesterday, James hasn't been allowed anything to eat or drink. Then when 24 or so hours pass, they will start him on the nasty cleanse drink to potentially have a PICC line placed, and an endoscopy and colonoscopy on Monday. If not Monday, then Tuesday depending on some test results. Please please pray for Monday. We really want to get this all over with as soon as possible. These next few days are just awful, but we are trying to do everything right so we can get every result possible and done correctly. Obviously the big hope is that they find something treatable and then we go from there. It's hard on every parent to withhold food and drink from a child that doesn't understand why, but I just have to say, this is SO hard for parents who jump to give their kid food if they're hungry. Shoot, just to hear him say he's hungry and wants pancakes is usually the best part of my day. So giving him a wet towel to suck on basically sucks wet towels. He's now napping and I hope he sleeps for hours. It all just goes faster that way. Probably I will post again after things settle down tomorrow. Tom will stay a few extra days til we are over this hump. I know he doesn't want to leave any more than I want him to! Today he got away from the hospital for a few hours and I hope he can let down his guard a bit. He's been everyone's rock the past week and we need him to stay that way and not crack!! :)

Here are a few cute pics we've taken while trying to pretend things are normal!

So happy to see his sister!

A little FaceTime when we can't all be where we want to be, which is together! I have to say, the boys are lookin a little rougher than the girls, until....

Eve covered in yogurt. Covered.

Disclaimer: Whitney, you'll probably cry. This is a view from my parent's. That big ray shining down from the sun is pointed directly on Children's Hospital. It's gotta be a good sign, right?!