Tuesday, November 3, 2009

This is WAY TOO LONG and there isn't even a picture

Well well well I have pictures to post and feel the need to "update" so we'll see how this goes.
If you don't want to read about feeding, then click on over to the next blog.

The biggest thing is just our new routine here at home with feeding. It has been WAAAAAAAY harder than I expected getting back and implementing everything here at home. It is a LOT of work. It occured to me about half way through feeding camp when Kory said, "Do you feel like your life is about to get way harder?" I knew the answer was YES, but I had no idea. Part of the initial adjustment was simply getting the food made. He eats all pureed foods, but not baby food. So, real food, just blended in the Magic Bullet. Yes, its nasty. They sent me home with a packet of "recipes" but most are canned and kinda processed. I would like to be a little healthier and have more fresh food, so I'm finding the balance with that. The first 2 weeks home I felt like I literally LIVED in my kitchen I was either cooking, steaming, chopping, blending, or dividing portions to store. I was just waiting for my Magic Bullet to burn out on me, but she's still a churnin'! I feel like this part has gotten more manageable. I've figured out the portions better so I'm not wasting as much and I'm able to use some of our meals to blend as well as just getting faster at getting it ready and multi-tasking at the stove! It is sometimes hard to think of stuff to feed him (I find that to be the hardest part of cooking for anyone....THINKING OF WHAT TO DO!) but I'm getting better and this part is getting easier. I have some things in my freezer and I've found some store bought things that are easy to blend and don't require my cooking them.

All meals are supposed to have 2 foods offered and water in his sippy cup. I feed him breakfast which can be yogurt and fruit or stuff like biscuits, pancakes, waffles, or blended oatmeal usually I give him fruit with any breakfast. He hates breakfast no matter what I serve. Lunch is a food food and then some sort of veggie or fruit again. Snack is the only one food thing and it can be pudding, or anything else that is snacky. Supper is food food again like lunch. We still do 2 bottles a day on top of the food. One after lunch and one at bed time. It is amazing how easy the bottle seems now. There are so many times that I'd rather just forget the feeding food and give him a bottle because its so much easier. Who would've ever though that!!!?? Mornings are the WORST, he's just not interested at all. He never has been a morning eater. Those were always his worst bottles and really, in general, the kid is not a morning person.

By the time we left feeding camp, Kory and I had both been trained on the protocol and how to follow it for his feeding times. Its pretty specific and made to be the same thing every time...same words, same reinforcement/rewards, same expectations every time. We have to set a timer each time so each meal lasts 25 minutes. The basic idea of the philosophy is to reward good behavior with good things. Those good things can be toys that he likes to play with or anything that is fun to him (turning off lights, opening the window, etc.) but if he doesn't eat, he can't have those things. That is a very basic explanation and there is a lot more to it than that, but I already write too much, so I'd better not go into any more detail. If you wanna know more, I"ll tell ya more, just ask.

Along with the actual feeding comes the nutrition part. We are still followed by our nutritionist there so we have to weigh every gram that he eats and every milliliter that he drinks. I have to record this and send it to her every week for her to make sure his intake is good. We also have stuff that we measure out and add to his food to boost the calories...ya know, more bang for your buck! This is rather annoying as it only ADDS to the time it takes to prepare, heat, weigh, serve, re-weigh, and clean up, but I'm glad we do this so we can make sure he's getting what he needs. I don't think we'll have to do this long term, but for the time being we will have to keep it up. I'm glad to have them keeping up with this! I don't have to worry "Is he getting enough".

So, how's he doing with his eating???? That has been the big question I get. Ummmmmm I'd say he's doing OK. While we were there, he was a total ROCK STAR! He went the whole time with little to no resistance to anything they did. So, I was only really worried about coming home and MY part of getting the food made, the schedule, what we would do if I had to feed him somewhere besides home (we do have to carry on normal life at some point)....etc. I expected klp to continue on the same path he was on there at the clinic. I'd say he did that the first week and then we started a little downward slide. Its not like he's NOT eating ANYTHING, but he's refusing it way more and I'm finding it harder and harder to motivate him to want to take his bites. I've talked to his therapists and they said its pretty normal for kids to honeymoon and then decide to test the new place (home) or just take time to readjust to eating somewhere besides at the clinic. There, the setting is ideal. Tiny room, no distractions, all kinds of toys and reinforcements at your fingertips, etc. Home is good, but not THAT good! SOOOOOOO this has been quite a source of frustration to me. I feel like I'm feeding him every time I turn around and I'm back to getting a sick pit every time I think about feeding him. I dread every single meal every single day. It brings back feelings like when his bottle feeding was so bad. BUT this is not NEAR as bad, I just can't let myself get frustrated. Feeding is THE most frustrating thing, but I really do have to remind myself that we are in such a better place than we were a year ago. And the whole taking it one day at a time trick. It seems to fix everything, but its so HARD TO DO! I am hoping and praying that he will settle back into eating easier and it will be a less tense time in our house. The good thing is that he's done pretty well when we have to be on the go. If we're at a restaurant or someone else's house or whatever, he's managed to still eat. We don't follow the strict routine, but we are able to have a successful meal. I am really happy with that because I was worried about that when we came home. I mean its almost impossible to be AT home for EVERY single feeding every single day.

Though all things eating seem to consume my day, we're also trying to get back in the swing of things with his therapy and other things that are a part of our days and weeks. I'm feeling like I can't get it all done in a day as far as his scheduled therapy and the things I need to do with him at home. BUT we're getting back in the swing of things and each day and each week will get easier. It makes doing ANYTHING else, especially outside our house really difficult (not just fun stuff, but just ANYTHING like grocery store, post office....) but we're getting better. He's started back up at Windridge with his Hippo therapy and is loving it. We are getting a new OT all set up to come to the house, so that will start next week. I try not to think about WHEN and HOW I'll fit another 2 hours of therapy into our week. PT is still coming to the house in addition to hippo therapy and we are working more and more on standing, kneeling, taking steps, climbing, etc.

AND while I'm being Debbie Downer I'll add this. Another huge frustration coming home was his sleeping. He was waking up EVERY SINGLE night. Sometimes twice, sometimes for 2 hours at a time. Most of his naps were interrupted too! Most of it I think had to do with his tummy. We have a hard time keeping all of his G.I. issues balanced out. I didn't know what to do! His tummy hurt, so I felt like leaving him to cry was wrong. BUT we've had more and more full nights of sleep, so I think we're back on track there.

AND we're not only learning about life with a kid who eats food (even if it is blended) we are learning about life with a kid who has an opinion. We're seeing more and more "fits" when things aren't just right. He's finally figured out what he wants, but gets frustrated when he can't communicate it to us or physically do it himself. We are trying to find the happy medium with him and helping him communicate (which is tricky with his development, etc.) but also teaching him that things aren't gonna always go his way. So on the one hand, we're just like any other parent of a 2 year old. But on the other hand, we have a few more question marks when it comes to this sort of thing. We are confident that he can understand A LOT so we know he is capable of learning how to communicate and how to handle his anger/frustrations. Let the parenting begin. How can I complain, we've had the most laid back easy going kid for 2 1/2 years. He's still pretty darn good if I do say so myself. I figure its time he start giving me a run for my money. I just kinda think it was interesting timing with all the other stress going on!! :)

I've been home 2 1/2 weeks and I'm SOOOOO glad to be here. Each day is a day closer to finding our little groove. Kory has been SOOO helpful in keeping me from going totally crazy. Its been a long while since I've been pushed and stretched and STRESSED this much. I keep reminding myself that it will not last forever, it is just a season and it WILL get better. Not to mention, I've been in such worse places that some days I just tell myself to suck it up and get a better attitude! :)

Now that you've read this you will know why i have done NOTHING for the arrival of this baby I'm carrying. Nothing. We'll get to it eventually. Baby is great. 33 weeks today!

I will not post another word because this was crazy talk. and TOO MUCH OF IT!


Sarah said...

Jaymie, do you mind emailing me? Thanks
Sarah Brown

Molly Woodall said...

Jaymie...I'm praying LOUD and by NAME for you, Kory & Kanyon!
Love you!

High Heels and Huntin' Boots said...


Yeah for forward progress! We will be praying for Kan-Man and you and Kory. I can't imagine the schedule you keep! I wish we were closer! I would love to come help out! Especially as you prepare for the baby! Hope you have a beautiful, blessed day!

erin f. said...

WOW, I think you have ever reason to be stressed by this, and I know that things will definitely get better, but you go ahead and vent all you want! I hope things do keep getting easier with Kanyon's feeding. And i hope he starts sleeping better - that is the one thing I can KIND of relate with. Our little Ellie bean does NOT like sleeping!

sharon said...

yes, things WILL get better. you amaze me, jaymie! kanyon and his little brother or sister are oh, so blessed to have you as their mama!!

Daphne said...

Praying for you and klp! I'm a speech therapist and work with 3-5 year olds in the school setting, after they transition from early intervention...also originally from Longview/Alpine and have commented before. I work a lot with picture exchange/using visuals for communication for little guys and gals with needs similar to Kanyon's, and it is really eye opening to hear about your experiences as a parent. If you ever have any questions let me know. Thank you so much for your openness and willingness to share your experiences! Blessings to you, KLP, klp, and the baby on the way!

Specks said...

YOU ARE A ROCKSTAR. Hands down. No question. My head is spinning after reading this post...I cannot imagine how intense all the prep, weighing, motivating, etc. is. I really cannot even imagine how hard it is. I am praying for you and am sooo thankful that ya'lls baby is still cooking nice and comfy :).

Jodi said...

I know you didn't write all that out for compliments, but DANG-IT, you're getting some!!! You kick my butt. Seriously, you are my hero. And more importantly, you are HIS! That sweet little klp will someday know how much you go through for him and only him, and man, is he EVER going to thank you!!! Keep up the AMAZING work, sweet friend. AND the amazing work of growing that little sibling too. Seriously, KICKING MY BUTT! You rock. :)
Love ya!

Jacque said...

Wow, Jaymie...I know you probably don't remember me from ACU, but I just want you to know that you are being prayed for in England. I can't imagine the challenges you are facing, but it sounds like you are tackling them with grace and strength. blessings,
Jacque Holton Morrison

The McCarter Family said...

Doesn't it feel good to get all that out in writing? Not only do you get to let your readers know about what is going on, but its kind of therapy for you too! I can't imagine doing what you are doing! You do it so well and you are such an amazing mother! Praying this too shall pass! Love you girl!

Hicks Family said...

ok, well, I am totally exhausted, so I don't even want to really think about how you are feeling.
I have no way of imagining what you go through everyday, but I do know this...
YOU ARE SUPER MOM! No many people could go through the past two years like you and still come out with a positive outlook. Everyone has their debbie downer days - we are women and human. But, keep your head up, and this too shall pass. You will have a sweet little bundle soon, and I know that Kanyon will just continue to improve. You are truly an inspiration.

Chelsa said...

great to hear an update on kanyon!! :)

Leah said...

I love you, Friend! I am sure it feels like every second of every day is a scheduled event that is a battle. It is exhausting "fighting battles" all day and then when your night was supposed to be your moment of rest, he throws a curve ball. Growing and learning is HARD WORK and I give you an A+!

Anonymous said...

You probably already know this, but I had a child not talk until he was 16 months old. What saved us was sign language. I know your little guy is much older, and I am sure your amazing team has told you all of this. But sign language really opened so many doors for communication that had been closed to us before. Much fewer tantrums (for both of us) and a sense of accomplishment because we understood one another--or more like I finally understood him.

Kelly said...

You are doing an amazing job! Vent away...it's your blog! :) And as I'm sure you've seen already, it will be so so great to look back and read how far he has come as he keeps making such great progress. Keep up all of the hard and good work!

Kelly (friends with Paige P. and have followed your blog for awhile) :)