Wednesday, February 5, 2014

1,000 CALORIES!!!!

Today was a HUGE milestone for Tristan. For the first time EVER in his life he has consumed over 1,000 CALORIES ORALLY!! He has NEVER EVER even come CLOSE to that before!
It seems like I have f-o-r-e-v-e-r been bugging ouR therapists and GI to get on board with me taking a good chunk out of Tristan's feedings at the same time that we start him on Periactin (appetite stimulant.) Both of them have always been so hesitant to try it. They always just want to go slow and simple.. No more than a 10% drop if they DID allow that, but for YEARS it has been, "Let's just wait for him to start eating more and then decrease his feedings." Uh.. no... that just doesn't work. And he's proved that to you time and time again! HE'S FIVE! The longer we just sit here and wait for him to do something about it the harder it is going to be for him to ever wean off of that tube willingly.
Don't get me wrong, I <3 his tubie! He would NOT be here without it! But as far as we know he HAS the ability to eat, we know he can tolerate real foods (where formula he cannot) and we know just sitting on our hands and waiting for him to change ISN'T ACTUALLY GOING TO CHANGE A THING! He's fine with not having to eat himself. So why just continue to sit here and wait? Every single appointment I have been bringing it up that I wanted to push this. I was tired of sitting around and waiting. There was NO WAY he was going to eat when he's being fed over 50oz every single day through his tube - hell I'm sure I probably wouldn't eat if I was being fed that much! So we are ready for
something different.
Right now I am desperately hoping this keeps going in a good direction. I feel like we can loose it at any second and I don't want to let myself really get happy and enjoy what he is doing. I don't want to be crushed when he decides he just does NOT like to eat and would rather have his tubie. He has been on this medication before, and it made him hungry and his eating definitely picked up last time, too... but it didn't stay up there. It didn't take long before his eating decreased and I had to bump his feedings up even more then where he had been. Before we were told they want us to wait until he was consistently eating a good amount before dropping his feeds any. Right now I say NO. I am letting him take the lead on this... if he eats those calories then he is NOT getting them also tube fed to him after. He COULD use some more meat on his bones, which is where I struggle. It would be nice to try to sneak in some more feedings overnight where he wouldn't notice as much just to try to put a few extra pounds on him... but I also know that is sabotaging his eating. I KNOW that means he will not eat as well the next day.. which leads us down this spiraling path.
Tonight I added up all of Tristan's calories
(1,234.64 calories BTW!) and was aiming for 1,800 calories total (which may change after I talk to the dietitian... this boy burns a lot of calories!)... So I told RJ to aim for 190mL's per feeding, which would be 570mL's total for his night feedings (We're currently doing 3 feedings overnight) He wanted to keep put him at 600, and I am pretty sure he got upset with me when I said no, just do the 190 per feeding that I figured. :/ But I don't want to sabotage him like I have done in the past. HE EARNED THOSE SMALL FEEDINGS AND I AM NOT GOING TO TAKE IT AWAY FROM HIM. I know he's just not understanding me right now :/ He's never really been involved with this part of it... Heck, he hasn't taken Tristan to therapy since he was literally a baby and I was still working and he was laid off. So I think he's still back where I was in the beginning the first time we tried to wean some... try to sneak in a little extra, what could it hurt? But it does hurt. And while it may not seem like a big thing to just give him those 30 extra ml's... sure he probably wouldn't really notice just one ounce.... but I can't let myself do that or it will turn in to more.. or it will be just leaving him where he is at for awhile even tho he did eat even more today... which he in turns eats even less since he already had those calories.. then even less... and then right back to where we were before...  Sounds silly, I know, but this is what is going through my head. This has been a battle for years and I cannot let myself, the docs, and the therapists continue to make the same mistakes over and over again expecting different results. Hey, isn't that the definition of insanity?
....Well off to make myself get some sleep. Hopefully tomorrow goes smoothly. Please keep your fingers crossed for Tristan! I see all of these other kiddos that we have known for years getting their tubies out.. and while actually taking out his feeding tube isn't an option at this point in his life it would make things so much easier if he didn't have to rely on it for almost all of his nutrition and fluids each and every day. I want my boy to love eating food! I want him to WANT to eat food! I want him to be HAPPY!

Monday, November 25, 2013

Jeez, I'm horrible

Yep, yet again I have gone FOREVER without updating!
So I decided instead of trying to write a million page long post to try to catch you up and will give you a few posts that I have made to a support group of mine just to give you an idea on what has been driving me bonkers lately ;)

Oct 2nd - Ended up on the weird side of YouTube and stumbled across this: It's Graz. Watching this totally made me nervous and excited all at the same time. Not that I have any plans to take Tristan to Graz.. But tomorrow (now today?) Tristan has a swallow study at Children's. Which means he will be seeing his therapists that he hasn't seen in a looong time. Over a year ago we switched to a different feeding therapist just to see if some "new blood" would help Tristan progress. I'm ready to go back to his therapists that he's had since he was born. When we left they had just started implementing an intensive feeding therapy program which they thought Tristan might be a good candidate for. I think I want to bring it up with them and see what they think now... I honestly think he COULD make some good progress and I'm ready for something to change. Yet it also scares me to death. But I am so sick of this, "We're just going to wait and see. He'll figure it out on his own," BS! He's almost 5 and all I can think of is that they just kept saying that by the time he was 6 months old, a year at most, this would have all been a thing of the past. I'm tired of the astonished looks on the doctors faces, "He's STILL aspirating? Huh. That's weird." and the "So when is he going to get his tube out?" questions.
I KNOW he still aspirates, so I sort of think this swallow study is pointless if it weren't for a good way to see his therapists again and get the ball rolling. I guess they DO need to have an updated study before they will do anything feeding wise anyway. And logically I do know there has been progress with his aspiration. It all used to be completely silent, about two years ago he started coughing occasionally on thins (aspirated on every swallow, coughed occasionally) but never on thickened (even though he was still aspirating all consistences). I don't think he coughs all of the time on honey when he aspirates, but at times he does now cough, which is another huge milestone.... Eating, tho... seriously... he SHOULD be doing better. I think we (hubby and I) hinder him. He knows how to play us and hubby and I are on opposite ends of the field. RJ yells at him and threatens time out or going to bed or losing something else to get him to eat. I get mad, I get frustrated, And yes sometimes I yell, But I TRY to praise him and play games with him... use his magnet board (sort of like doing a sticker chart.. only we didn't have any stickers and we had a gazzillion and one magnets and a little red colored "white" board just for him) and using a timer are the two things that have seemed to motivate him and he'll do great one meal, but then crappy the next three and that trick isn't going to work again for awhile. Having both hubby and I at opposite ends of the spectrum suck. I want someone else to take this on for awhile with a solid plan of "this is how we WILL respond, got it? Nothing else." I want RJ to get off of his ass and freakin' help with this and GO TO THERAPY. I think he's been to feeding therapy with Tristan like twice in his life...? Screaming at him doesn't do shit.. you think that is going to make him WANT TO EAT? We'd have to spend our entire lives yelling at him and forcing it down his throat for that to work. I want Tristan to WANT to eat. I want to put a plate of food down in front of him and let him do the work of picking it up and putting it in his mouth. I want to be able to eat my meal without shoveling in bites in my own mouth as fast as I can in between trying to coax Tristan to take a bite. Every meal is an HOUR. Shit my friends give their kids food and they are done in like 15 minutes. I want him to go to school and go to bed without being hooked up and having over 50oz of food pumped into his body EVERY.SINGLE.DAY!

Oct 17th - 
I give up. I swear every single time we start getting regular respite care again and I can start getting caught up with everything, something happens and we lose them again! Newest girl just lasted like 3 weeks... she was only actually over 3x for about 1 1/2 hours each time. I hadn't really even taught her anything yet!

Nov. 15th - 
OMG. I totally need to gripe here for a minute! So after a few years I finally went to the docs for myself the other day (we've been without insurance since shortly after I had Rowyn who turns 3 in a couple of weeks, so going to the docs wasn't really an option unless it was a life/death thing for me and hubby) So my biggest issue is that I have had constant pain in my hip since I was pregnant with Rowyn. Obviously they didn't do X-rays back then since I was pregnant but I was in physical therapy throughout my pregnancy. My midwife and physical therapist both said that hopefully it was just my ligaments stretching from being pregnant and that it would resolve after pregnancy. It hasn't. Sometimes it gets much worse than others.. like to the point of not sleeping, hardly walking. My hip will also pop out of place at least every few weeks. So doc takes an x-ray and says from what he see's there is some arthritis going on and what looked like past damage (to me it looked like a bunch of little slivers of bone sticking out of the top of my hip socket, and no spacing between my hip joint and the socket all around the bottom.) So my x-rays were finally read by the tech and his nurse called today. His findings were that it's completely normal to have arthritis and have constant pain to the point of affecting everyday life at my age.... I just turned 31.. this started when I was 28 years old. Now.. what I wanted to yell was "BULLSHIT! WTF does he think I am eighty years old?? " But what I actually said was, "No, I have been in constant pain for over three years now. Passing it off as "normal" is NOT acceptable." She said she would "speak with him" about a referral but that he didn't think it was necessary since it's "normal at my age." I'm fucking sorry, but I do not believe for one minute that it is normal to have an arthritic hip and be in constant pain in your 20's! 
Grrrr.... rant over 

More added to that post after someone suggested more exercise to help with pain: Most of the moves that my PT gave me were yoga moves.. and it used to be big part of my life and I even taught for a few years and I know that is something I really need to bump up more - Stretching and strength! I've been working out A LOT since spring, but what I've been doing has probably made my hip worse (especially since the xray showed some arthritis).. I've been having huge issues with weight gain since Rowyn was born and am almost at my all time top weight right now, which I am sure has just further contributed to my pain... But for months I was running 3x per week (worked up to running 5k 3x per week) and doing Zumba for 1 hour 3x per week. Also doing Yoga after running each time (so 3x per week) and some light strength training. I was also was tracking my calories eating between 1,500-1,700 calories per day (same as Tristan gets! lol) - eating a healthy diet, drank a ton of water every day, no soda, only occasional sweets and junk food was rare... Didn't lose a damn thing in all of that time. My body is so damn confused but without insurance I couldn't really figure out what was going on. 
After the Turkey Trot run on Thanksgiving I think running is going to be out.. which sucks so bad.. While I HATE running (seriously, that goes through my mind EVERY TIME I RUN! LOL) I also worked really hard to be able to go that far (AND not have an asthma attack! Go me!) I probably should drop Zumba... which is so fun and I love but is also high impact..  We need a Water Zumba class!... We have a couple of old lady water aerobic classes in the mornings at the Y, but I will have to rearrange my work schedule to do it... but it's also pretty obvious that I need to make some changes since this really is not working.
Nov 16th [this one is a HAPPY POST!]- 
Since about the middle of last week I have been setting a timer for Tristan for each meal (30 min.) and stopped counting his bites (goal has been 13 bites for a loooong time.. He'll have a few good days of hitting it 2-3x per day, and then weeks of not coming close at all.. Super frustrating).. I have been talking to him A LOT about eating more food so he wouldn't have to be hooked up to his feeding tube all of the time. How food gives him energy and makes him grow (which was super funny in Taekwondo the other day, they were asked what makes you faster, Tristan yelled, "Eating all of your bites!!"  )
So anyway, I hope I am not jinxing this, but he has CLEARED his plate for the last three meals!! Dinner last night and breakfast and lunch today!! I am starting to track his calories again and he's had around 500 calories TODAY!!!!! I told him every time he can finish all of his food I will skip a feeding.. since he finished dinner last night I cut out about 300ml's last night. He didn't eat that much at dinner since he has pretty small portions on his plate, but a promise is a promise and I think for today at least it is paying off! We skipped his lunch feeding since he has done so well today. I love good eating days!!!

And now today: Well at least today hasn't been the same ol' boring...
The Pacifica had a dead battery.. Yet again.. (And when I was trying to get the kids to school, of course.) So I throw it in neutral and push it out of the garage (which Tristan thought was seriously awesome) so I can use the car to jump start it. I move the car so it is parked sideways across the driveway so I can connect the jumper cables (FYI there is not enough room in the car for everyone plus it was just in an accident on Saturday so not safe for me to use it to drive the kids to school) and guess what I see under the snow and leaves in our neighbors yard!?!? A little tiny pink bottle barely poking through.. It was Little Miss's baby doll!!! She was very frozen so I put her on the radiator to thaw all of the ice off of her. She is going through the washer next. Lil Miss is super excited! She had to kiss her all covered in snow.. But then she told me to put her in the fridge so she wouldn't melt. LOL.
Laura comes and gets Tristan since the Pacifica wasn't runing yet (THANK YOU LAURA!!!) and after sitting for a bit I finally get it going again.. I let it idle for awhile and then decide to pack up Rowyn to hit the post office and realize we are almost out of gas. I was literally pulling up to the pumps when it died! Had to push it like three more feet to reach. LOL. Since we were there and Rowyn was being so good we got a donut and hot chocolate as a reward 

Also, just in case you were wondering, that super great eating stage didn't stick around. I'm pretty sure I jinxed it by talking about it. LOL..
Oh well.. life goes on.. 

Saturday, February 2, 2013

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 :)