I am still blending all of Kanyon's food. It is amazing what will blend with a little whole milk and butter (we're having to count calories, so the more the merrier!). I could list some of the foods, but I'm afraid people would be gagging while they read. The magic bullet is going strong, but one of my blade parts broke, so Mindi had to come to my rescue and let me borrow hers.
We weigh all the food and how much he eats of each thing and I send it to the Dietitian at Our Children's House at Baylor and they count up the calories to make sure he's getting enough. His goal is about 1000 a day.
At breakfast, lunch, and dinner, he is offered 2 foods. One "main dish" and a side. He eats about 130-140 grams of the main food and about 50-60 grams of the side for a grand total of 180-200 grams per meal. He has a snack in the afternoon that is usually about 110-120 grams of something like pudding, applesause, or maybe fruit/cottage cheese. This is the toughest for me to find a variety of things for him.
He drinks at each meal, but this isn't going so well. We've tried EVERY SINGLE cup on the planet and even an open cup and we're back to the Honey Bear. He just blocks everything with his tongue or teeth. Ughh!! He will get about 15-30 ml per meal from the bear, but that is obviously not enough fluids. He gets drinks throughout the day out of his bottle. He will take anything at anytime out of the bottle. Can you believe I'm saying that. 2 years ago I couldn't even get him to open his mouth for that thing!!! Obviously our goal is to get on some type of cup or straw, but we're having to be very patient. We'll get there one day (at least that's what I keep telling myself!). He is usually fairly pleasant during his meals and will play and be distracted while he eats. Some meals are a little tougher, but all in all, he is pretty agreeable. The most annoying thing about it is that I have to be there the whole time and be 100% engaged in it. I can't just feed him and walk away or do something else at the same time. It is quite draining and I have to say that the second I finish his supper I feel very relieved because I'm through feeding him for the day!
He still gets 8 oz. of Pediasure at night before bed. Mostly for the fluid, but the extra boost of calories help too. Not sure how long we'll do this, but I figure we'll have Pediasure on hand for a long time to come.
This isn't totally food related, but sort of. He's always been so aversive to people putting things in his mouth that we've never been able to brush his teeth. We couldn't push it because it would interfere with what we were trying to accomplish with feeding. Well, I'm happy to say that now we can brush his teeth!!! He does pretty good (some days better than others) and even on the bad days, we can still get it done. We don't do toothpaste....baby steps people...but we'll work our way to that. We are just glad because SHEESH we break every single tooth rule in the world. 8 oz. of Pediausre from a BOTTLE right before bed. Yikes! At least now we can wash off some with the toothbrush. And we still use some sealer stuff that we put on his teeth every 3 months for extra protection.
Since the Cheeto thing happened, we are happy to report that here has been even more improvement with eating real food. He is WAY WAY WAY more tolerant of things being in his mouth that aren't pureed. He used to gag instantly and usually ended up throwing up because he just couldn't handle it. Now he rarely gags and if he does he can recover 9 times out of 10. Even when he's eating a blended meal and a stray chunk catches him off guard (even the Magic Bullet misses some every now and then) he will sometimes figure out how to chew or will just get over it! We are so happy about this because that gives us a little more freedom to let him try things without fear of him throwing up! So we just keep on trying new things.
Here are some things he will eat:
Goldfish
Cheez its
Animal Crackers
Ritz crackers
Cheetos
chips
apple
grapes
Bread with a little sloppy joe on it (this just happened the other night!)
That is all I can think of right now.
The eating thing is nothing short of MADDENING but we are so much further than we were. I have to remind myself of that often. We're still in a very restricting routine now and I feel the "NEEDED" feeling like I'm nursing 2 kids since I pretty much have to be there to feed them and revolve our schedules around when Kanyon eats. When we go somewhere we have to plan around meals. If someone is going to watch him while I go somewhere I have to feed him first or be back in time to feed him again. I'm glad that Kory (and our moms) can feed him its a huge help. This is a marathon thing though, so we don't expect to just be through with it and be a normal eater anytime soon. I would LOVE to be and hope I'm wrong. But for now, it still pretty much runs our lives. I am constantly trying to be patient and not get frustrated but, as with most things, some days are better than others. So far, we've reached our goals, its just taken us a while. So we will expect to reach our goal of eating real food!!!
On a side note. Kory and I agree that watching him chew on food is about the best feeling in the world. We just smile from ear to ear watching him. Partly because I think he looks funny chewing. Kinda like someone who always wears glasses and then they take them off. You're just not used to seeing them like that. I'm just not used to seeing Kanyon chew!! The other side is just that we can't believe he's chewing. We wondered if he'd ever do it and he's doing it!!! Now our job is to patiently work on getting better and better!
We had an exciting afternoon the other day. I chopped up some apples and grapes and put them on his tray. He was DEVOURING THEM!!! I was so happy. He ended up eating a total of 2 apple slices, 3 grapes, half of a strawberry and 5 goldfish. Then I think he got tired or full but I was VERY happy with that. So happy in fact that I got him on video. This is the first healthy thing he's ever eaten.
This one is for all you health nuts out there:
{side note. I'm obsessed with donuts and dream of the day I can order him one when I can't help but drive through and get me one (or 3) on our way to Windridge. I gave him a bite of one while he was eating his fruit. You'll see how much he liked it.}
Thus ends my self indulgent novel of Kanyon's stuff at 3 years. To those of you that read I hope you don't wish you got those 20 min. (or more!) of your life back. For those of you who didn't. I don't blame you one bit. Happy Weekend!
9 comments:
"Say it... with your mouth." Oh, how I long for the day!!! You told him to, and he just did it!! Fabulous. :)
I am just marveling at how far he has come!! With EVERYTHING!! Seriously, I watched that video twice in a row because I couldn't get enough of watching him chew those apples! And with PEELING on them! Holy moly. Kanyon, you rock. And so does your Mommy... she works SOOOOOO hard for you and is your best assett. :)
That is so cool! I love, love, love that video.....hearing him talk, seeing him sign, and watching him eat......beautiful!
Love reading your updates on Kanyon! You have a cheering section down here in Chile for your little man. He has a pretty wonderful Mommy! Can't wait to read the next post!
I love hearing the smacking and chewing of the apple! Ahh...music to your ears!!!! I love you all! Miss you.
Each of these posts are simply A.M.A.Z.I.N.G. Kanyon is beyond a miracle~ that boy completely rocks the therapy world....his progressions are incredible and are such a testimony to all the hours and hours that you all have committed. I am blown away and can't tell you enough what an inspiration he is!!!! Hugs to you all.
You have to be the best mother ever!!! I have enjoyed these posts so much. His progress is amazing--praise God and kudos to you for your faithful work!!
You don't know me, but I got a link to your blog through a mutual friend here in Montana. Our son is just starting to experience many of the things Kanyon has gone though. I absolutely LOVE reading your updates and all details of what you are going through! You are helping more people than you know!
Hearing his voice!!! My ears were made so happy today.
Jaymie,
I loved reading all about Kanyon at 3 years old. I started reading your blog when he was still in the hospital. He is so amazing! (and adorable too)
Thank you for sharing your miracle.
Pam
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