Where, oh where, oh where have I been?

<3 babies="" br="" my="">

Hiding. That's where I have been. ;) 
Okay, not really. Between the kiddos, feeding therapy, working on the Y's website, TUBEalicious, and the Co-Op, I haven't had time for much of anything. I can't believe it has been an entire year since I have written, though. I have started posts, but never had the chance to finish them so never posted them.. Instead of trying to do a recap of the last year I will just tell you what is going on right now.
We had GI earlier this week for both Tristan and Rowyn. Rowyn is doing great. She is off of her reflux meds and staying mostly steady on the weight charts. GI and I are both happy with her progress. :) Weaning happened more by accident because insurance really screwed us around with getting her meds covered. After being on the same medicine almost since birth they decided they were no longer going to cover it unless we tried something else and failed on it. I was sooo frustrated. They bounced her from med to med to med, and and even though she was failing on them they would NOT cover her Prevacid again like the originally said they would. They kept saying, "No, you have to try this cheaper one first." >:| Eventually I just said enough was enough. I wanted to give her a little time to recover from bouncing between so many medicines because I am sure that just screwed her up worse. And during this same time we were battling the same thing with Tristan. After a fight we got them to cover his SoluTabs again, but then our Pharmacy couldn't get a hold of any at all. So we had to switch to Omeprazole, and of course there was suddenly a nation wide shortage of sodium bicarbonate to be able to MAKE it with.. Poor guy was in so much pain every night. :( He would fall asleep from exhaustion, and then wake up crying over and over. We have his Omep shipped in from a different pharmacy now and after a few weeks of Rowyn having nothing at all she started settling in and sleeping better at night.

Daddy and son :)

Before going to see GI I decided we would bring along another 3 day food journal and told RJ to write down anything he see's Tristan eat and what he was putting in his blends. RJ has been making a majority of his blends at night for the last couple of months while he didn't have a full time job. It was during this that I figured out that he had essentially cut Tristan's feedings IN HALF! Yet he was still getting the same volume... He just replaced the foods he took out with water instead :/ I have no clue what that man was thinking. He told me he SWORE that was what his recipe was (which has been written on a white board on the side of the fridge since we started BD) But, a blessing in disguise... when we checked in at GI, Tristan had actually GAINED weight! He gained! He had been sitting at 33lbs for about a year... On Monday he was 36lbs! :D So, I ask Dr. P what her thoughts were on doing a trial wean on Tristan's tube feedings to see how he did. I wanted to go hard core for a week or two to see what happened (give him only fluids through his tube at night to make sure he didn't become dehydrated.) She wasn't so comfortable with that, though. lol. Not that I was surprised. So what we are doing instead is cutting back a portion of his feedings, and if he can keep his weight up for two weeks, then cut it back again. Last night I cut him back from 1200mL's total to 1,000mL's total (And I must say it was really nice only putting to prefold diapers on him and not having it dripping wet in the morning! lol) Since RJ had already cut his food in half I will continue with that for his calories and see how things go... Keep your fingers crossed! I am sure he wont suddenly start eating/drinking enough to cut out all tube feedings, but it would be amazing if we could.. say... cut his feedings in half. :D I would be ecstatic! 
Well, I am off to pack up orders and sew! Have a great weekend!

Tristan said he was thirsty :)

Food, food, food.

I was going through my old memory cards and found pics from Tristan's first birthday! Here's one of him putting he head over the heater vent at my mom's house. It would blow his hair all over the place and he thought it was hilarious! Boy, he had so much more hair at one year than Rowyn!

And here's my little Booger boy tasting his first birthday cake. I remember for the longest time I was worried that he wouldn't be able to have any cake for his first birthday. He absolutely LOVED it! I wish he still loved food this much. We've been struggling a lot with food. It's so frustrating when he used to love it to now have to constantly find way to get him to take bites. We are changing things up this week. I'm going to start cutting back on his tube feedings to see if we can get him hungry, and hopefully start eating some more food! His feeding therapist wanted us to start doing intensive feeding therapy and cutting back his feeds. I told him I had done what he was describing at home before in the past, with success. Of course that was back when Tristan still liked food. So our conversation quickly went from talking about us being at Children's as often as possible - for every meal if we could - to canceling our future appointments and him telling us to call in with updates. I definitely looking forward to not having to drive up there all the time, but I'm worried how Tristan is going to do this time around. Keep your fingers crossed that he'll decide he's hungry and wants to eat lots of food!!

Lil Miss is STRUTIN' HER STUFF! She walks EVERYWHERE now! And boy is she getting good. One day she just started standing up randomly, then the next day she decided she wasn't going to crawl anymore. She would stand up, walk two or three steps, fall, stand up, repeat. lol. She still falls frequently, but her coordination is getting much better!

She definitely enjoys her food. She's lost over a pound in the last four weeks, tho. I'm hoping it's just because she's walking now, and because she was sick, and that's she'll start bouncing back. The last few days she has been holding steady, so at least she's not going backwards!


I always worry about their weight, how much food they are eating, how many calories... and then there's me. Eating too much. Gaining too much. I guess I am just making up for them. I haven't weighed this much in over six years.. even when I was pregnant. I have an appointment with my midwife in a couple of weeks. I started gaining a bunch of weight just after I had Mirena put in. I'm going to have her take it out. When she put it in my goal was to lose 30lbs over the next year to get my PCOS symptoms under control. Now  I need to lose over 60. How frustrating is that!?


Now that my bronchitis is getting better I am going to start working out again. RJ's doing good with his new job (I love him working in town! No more constantly worrying about him driving in crappy weather and what time he is going to make it home. We see him MUCH more often, too.) He's getting a family membership for us at the Y... hopefully we can make this a family thing! Tristan is almost old enough to start enjoying all of the sports and activities.... Tumbling, wrestling, martial arts... Which should we chose!?

I am making some Feeding Tube Awareness hair bows and flowers! Here's one on Lil Miss. I plan on stocking as many as I can this Sunday @ www.hyenacart.com/TUBEaliciousTushies. And be sure to check my Facebook for sneak peeks as I get things finished! I can't believe Feeding Tube Awareness Week is almost here!

Where have I been??

Awww

Eh, around... running in circles, spinning on my head.. the usual. Ya know. 
We've been doing a lot of therapy lately, and honestly it's getting old. And I feel horrible thinking that. I shouldn't think that. Makes me feel like a bad mom or something. That I don't care enough.  

In his "house"

I'm putting all of this work into trying to get Tristan to eat, to take bites, to chew, then the swallow, it's CONSTANT redirection.. I hate doing it when other people are around, it's hard because all of my attention needs to be focused on him.. and RJ is bad at sabotaging all of the work I have done. It's supposed to be a POSITIVE experience. We're supposed to be making it a fun thing to want to sit down and eat.. Instead RJ spends the time doing other things, not focusing on Tristan at all, and when he does, it's to yell at him to take a bite or to swallow his food. Tristan can hold food in his cheeks for HOURS (even through a nap or two.) It's frustrating... I KNOW it's frustrating.. believe me. I do it over and over every single day, and I have to split my attention with Lil Miss, too... and ya know, even if I do get him to eat something, it really doesn't change anything. It's no where near enough to 

I'm Standing!! :D

decrease his feedings at all. Anything that he does eat is just a "bonus" He still aspirates so it's not like we can even try to wean from the feeding tube.. I also worry about the swelling he's had in his esophagus, stomach, and pylorus... How much of it has really changed? Am I making it worse by forcing him to keep eating? What the hell caused it to begin with? I don't know. The doctors sure don't know. His biopsies all came back as normal, so it "shouldn't" be an allergy to something I am giving him... So it's just random edema that happened for no reason? There's got to be some reason. And I just have trust that he'll let me know when it really is too much. At least he's old enough and vocal enough (OMG his vocabulary! You would not believe everything this kid can say!) If he starts gagging again I will for sure stop all of it. No question.

Two big thumbs up!

So why the hell am I putting myself through all of this when it isn't going to change anything? Because I'm his mom. It's what I do. I just keep fighting for him... I want him to have as normal a life as he possibly can. I want him to enjoy food (because we all I know I enjoy it!) I am tired of the therapy.. I feel like it's all going to backfire if I just keep pushing and pushing him. I want 

"Yeah, I know I'm cute"

him to WANT to eat it. I want him to ASK for it because he wants, too, not because I'm sitting there saying, "Take a bite Tristan. A GOOD bite, honey. Now we chew chew chew! Great job! Now we swallow it! If you swallow it you get a magnet for your board! Yay! High Five!!! Keep going honey! Such a big boy! Take a bite, sweetie! If you take your bites we can play bowling ball! Wouldn't that be fun?? Keep taking bites!" Only that normally takes 3-5 
minutes per bite.......Now repeat.... over and over... for about an hour... three times per day.... and the way we've been going the last couple of weeks I'm lucky if he takes his 10 bites even once per day (or probably more like every couple of days.)

He's been having a lot of stoma pain lately (the opening in his stomach where his feeding tube is.) He was having a lot of pain a couple of months ago, so I took him to the surgeons office (but we didn't get to see the surgeon since he was in surgery at the time.) and they put a new button in. That seemed to help for awhile. Then a couple of weeks ago it started bleeding and was obviously tender. I thought maybe he yanked on it too much or it was because he pulled it out THREE TIMES in as many days! But the pain and bleeding have only been getting worse, not better. :( He even started yelling at me when I went to hook up his feeding a few times... That makes me feel so horrible.
I need a break. Can I get nap? 

You're supposed to wear wrapping paper
on your head, right?

YES! A MACE!

Now for some good and more exciting news... Tristan is now a THREE YEAR OLD and Rowyn is ONE! Tristan loved his birthday party and getting to play with his bestie Erma. :) And he thinks opening presents is the best thing ever. Rowyn has started WALKING! That's right! She's WALKING! She now gets up at random times and just starts trotting across the floor (I totally need to post a video of that.) I can't believe how big she's getting. Speaking of big.. Lil Miss now has a budha belly and rolls. :) She is totally chunking up! Every time I change her I have to rub her belly. Is that weird? lol. I just love the chunkiness! 

It's so awesome when family members can arm
the small children, right? ;)

Tristan's weight is actually doing really well. Last time I checked he was at like 30 percent on the charts. He's never been that high before ;) The blenderized diet has been working wonders for him. I think we've also finally cured the constant diarrhea/pooping problem (seriously.. poor boy was going like 10x per day!) It's crazy that just increasing his grains from 1/2 cup per day to 3/4 cup per day can make that much of a difference, but it does. Makes potty training A LOT easier, too. Oh yeah, that's right.. we're POTTY TRAINING! Most of the time Tristan just runs around naked when we're home. Sometimes we do undies. Sometimes trainers. DO NOT put that boy in a diaper... as soon as he's in a diaper all of the potty training goes right out of the window. So guess what Daddy normally does in the mornings? Yep, puts him right into a diaper. I keep trying to tell him just leave him half naked and it's actually easier. Tristan will run right over to potty when he needs to go. I wonder how a long this froggie potty will be a fixture in our living and dining room? :)




Well, off to bed! I think one of my New Years Resolutions will be giving myself a bedtime and then sticking to it. Also to blog more often. ;)

Brother and Sister's stick together

PS Sorry for the super weird picture placement. I tried to fix it, but I don't think Blogger likes me right now...