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!

Progress Report

Hello all! Wanted to update on our latest week of therapy. It's no secret I wasn't super excited to go the week before 10 people would be staying at my house for Thanksgiving, but of course I'm glad we went! I have to start by saying how fortunate we are to live so close to this facility. The other 'feeding family' there was from Chicago and had to make the most of their 2 weeks before going home. We actually just had 4 days of therapy and will do that again in March. Otherwise Polly is booked until next July. Well I'm having a baby in June, so there's no way I'm waiting to get this kid eating! We hope to start really weaning him from the tube in March.
So our big issues coming into therapy this time was bite sizes (miniscule) and getting him to chew soft food instead of just letting it dissolve or trying top swallow it wole and gagging. First, after noting his weight is soooo good (for the first time ever), we cut down on his tube feeds almost by half. Then pretty much Polly asked him to open his mouth bigger and he just did. Honestly, I'd given up at home. If he took one open mouthed bite of something, I was pretty darn happy for the whole day. Now, he can finish 4 ounces of yogurt in about 20 min. This has actually changed our lives. There is a big difference between 20 min 6x a day, and 45 min 6x a day. Especially when in those 45 min, you're lucky to get an ounce of anything in him.
Then we started work with getting him to take the food in his mouth and move it to his molars to crunch it. You could really see how incredibly hard it was for him to do, but it continues to get easier every day. I really have to coach him through every step. Sometimes I'm staring at him so hard he starts to laugh. Woops! Lol
Crunchy stuff is much easier for him to chew, or anything that makes a sound. But its all about how you approach him. I think training horses has given me pretty good insight in dealing with this (thanks mom and dad). With horses you have to figure out how to get them to do something in a way they understand and also so they can be rewarded in a way they appreciate it. Pretty similar to kids. I got James to chew fruit snacks by getting him interested in how it was sticky on his teeth. Then I finally (finally) got him to stop swallowing whole pieces of pasta, avocado, banana, etc (slippery things), by asking him to spit it out first. I think he. Wasn't sure how to manipulate those sorts of things in his mouth. Course, its still hit or miss. Today he gagged on banana and puked all over. But he did come back and eat more and chew it a little more carefully. Smart kid.
So everything was very successful and encouraging. We came home to a ridiculously fun and wild Thanksgiving where, yet again, I miss out on all the good wine. Psht. Shoulda planned this better. James is napping better and sort of sleeping better. Since changing out the button he is not in so much discomfort, but he still wakes up several times a night. I figure I'll deal with it more after Christmas. One thing at a time. Or, rather, 180 things at a time, but I'm at 180, so sleep will just have to wait. :)

Update a long time coming ---

So I have a lot of catching up to do. I'm just gonna go for it as a quick catch up and then we'll see how i keep up!
James is doing well. He is over 25 Lbs now and that is amazing to see. He talks nonstop and is starting to reason things out, which is a blessing and a curse. :) he still sleeps like crap, but his gtube pretty much bothers him all the time so that can't help. It's a work in progress, like so many things. Over the past couple of months he has lost a bit of interest in pureed stuff, which was to be expected. The key was getting him onto chewing real food before that happened. And we are well on our way. He still does not really chew with his teeth, but mashes with his tongue. Its not because he doesn't understand, but because he is still very tentative about the placement of the food and what happens to it once it is in his mouth. He'd prefer it not to change properties on him. :) But if i dice up fruit into tiny pieces, or cut overcooked pasta and potatoes, he will actually swallow. He has a higher tendency to gag at the texture, so you really have to coach him through it and make sure the pieces are small and the food item is something doable. ITs always a bummer when mom miscalculates. We will go back to KCRC the week before Thanksgiving to cut back on the tube feeds more and work on eating some new stuff. We've pretty much been working from home for a while now and it seems to have been very successful. The process doesn't leave time for much else, but we are muddling through and looking forward to the day when we make dinner and everyone just sits down and eats what they need. I'm not sure what that'll be like, but I imagine it's pretty good!

Scars

Well, I have a ton of 'em. Most significantly are my knee from a canoeing incident and Jake throwing me into a water jump, a pretty good one from the c-section, several oven burns (I'm not sure why I forget it's hot), and two really great ones from the external fixater I had to hold my wrist together. They really don't bother me at all, although once a three year old told me I could cover them up with makeup if I wanted. Thanks. But I have to say, each scar was completely self inflicted, if indirectly. Probably drinking while floating down a river and deciding to 'try the rapids' wasn't super smart. Clearly burning yourself repeatedly on the oven is something only I can manage. You have to imagine that if you ride racehorses for a few years or try jumping horses off of embankments into water, you might come away with a scar or two. And as for the c-section, well, I did get pregnant on purpose, despite the jokes.
But I was looking at James the other day (well, like, every day, but particularly the other day) and I looked at the scars on his arm from the PICC line, and what is going to be a doozey on his stomach someday. It made me a little sad that he'll always carry those scars; I'm not even sure why it made me a little sad, but it just did. I guess cause he didn't have a choice in any of it, and certainly didn't have any fun in the process! I did meet a little girl at the hospital who had cystic fibrosis and she showed me her gtube scar. It totally looked like a bullet scar (or what I suppose one would look like in real life). Her mom told me that when she got it taken out, she walked up to a stranger in the park, lifted her shirt and said, "My daddy SHOT me!!" HA! Think of something to say to that! As long as we all keep our sense of humor...

You're in a chair. In the sky!!

It's very easy to forget that one month ago, James ate nothing. As in...nothing. Now he eats all sorts of purees, including some pasta with bolognese sauce, chicken dumpling soup, and lots of ice cream. He chooses to munch on Cheerios and cookies. Yet I catch myself getting frustrated sometimes (lots of times) when James gets distracted or takes the world's smallest bites (ever). I mean honestly, he only opens his lips. It takes over a half hour to finish a container of yogurt and could take hours to finish 4 ounces of something new (usually if he eats an ounce or so of something new, I'm pretty happy---and it's not cause he refuses it, it's just that it takes FOREVER). It is still enjoyable and rewarding because he is actually eating. And I spent almost a year making food 3x a day that maybe got poked by a finger. So I love making him something new or making homemade ice cream or adding butter to something and actually feeding it to him. But still, sometimes I do want to scream, "OPEN YOUR MOUTH!" lol It wouldn't work, so I just scream in my head. But then remember----how can I possibly get frustrated with this kid?? He. Is. Eating. And I know I wish it was over, but it's not. And it's not going to be for, you know, a while. So I have to take what comes and enjoy what is happening right now, and remember all those other crappy months and think about how great this one was!
The following link was posted by my cousin a while back. There used to be a better version, but I can't find it. Still, it was recently brought back to my attention and it does put things in perspective!
http://www.youtube.com/watch?v=8r1CZTLk-Gk

an eclectic post to catch up

Probably no one is even following this anymore, since I blog so infrequently. But it's not that I don't think about it, I just feel mildly guilty (mildly) for letting Mickey Mouse babysit so I can get on the computer. Especially since Mickey Mouse also feeds my child. But really, he's pretty good.
To catch up though, James is doing very well. He is still eating yogurt and pudding, but has started to eat some sweet potatoes with tons of butter and some other Tyler Florence baby foods. He is no longer making awful faces and shuddering when they go in his mouth, so that's great, but it could take hours to get 4 ounces of something new in him. He takes the smallest bites ever. I have discovered the straw bowl so once ice cream melts or yogurt and pudding turns to liquid (which happens in approximately 15 min, just so you know), he can drink through the straw. I think he gets a kick out of it. I know lots of other bystanders do. I carry it with me to restaurants. I don't know why it works better than a cup, it just does. Maybe because he can see exactly what it is and it makes him feel more comfortable.
We had a checkup with the GI doctors 2 weeks ago and it went really well. He is regaining some of the weight he lost at KCRC and the subsequent illness and looks great. He was showing off like crazy. While we were there we went to visit our old nurses. It's an interesting experience to do that. I had a moment where I thought, 'these people see so many kids come through here, I'll kind of feel like a dork if they don't remember us very well.' Non issue. A few of our favorites were there (sadly not all of them) and we spent a long time chatting and catching up. They were pretty happy to see James looking so good and talking about everything, of course. :) I spent most of the time talking to Donna, who was one of our most regular nurses. She's very good at her job and fun to be around. She was saying how they love when kids come back to visit and stay in touch, but some people never want to walk back into that area of the hospital. But you know, I spent every day and night with these people for a loooooong time. I'm sure I drove them crazy at times, but you do form a bond that is very special. I will always be so grateful to each and every person that helped with James and taught me how to care for him. Donna said it right when she said, "You just can't imagine what it is like to have such a sick child until it happens." Even when you are thankful for a healthy kid, you have no idea just HOW thankful until you feel like you could lose them or have to watch them go through all that pain.

When we were at KCRC, the second week we spent time with a mother and a 4 yr old girl who had a heart transplant. Not heart surgery, A. Heart. Transplant. Wow. Talk about putting things in perspective. She was born without working muscles in her left ventricle. I think the actual transplant happened about 6-9 months ago, maybe shorter time than that. So these parents (who have 2 older kids), spent 3 years in and out of hospitals, basically buying time until Lauren was old enough and there was a donor. Amazing. And she was amazing. You'd never know.
As a final thought, I have to post that I have the most amazing husband ever, and incredible friends. The week after we got back from KCRC, my friend Annie and I decided to have a much needed girls night (mostly, a night with no little boy, but our husbands had to babysit to make that happen, so it became girls night). Annie's pretty smart, and she had the very inspired idea to see if the Inn at Little Washington could take us. Well, they squeezed us in last minute and we went for the most fabulous dinner eeeevvveeerrrr and when asked, several times, what the special occasion was....we got to say, "Um, girl's night!" While we were sipping champagne and nibbling (shoveling) caviar and fois gras, our sneaky husbands were planning an incredible double birthday bash for the next weekend. We spent our birthday (my actual, Annie's a few days later) laying by the pool while the boys set up. Then the local, organic caterers came in with all their homegrown food that I ate at least four plates of, plus had it for breakfast and dinner the next day. Then the 2 cakes came out, the case of champagne (yay!), and very cool birthday wine glasses that never seemed to empty, and votive candles hanging from the trees and fenceline. It has to be the best birthday I've ever had, certainly as an adult! Honestly, I just posted that to brag. I'll put some pictures up later so you can be really REALLY jealous!

The Good, The Bad, and The Ugly

The Ugly totally being me every day after feeding therapy, and especially me after 2 weeks there.

I have been a very very bad blogger recently and there are a few reasons. One, I've already mentioned that I never get on the computer due to the new Blackberry which will not allow me to type in the body of my blogs. I'm also completely exhausted and drained. But also, things really hadn't been going well and I didn't want to talk/write about it. I only like to blog about negative things when they're funny or at least have some sort of uplifting point. Otherwise it's depressing to whoever is reading it and especially to whoever is writing it. I think that most parents can agree that it's never a good day when your kid throws up. No matter how great the day has been, if they puke, the day basically sucked. So when your kid throws up every day for almost a month...pretty much every day of that month has sucked. Depressing thought. So anyway, in order to not bring anyone down with me (except probably my long suffering but wonderful husband), I chose to ignore blogging. I even backed off on the texting and way back on the phone conversations.
We entered our 2 weeks at KCRC last Monday. At that point, James had ceased to put any sort of food in his mouth whatsoever. He wouldn't even touch things that he would at least lick before. He wouldn't even put sugar in his mouth. He threw up every single afternoon without fail. Needless to say, going into feeding therapy, I was pretty discouraged and kind of wanted to throw myself off the balconey (inside joke---probably only family will understand, just go with it). Wow. I'm even depressing myself just writing about it.

BUUUUT...we got to Charlottesville and immediately backed off on his tube feeds and presented him with yogurt to see what would happen. No one, therapist included, thought it was going to go very well. But within 2 days, he was eating more than was going in the tube. I think Tom even teared up while James was eating ice cream. I was in too much shock.

Now, the details of those 2 weeks are fairly unimportant in the grand scheme. We worked on biting and spitting things out and replacing tube feeds with purees. Mostly yogurt and pudding for calories. He's got a loooooong way to go to be eating. If you change certain flavors, he might gag and vomit, any texture causes him to shudder, and he does not know how to chew food and move it around in his mouth. But, for the first time in a long time, he is at least allowing us to present food and willingly takes it into his mouth. 6 times a day we either do a tube feed with biting/crumb practice or we read books and watch Mickey while trying to get 4-5 ounces of puree in him in about 30 min. It is unbelievably exhausting---I can't even explain it. I don't know how these therapists do it all day, except maybe that they are getting paid.

But we finally have rewards and are seeing our boy grow and develop. We even got confirmation that James is actually the smartest kid ever. He has an amazing vocabulary, knows all his colors, and can pick out any animal or body part, even his clavicle (seriously). He has even slept throught the night 2 times for the first time ever.

Amazingly, things are looking up!!