Monday, June 24, 2013

Almost Three Months of Blending

It's hard to keep the blog fresh and new when there isn't too much freshness or news happening! Which, in terms of blending a diet for Hank, is a GOOD THING.

We did have one little 'incident' recently happen that we had not experienced up until this point...

I recently made three blends to put in the fridge. Didn't freeze any. The ingredients were nothing funky or new. The one common denominator worth mentioning, that for some reason is lingering in my brain as the 'culprit,' is sweet potato.

Here's what happened.

Blended everything up. Smooth. Nice pale peach color. Put all in fridge.

As we like to pre-syringe for the next meal, we noticed that when we went to feed Henry, and uncapped the tip, the cap practically SHOT off, as though under pressure. And then the blend would continuously ooze out the tip, at a slow pace, but continuously. We've never had this happen with any other blend. Some drips, yes. It was the oddest - AND MESSIEST - thing. Ron and i were brainstorming. As far as our noses could tell, nothing was bad when added to the blend. And Hank has not reacted in a bad way to anything.

So even til now, it's a mystery. We're just really excited that we're DONE with that blend.

I made a blend last night using watermelon, and those blends are always super liquidy and easy to plunge. I even sometimes add a little more 'less hydrated' fruit to make up for all the water in the watermelon. I told Ron, pairing watermelon with avacado would be a good match. Avacado is a thickener. There is nothing worse than a too-thick blend. Makes for hard plunging, and more waste having to be wiped up.

Happy Blending!!!

Wednesday, May 29, 2013

All is Well...

It's been a few weeks. No news to report at this time, really. What's happening is - we are truckin right along! Same ol' same ol'. I never did make that photo entry detailing the steps, nor the video. The idea is definitely not gone - just hasn't happened. Yet! Oh that crazy TIME - - always getting away from me.

No more cracks in the syringes. I'm sure it was direct contact with the FreezPaks. Also, no more constipation. Or if it seems he's not gone in a few days, he figures it out pretty soon. Have not gone FOURTEEN days like we did with a med change.

Have not noticed increased nasal sucretions with the addition of milk, so milk, for now, is a go. That is helpful. We are getting a LOT of it, through WIC, and it's a good liquid base to every meal.

Had a check up appointment with Hank's cardiologist about a week ago. As he was running thru the list of current meds, i kept saying "nope, not anymore." Finally he said, "what?... not even Peptamen Jr? Is he eating by MOUTH already?" I explained the blended diet switch. Dr. Miga was nodding happily and saying, "well, clearly it's doing him GOOD. This is the best i've ever seen him in his life." And that is true. Unfortunately, Hank's oxygen saturation levels were at their lowest, but that is due to his heart, not his diet. Corrective surgery options are currently being discussed and in as soon as two weeks, may know a "Game Plan." I'm not jumping up and down about this... but i know it has to happen.

Funny story to end on: I had a bowl of my closet caps (now deemed SYRINGE caps) sitting in hot water near the kitchen sink. I went to turn the hot water on, and hit the bowl in JUST the right way that all the caps and water swiftly poured right into the drain! BROTHER! And we have a pig, which had not been turned on in a while, so i was pulling out gunks of foodstuffs along with a random cap. I think i got em all. Yuck!

A note about cleaning the caps: I do not clean them all the time. In fact, if i give Henry a feed, and refill the syringe right after i'm done, i just recap it. But if they've been sitting around, i do pour a bowl of HOT water (not boiling, though that might not be a bad idea) and a little dish soap (natural) and stir em around and let em soak. Then i drain, and take q-tips and clean each one out. It's meticulous and a little time consuming, but it assures that all residue is removed - it can HIDE in there!

......... Turns out i DID have stuff to say. I'm rarely at a loss...

Til next time....

Monday, May 13, 2013

Mini Update

Hank got weighed the other day. No, not naked. And yes, rather quickly, at the ENT no less, but STILL:

He weighed 32.2 lbs.
[And he's a hair from an even 3 ft. tall.]

That's approximately one pound MORE than when i started feeding him a blended real food diet on the first of April!

What i guess is sorta noteworthy here, despite the informal method of weighing him, is this: Henry would go MONTHS AND MONTHS with no weight gain, or occasional loss. Now, it's one pound GAIN in one month.

Turns out Hank, at age 3, only really weighs about 8 lbs less than my healthy and vibrant and able-bodied almost-five yr old Thom.


I'd say he's doing pretty good. Ayuh!

Thursday, May 9, 2013

Syringe Cracks!

So of the 25 birdy syringes i ordered online, 5 of them, already, in less than a month, have bit the dust.

I need to clarify...

ONE came cracked upon arrival. In the shipment. I thought "oh, that's a bummer," but things like that happen, so i wasn't too torn up. I did keep it, and the hand-signed (!) packing slip, planning to write to the gal and request a new one. No big whoop. Wasn't RUSHING to do that.

Then, as i got them back from daycare, i noticed a crack in one about once a week. The WAY i find out is kinda funny: After i've washed them, and reinserted plunger, i go to draw up another 'dose' and it doesn't go past the crack. NOW that i know that means a crack, i get it. But when it FIRST happened, i couldn't figure out for the life of me why it wasn't drawing. It's not like the crack is that noticeable!

Then it occurred to me one day, while putting the massive FreezPaks in the insulated bag: Maybe the syringes are cracking because they are resting right next to the FreezPak and it's too cold!!

It's what i've got so far. It hasn't happened since i removed that system. Now, instead of packing two big ones, i pack one smaller one wrapped in a papertowel. The gals have said they are making room for them in their little fridge (too). Which kinda bums me out, cuz that is why i bought the insulated bag, so save room in their fridge for OTHER stuff! Oh well.

Moral of the Story (I think): Don't keep syringes cool by sticking them RIGHT NEXT TO FreezPaks. It may crack them.

I still might try to get my ONE originally-cracked syringe replaced. Hey - that's two bucks! ;-)

Wednesday, May 8, 2013

Cow's Milk

Well, i caved. I started using cow's milk in the blends.

This is not a HORRIBLE thing. Remember, i only suspect a milk allergy, not intolerance; I've not had any sort of medical test done to prove or disprove either. Although, as i type that, i should really do a little more research. I'm only using those terms because they make sense in my head, but in having a recent conversation with a friend, there was some confusion on what i MEAN, and i had to clarify.

TO ME, i mean:

Milk Allergy: causes allergy symptoms, like stuffy nose, congestion...
Milk Intolerance: causes gastric disturbances. Gas, bloating, cramps and discomfort.

So now i'm going to look it up and do some actual research and see if i was right or at least onto something with MY terminology...

(in this area, imagine the Wayne and Garth flashback wavy screen, indicating time-lapse (oops... is this reference too dated for some of you readers?...))

Okay. So here's what i found, off the LiveStrong site (out of about 3 or 4 quick pull-ups). Click on it for full article.

So i was right!

Anyhoo - - i've added milk. Why? Well, for a few reasons. The predominant one being cost. All these other "non-milks" as i'm calling them - almond, rice, hemp - their price adds up. And for the quantity i use in a blend, i'm plowing thru. Maybe i should do further research on what options to add in the DAIRY section. Right now, i'm mostly set on milk, yogurt, and cheese (cottage and hard). I have NOT yet introduced eggs, though i think that is coming next.

Another reason, to be honest: We are already getting WIC for Thom, our 4 yr old. Hank is still eligible but has been off of it due to only eating formula, which is: 1) only covered til the age of 12 mos and 2) was being covered by our health insurance anyway. Now that Hank is eating real food, we could really use the help of BUYING said real food. And a large component of that real food is MILK. They give us almost TOO MUCH, but i'm not complaining.

Hank has been super congested for about a week now. Sans milk. Probably just a seasonal cold and/or allergies. I'm gonna see how he does. If i feel the congestion is just way outta control, i'll find another route to travel down... It's a bit of a conundrum, really. :-/ Sigh.

I think that's all i gotta say about THAT.

Monday, May 6, 2013

Aw... Our First Bouncing Cloggy

That's officially the worst blog entry title ever. You're welcome! ;-)


The Tube Clogged.

Those three words are, from what i hear, what many excited-to-blend newbie parents hear as a deterent for NOT blending a diet for their formula-fed tubie kiddo. The dreaded clogged tube. Like an explosive. The end of civilization as we know it.

I never had to personally hear those words because - well - so far, there is not a medical ANYONE that knows what i'm doing. Yet. They will. But i plan to go in there (whichever "there" it might be - there are so many with Hank) with 2+ months under my belt, with living proof that it rocks, and then any deterents they might toss my way will fizzle into dust before me.

[OOoOoooOOOhhh... With that last sentence, i'm thinking of drawing a new Super Hero, named BLENDIE, or something like that. But no cape. (watch Pixar's The Incredibles for why)]. :-)

Daycare called right after the end of his morning meal saying they were unable to get the last 20 mls in. He's been congested (which i now think is total coincidence and not related) and that he started wretching a little. I asked them, over the phone, to try a water flush. In the past, some of his blends have been thicker than others (i try to avoid that from now on) and while plunging the food was nearly impossible, a water flush was not. A good indication the tube was NOT clogged. We hung up with that game plan...

They called back to say the water would not go in either.

So, unsure of really what was happening, but detecting a clog, i left work (LOVE my easy-going, understanding Wegmans!), ran home to get 1) a new button, 2) a button syringe (5 ml) and 3) a new extension tube. Figured one of those three, or combos therein, would do the trick.

Right off the bat, i changed his tube. Brand spanking new one. Flushed some water. Easy breezy. At that point, i'm almost POSITIVE it was the extension tube (which i believe is 99% of the reasons for clogs - stuff gets snagged right at the little opening). Went to the sink and when water would not flush through the tube, i blew HARD (yes, with my disgusting bacteria ridden MOUTH - ha!) on the button end, toward the port end. I think i popped my ears a little. Sure enough, some gunk cleared (did not see a seed or an actual THING other than thick food) and was able to flush tube with water. I cleaned it real good and put it in the "stash" of Hank Supplies for if/when this happens again.

I suggested to the gals that changing the extension tube, should this happen again, be Option 2, actually. To FIRST take the syringe, with water, and do a little "plunging" back and forth action. I likened it to plunging a toilet clog. Same notion. Dislodge the clog with muscle.

I wasn't at all worried about this clog. It's our first since starting all this 1+ month ago, and was a completely harmless one. I am fortunate in that Hank has a BUTTON, which can come out. And our extension tube COMES OUT. I realize the PEG system is not as easy, and what is a simple clog to me might not be so simple for those folks. :-/ And the whole G-J tube thing... might even be worse. I'm SO SO GLAD that Hank got rid of that G-J tube eons ago. I hated it the minute i saw it.

So that is that. Another obstacle arisen and knocked down. No big whoop.

Wednesday, May 1, 2013

Pop a CAP on Yo Syringe!


I'm willing to bet i'm the only one ever to utter those words so excitedly! I even peeked in the little bag and talked to them gently, telling them they are loved in their new home. Ha!

Soon, i will do a comprehensive post with a ton of pics, from Start to Finish. Maybe even a video or two! That'll be fun to do!

Monday, April 29, 2013

Complete Tubefeeding

Here is a much better link to Eric's book that i've referenced earlier in this blog. I continue to reference it now; I like the feel of a paper book - to flip to the appropriate page...

Click on the book to go to the link
Also, in other news, i wanted to share another "hidden" revelation I had while blending. I'm calling it hidden because i've probably read about this 3 or 4 times in other sources, but it finally kicked in, in my own brain, while I was blending for Hank. Sometimes i have to "do" to understand stuff.

If i need to make the blend less thick, i could either add water (which i've done a few times - and is the easiest), or i could PLAN more accordingly while choosing my foods.

For instance - i cooked up some tri-color pasta. I know that pasta is a "thickener," but went about adding ingredients as usual. Needless to say, the blend came out thicker than usual. Instead of using yogurt and an apple, i could have used more milk and apple juice.

There is also a product i noticed in our Nature's Market section of Wegmans that i thought could help folks who are dealing with volume-tolerance issues (that is, they need the calories/fat, but cannot handle high volumes of food). It's from a company called Super Sprout, and they are fruit and vegetable powders that are 100% said fruit or vegetable! I was thinking about the blueberry one, since i've read that blueberry skins tend to be the clogging culprits. They are a little pricey, though, and I'm cheap... so we'll see. ;-) I love what they are about though.

Friday, April 26, 2013

Freezing Blends

Props to Artist Reed Black
If there are any seasoned blenders out there reading this blog, i picture them sitting with their coffee and scone and having a good "guffaw" over my newbie experiences and blunders. That's cool. I bet those scones are yummy!

The other day i made four blends. Froze three. Later, took one out and put it in the fridge to thaw. Well, it didn't do that. It was pretty much still a rock after 12+ hrs when i needed it soft to syringe for the next day.

I did something i won't do again. I broke it up into chunks and put it back in the blender. My thought was that the blades of the blender would help 'warm' it up, as well as, obviously, blend it back to smooth.

While it DID mostly do that, it also did something weird, which others' might have foreseen happening but i didn't. It 'chunked' up some fatty sections. It made this smeery goopy mess on the sides of the container. It was like a part frozen, part pasty mess of oil. Just gross, and really almost impossible to get blended BACK into the blend that was smooth and creamy and beautiful before it was frozen.

I've read that blends can change their viscosity and such upon freezing. Certain foods don't freeze well, and then to mix them with other foods... could get ugly.

[Lemme clarify here that i put all my blends in a large Ziploc freezer bag. The idea is to freeze them flat - - except they MOVE after they get in the freezer and end up in lumps and crinkled jumbles, but whatevs...]

So today when i needed a blend, frozen like a rock, right outta the freezer (cuz clearly putting it in the fridge to thaw ain't workin'), i filled the sink with hot water and laid it in there. Changed the water about three times, all while helping and kneading the bag. I was doing other stuff too. Within i'd say 15 min, the blend was right back to how it went in originally, and i cut a little hole in the corner of the bag and squeegeed it into a bowl to syringe. Worked great. No weird consistency issues, or oily lumps... looked great.

So i'm getting there. I'm guessing within a month, i'll have this down to a pat. The other day, when i made said mentioned 4 blends, i made them all in an hour. That's way faster than the first few blends. :-)

Monday, April 22, 2013

Just Thin It!

Okay. Well, that's a little embarassing.

The solution to the post before this one is simple: Just Add Some Water! My blend was too thick. I added about 2 cups in the blender, dumped the Goodness (although it was goopy, but not "that" goop) back in, and blended for about 20 seconds.

Ahhhh... much better. Smoother, easier... i no longer am getting finger charlie horses.

Ron brought up, however: "Now that you are adding water, you are increasing the volume, but not the calories. So technically you should add more mls to each sitting." I told him i didn't really mind. A little extra water was an okay exchange for a few lesser calories.

It's occurred to me that it'd be fun to get Hank on the scale with me, maybe tmw morning. See where his weight is compared to his starting weight of 31 lbs...

Saturday, April 20, 2013

Resistance is Futile

I'm not even a Star Trek fan, no matter what generation you're thinking, but i do know that phrase. Guess it was all my engineering buddies at Alfred...

Anyhoo - i hit some massive resistance feeding Henry last night. The plunger simply wouldn't plunge. I tried my knee. I tried brute strength. I even got my 7 yr old son to help by holding the med port shut while i pushed mercilessly with two hands.

That resulted in his blend projectile splattering out the main port and onto the floor, sofa and nearby stool. Given my already-emo state, i started crying, and the 7 yr old tried to patch things with solutions the best he could. Poor bugger. And Henry could care less.

For the record, before said two-handed grunting plunge, i checked everything, thinking clog. Used a water flush - smooth as silk. Checked tube. Golden. Checked for sticky syringe - OF COURSE NOT! --> i'm using my new birdy syringe which glides like Fred Astaire and Ginger Rogers (okay, this is getting dumb now).

Out of frustration, i laid Hank on the changing table (of which he still fits on, miraculously (it's one of those industrial ones that daycares' use, that we got at the ReStore!)), and studied things closer. I began plunging again and while i was receiving total resistance on the muscle end, i could SEE the food traveling thru the tube, consistently and steadily, into his belly.

This is a phenomenon i have not read about. Why would it plunge with such resistance, but still be going in steadily? I'm not sure about this one. If you are reading this and know the answer, please take the time to post a comment! :-)

Thursday, April 18, 2013

In One End...

... Before you finish that sentence, first, let's have a look at the blends i made today:

So two things worth mentioning in this post: 1) "... And Out the Other" and 2) a note about tolerance. Let's do the latter first.

I had been wondering about Hank's tolerance times. We started him out rather "slow," plunging at a pace of about 200 ml over 30 min. Each meal, we moved it up a little, and eventually got to about 12-15 min. That is comfortable for him.

One night, i was distracted. I was a little behind in Henry's dinner (which is usually around 6:30). I think it was 7:30, and the kids were being crazy, and my mind was not entirely on the speed of pushing Hank's meal into him. Very quickly, i noticed he got kind of limp and started wretching. That was a clear sign that i might have given him too much too quickly. And thru the Power of The Belly Button (in this case, the Mic-Key g-tube button), i was able to suck 60 mls of it BACK out. That brought him immediate relief. I looked at the clock and i may have given him 120 mls in about 5 min. That's a little too fast. I have seen footage of kids taking all 200 mls within minutes, or the speed it takes to plunge slowly and change plungers. Hank's not there. We're not in a race. I'll gladly keep it to the 15 min mark. That WAAAAY beats over 45 min on the pump. Duh.

So. A quick note about bowel movements, if you will.

Henry's are the kind NOW that grown men high five each other about. I have even known some of these same men to take PICTURES of said b.m. with their cell phones and send to one another (ladies, i apologize).

It's. CRAZY.

They're big, firm, stinky - - well - a normal poop, these days. It's just so WEIRD. We're so used to these little greenish ones that are mostly smeery. Not these days. Ron called me on my Girl's Night Out just to go on and on about the intensity of a recent one.

So that's that. My boy is eating real food, having real poops, and is doing GREAT. I feel so good to have made this decision. Such a no brainer.

Wednesday, April 17, 2013

This Kid's Eatin' GOOD!

Two recent blends. This is some good eats, yo.

My Glass Slipper

There is a common misnomer that we only use 10% of our potential brain power. That has been debunked a few times, but i would say in general, we probably, on a day to day basis, don't use as much of our brains as we probably should/could.

Yesterday was NOT one of those days. I felt like freakin' Einstein when i got done making the following discovery. Those of you in my boat will exclaim, "GENIUS!" (well... might, i should say. I don't wanna let my head get too big). I have not seen the following 'invention/discovery' on any of the blended diet sites, especially those concerning syringe feedings.

Lil set-up: As noted a few times around the internets, these feeding syringes (most commonly sized 60 cc (or 60 mls, it's the same)) often come without caps. And especially the o-ring syringes i just ordered (ican'twaitican'twaitican'twaitican'twait). No caps. I didn't see anywhere caps for these things. Or if i did, they only came with other syringes.

Now, if you are feeding from home, in general, i suppose most people might not even need caps. They probably only need 4 or so syringes TOTAL, too, and so that is that.

But i am sending Hank to daycare, and it is not a special needs' daycare - it's a regular ol' daycare. With regular ol' kids in the same room. And i have been in constant communication with them about HOW STREAMLINED can we make this syringe feeding. The concensus, prompted by me, was to syringe an entire day's worth, which means 10-12 syringes, requiring caps.

One Blenderized Food for Tubies FB participant mentioned using the wire caps you screw on the tip of spliced/twisted wires. I thougth THAT was brilliant. I'm not exactly sure which caps she bought and/or the kind of syringe she had, but while it worked miracles for her, at a super low price (a bag of 100 at Home Depot are only ~$4), nothing about that scheme worked on my end. The sizing was weird and wrong, and the fact that there was an internal metal screw area inside the cap didn't work attaching to the catheter tip of a plastic syringe. Oh well. I kept my receipts.

So i sat in bed with my husband yesterday, while he was putzing around, and i cranked my brain cogs at a healthy speed. There had to be SOMETHING! I was thinking "rubbery." Something that could stretch over the tip, but wouldn't stretch OUT. I kept thinking that plasticy material that... that... what the hell is that stuff CALLED?! You know - - that plasticy stuff that makes up the ... cap... you know... that come with those closet organizer things!


So i sprang to life (i don't usually "spring" anymore, which is kinda sad. I need to do more stretching) and moved clothes aside to pull off on of those caps. I quickly ran to the nearest syringe and popped it on and...

Too big. Too loose.

I was feeling a little defeated. But i went on Google anyway. Put in "closet organizer cap" and came up with this scene.

It's only AFTER the Google search that it occurred to me that there are TWO SIZES, and i had merely plucked the larger of the two.

More springing off my butt (!) to get the smaller size and .......

VOILA!!!!!!!!!!! Fit like Cinderella's glass slipper!!!!

I ordered a bag of them on Amazon (mixed sizes: 60 small (what i needed) and 24 large (garbage)) for $6.52 free shipping!

I had just conquered the world. (ha!)

<-- Cuz here's what i've been doing as an alternative, which has been wasteful and taxing on my fingers: Using cheap fold-over sandwich bags (not ziplock - think OLD SCHOOL baggie) and those little plastic hair bands for little girls. Fold bag over tip, wrap with hair band. Tedious. Annoying. But kept the food from leaking outta the syringe, so necessary/helpful.

I cannot WAIT for my non-sticky birdy syringes to come in which will go nicely with my closet caps.

Serenity now!

Monday, April 15, 2013

♫ Movin' Right Along... ♪

Quick: What movie is my Post Title from? (Answer at the bottom)
So yeah - the blending is doing just that: movin' right along. Second Nature. Old Hat. All those good cliches meaning that we're in the zone.
Here are a couple blend combos i've done. Again, nothing overly creative. Because I'm naturally NOT a cook, these are pretty simple. If my hubs were to get his hands on making a blend, Hank would be "eating" in a 5 star restaurant!
Couple notes about the above blends:
  • After cutting up red sweet pepper, i did not measure it. That's close enough for me to being 1.5 cups.
  • I've been advised to COOK broccoli, as to avoid gas. Proabably a good idea. (Broccoli, at least raw, made the blend STINK like cut grass. Very earthy. But whatevs.)
  • I did not find any problems with the blender handling the strawberries in the yogurt blend. Ya know, the whole SEED thing, with clogs, etc. Now, it wasn't a WHOLE strawberry... i'll venture to that at some point.
I've got flax oil that i still haven't tried. I've also got coconut milk to try. Remember, i'm staying away from MILK. His congestion and boogars continue to be at a minimum. So i might be right!
This week, i've got marinated chicken that i'm going to make for the fam, and Hank'll get some too. I've also got some couscous to cook up.
I should mention here, maybe even just for myself and documenting, that i've personally been suffering some pretty nightmarish reflux. "Silent" reflux, if you will, because it is not your standard heartburn, that feels like you're having a heart attack. No, this shit pools at the top of my throat, causing a constant chronic "throat clearing," and one night, i awoke feeling as though my throat were literally BURNT. Well, hell, i guess it WAS, in a way. Damn stomach acids.
So i've amended my diet greatly. Massively elimating fats and fatty foods, eliminating my beloved seltzer water (carbonation aggravates reflux!) and chopping out caffeine, chocolate - all the damn good stuff! I am feeling better. I'm munching on fennel seed and almonds in between meals. And Hank is also getting one capsule of 100% ground ginger root per blend. I added some to my husband's homemade oatmeal this morning, for me, and it was DELICIOUS! (Ginger kicks reflux's BUTT!).
They stink. Plain and simple. The rubber is breaking down fast. I'm very lucky to get 3 days out of a stash. I cannot WAIT for my birdy o-ring syringes to arrive!!! I may, however, have to buy another mini stash between what i've got now and when those arrive. They are about $1.30 each. :-/
Onward and upward....
(Answer from the top: The Muppet Movie (1979))