our saturday

We've had a very low key day today. The weather has been cold and rainy, and we didn't even step out the door. 

We played trucks...

I did a little scrapbooking.

Deac stared longingly out the window. (Jonah and I might have done a little of that too.)

Jonah "ate"... but really, he did ask for and munched on a few crackers.

Matt watched the Deacs get stomped... again.

Jonah made it a little better by looking cute...

...underexposed, out of focus, and completely adorable.

And he rounded out his day by having a Hug-a-Deac party in his PJ's.

On a less cute note, Jonah officially got put in his first time-out today. Daddy was working very hard to put new batteries in Jonah's remote control cars, and Jonah was just screaming and pushing him and being an all around stinky pants wanting them back immediately. He hasn't had many opportunities to practice sharing or patience, so he was pretty much out of control. So we did about a minute on the stairs and just removed him from the situation. I don't really think he got it, but we have to start some disciplining around here or we're going to have a little terror on our hands. So if you know us personally and your kids aren't sick, call me. Let's give this kid some opportunities to socialize. :)


We're planning on going to church in the morning. I'm excited but I also get really apprehensive about the nursery this time of year. I don't want to use that as an excuse though. I can't wait for Spring. I'll be sick with allergies, but at least I won't have to worry so much about colds and stomach flu. 


Oh, I have a question. The only thing Jonah will drink willingly is water. But he doesn't know how to suck (because of his dependence on the tube, I guess) from a bottle or juice cup. When I leave the spout in, he can't get anything out of his cups. When I take the spout out, he drowns himself, and his therapist and I worry about water going down his trachea. We don't want pneumonia. We've tried straws (his therapist brought a little honey bear that you squeeze and the liquid comes up) and juice boxes, but he just leaves his mouth open and sticks out his tongue, so most of it comes back out on his shirt. Any ideas as to how to get him to drink from a straw better? He really seems uninterested in closing his lips around a spout or straw of any kind. I think I have every sippy cup ever made, and I've tried them all. I've tried sweet tea, Pediasure, chocolate milk, juice... anything I can think of that might make him WANT to drink more, but nothing. All he responds to is water, but still just wants it to pour in his mouth. Please let me know if you struggled to get your child independently drinking and have any tips. Anything too sweet (like soda or the Pediasure) makes him throw up. I'm out of ideas. :( I'm not stressing or too down about it. I've come to a peace about the eating/drinking thing, and I know it's in God's hands, but I thought it was worth an ask. Thanks for the help! 


Hope you all have a restful Sunday. 


Please don't miss the post below about Tripp and Anton. It's important.

photos

Crazy hair, dirty bandages, about to get nudey. Good times.

All clean in his Grouchy Smurf t-shirt. (Thanks, Aunt Kim!)

I love this kid.

The best part of my day - Jonah Kisses.

I don't really know, but I thought it was funny.

He loves his Leap Frog Activity Table from his friends, Carston and Caroline.

Today's been okay. Jonah had his psych evaluation today. I was pretty skeptical, because, honestly, how do you evaluate an 18 month old? But it went well. Really, she just talked to me about all the issues Jonah's had, his reflux, current schedule, and how feedings are going now. We both agree that we need to take it slowly, not push him too hard, and have small goals. She agrees that his aversion is mostly driven by his negative experiences from severe reflux (I'm so tired of the puke), and that it's the one thing in his life he feels like he can control. It was very helpful, actually, and I'm glad to have focus, a plan, and someone who is trying to understand all sides of the complexity that is Jonah and eating.

We have some friends coming tomorrow afternoon, and I'm excited that Jonah gets to socialize with some kiddos.

Well, it's been a busy day and I didn't sleep well last night, so I'm off to bed. Goodnight.

jonah update and fun discoveries

Matt and I had a really great day yesterday, and the report from Granny and Grandaddy was that Jonah was a very good boy... who took an extra long nap. Go figure. Matt and I were able to eat a delicious meal at Cracker Barrel, and then we were able to use our 50% coupons at Gap and caught a few other clearance sales. I love me a good sale. It would seem I'm becoming a shopper in my old age. Funny how being stuck at home will do that to a girl. Afterwards, we went to see Inception and then got dinner at Ronni's. And between my carb-fest at Cracker Barrel and the wings and pizza (both still as good as I remembered) at Ronni's, I'm fairly certain I gained 10 pounds. Oh well. Back on the wagon tomorrow. My goal is to work out four times this week, but that will mean getting up at 5:45 at least two mornings this week and going first thing. Pray for me, folks. It will take a miracle to make that one happen.

We made it to church today and Jonah is napping now. Good day so far.
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A quick Jonah update:
- Eating: I took a mega break from offering anything to him by mouth. For both of our sakes, and it was the right decision seeing as how I don't feel like jumping out our kitchen window anymore (kidding... sort of). A couple of times this week, I've very nonchalantly offered Jonah some yogurt here and there, and he's eaten a couple of ounces a time or two. No problem, Little Buddy. It's all good. (This is me, not caring.)
- Sleeping: Still sleeping all night most every night for about 11 hours. Good stuff. He only takes one nap a day, for an hour and a half. I'd love to push that to two hours, but I'll take what I can get.
- Pain/Skin: Jonah's been in rough shape these last couple of weeks. He has a huge raw area (from a refilling, growing, dragging blister) on the top of his left arm/back, two big places on each side where his ribs are, a place around his g-tube site, a small place on the top of the other arm, and a big spot on the bottom of his foot/toes. His face is doing pretty well, but his forehead and eyelids are worse than the rest. I can't wait until he knows what rubbing does to his face and can understand to take it easy, already.
- Nutrition: In the last seven weeks, Jonah has gained three and a half pounds, and has grown three and a half centimeters. He has jumped from the 25th percentile to the 75th. Thank you, avocado, flaxseed oil, and duocal. We're backing off some of the calories and are able to relax a little more about the volume he takes in. It's nice to not feel like every calorie is life or death now. I'm so thankful.
- Cuteness: Yep, he still is.

So overall, things are well. Jonah has his 18 month check-up a week from Monday. I think this will be the first time EVER that we've not had to go to the doctor between well visits. Three months without a pediatrician visit! Thank you, God!
**********

I wanted to tell you about a couple of cool things I found out about this past week. You already know that I'm a mega fan of online grocery shopping. Actually, I try to do as much shopping online as I can, since our schedule, most days, doesn't allow for much getting out.

I now follow this blog, Money Saving Mom. It's a great place to print out coupons if you don't get the newspaper, and you can sign up for weekly emails and pick your preferred stores, and she'll email you the deals/coupon match ups to save you lots of money. I haven't really figured it all out yet, but she makes it super easy. You can join her Facebook page here.

And I also signed up with Groupon this week. It's free to join and you get emailed one coupon/awesome deal per day. You can take it or leave it, and there are a lot of things that don't interest me, but when you get a good one, it's so good. Matt and I each have an account and each paid for a $25 coupon to get $50 of clothes from The Gap. We paid $50 for $100 worth of clothes yesterday. Woohoo! (Note: you don't get your coupon immediately... or at least The Gap one didn't come immediately. I got it in an email the next day and printed it out from there, so don't be worried if it takes a while before you get it in your inbox.)

And probably my favorite discovery that I learned about from MckMama, ebates! Do you guys know about ebates? Essentially, you sign up for a free account, and you go there before you begin any online shopping. They have pretty much any store you can think of AND you can search for coupons (online codes) to get a percentage off and/or free shipping. And if you click on the store link from ebates (go through their site to get to your store of choice), you earn cash back on your purchases... anywhere from 1-10% in most cases. I've already earned a few dollars back. I think they send you your check quarterly. Anyway, if you want to sign up, it's free. AND I get rewarded for referring folks if you let them know I sent you. You can click here if you'd like to let them know you're coming through me. I've loved it so far.

Alright, just wanted to let you know about those fun things. Hope everyone is having a good and restful weekend. We're one week closer to Fall. Oh man, I can't wait. (On a side note, Cracker Barrel already has some of their Christmas stuff up! Apparently nobody's told them that it's still AUGUST.)

this and that

Hey Everybody,

It's me, Jonah, checking in for a very short post. It's WAAAY past my bedtime. We've had an okay day today. I've thrown up twice, and Mommy is frustrated and says she just doesn't understand why I'm throwing up again all of a sudden. What's she complaining about? I'm the one who's puking. She says that, now that I'm on solid foods through my tube, the throwing up is WAY grosser than it used to be. I'd have to agree. Anybody got any gum?

Mommy got kinda mad at somebody on the phone today. She talked to a lady on the phone at 11am and at 2pm to try to get someone to come and switch out my feeding pump for a new one. Even though I'm trying to sleep through the night, that stupid pump is waking Mommy, Daddy, and me up like five times a night with its false alarms: "no food" when there's still plenty in the bag and "no flow" when there's no kink. Anyway she talked to this lady TWICE and told her we needed a new one before tonight, and it was after 7pm and she still hadn't heard anything. So she had to call the after-hours number and gave a different lady the 'what for'. Guess who has a brand new pump tonight?

Mommy was kind of a spaz today. The camera guy and interviewer were supposed to come interview Mommy and get some footage of us for a video for the new Brenner Children's Hospital site (hopefully going up in September), and she forgot ALL about it. They showed up at 4:30. Guess where we were? The grocery store. Not good. Daddy called us at 4:55 to ask where we were. He had just gotten home and they had been waiting there for 25 minutes not able to get in the house. Mommy felt SO bad. But she changed clothes (out of her Aquaphor shirt) and threw on some make-up, asked them not to focus the camera on her nasty carpet, and on we went! They were so nice, and I think they forgave Mommy so everything is okay. I was afraid they might be mad at her, so I made sure to give them my really sweet smiles and played like a good boy for my part. I wooed them. I'm cute like that.

Mommy says I have to go to bed now, but here are some photos from yesterday. They're all kind of blurry, but Mommy and Aunt Shaina were really trying not to use the flash. Gotta go... Mommy's giving me her angry eyes.

growing jonah

Jonah is still refusing to eat, but the nutritionist came today and said he's growing great. He's gained a pound and a few ounces since last month and has grown 2.5 cm, I think she said.

He's in the 45th percentile for height, 50th percentile for weight (WHAT???!!!), and his weight to height ratio is in the 75th percentile.

So as frustrating and maddening as long g-tube feeds are, they are obviously working. I would rather deal with the frustration I'm feeling now than deal with the constant fear I felt before we had the g-tube... when I literally had to force milk down his throat (just for him to puke it right back up).

I know y'all have a lot of questions about what I have and haven't tried, and why I can't do this or that. I don't really have a good way to answer them since they're scattered throughout the comments. I'm up for suggestions, though, if you've been here before. Thanks for letting me know what's worked for you. Anything is worth a shot!

so frustrating

UPDATE: Just to answer the "why not 'on the go'" question: Jonah will throw up if we don't get the blended mixture (about 5-6 oz of food with 3 oz of formula) to a thick pudding consistency. It can't be pumped, but has to be pushed at a rate of 10 cc's every 2 minutes. Given the fact that it has to be blended, pushed at such a slow and continuous rate, and just the fact that it's a MEGA mess (think green and purple goo flying up and hitting the ceiling as you try to shake/push out air bubbles), it's just not conducive to "on the go" feedings. The only place I'll feed him is a kitchen where I have access to a microwave (for thawing blended cubes), electricity (for mixing in the Magic Bullet), and a sink (for clean-up). Thanks for the thought though. If only it were as easy as Pediasure in a back-pack pump. Unfortunately for us, that means PUKE CITY.
_______________
Jonah continues to NOT eat. We had our evaluation today by a speech pathologist, and basically, it boils down to this:

- Speech can't work with him on the tongue thrusting thing if HE WON'T EVEN OPEN HIS MOUTH.
- Speech can't do much if he's refusing all together and has a psychological issue, not a physical issue.
- He definitely has a psychological issue (in my opinion).
- Kids Eat will only see him in their environment, not his, so his eating is not representative of how it is daily for us.
- It will be three more months before Kids Eat will see us again. In the one and a half months (ish) since we've seen them, he's regressed A TON.
- The OT who we need to work with will not have openings until the Fall.
- Even then, I'm not sure what we'll be able to do for him.
- We will soon be getting an evaluation from a psychologist to determine what I already know.
- The psychologists only do evaluations, not therapies for feeding.

What does this mean for Mommy, Daddy, and Jonah?

- Continued one step forward, five steps back.
- Mommy's getting more frustrated, Jonah's getting more frustrated, Mommy's getting more frustrated and so on and so forth.
- We don't even have a chance to get out of the house until 2:30 (you know, the hottest part of the day) because we do feeding, bath, dressing change, nap, and another feeding before we have "unscheduled" time.
- We can't make any morning trips anywhere.
- We can't go anywhere for more than a two hour period.
- We can't meet anyone for lunch.
- We can't feed in public or be anywhere other than home (or a home where we feel comfortable hauling a huge bag of food and supplies) for feedings.
- If we go out when Matt gets home, we have to be home by 6:30 to feed him. That gives us about an hour to get out and do anything as a family.
- Feedings take an hour because we can only do water/food through the tube at a slow rate.
- Jonah's aversion to sitting in his high chair is growing.
- Mommy's aversion to trying to keep him content and entertained in his high chair for at least three hours a day is growing.

I can't begin to explain how incredibly frustrating these kinds of feeding issues are. You only get it if you've been there. Just take my word for it. I tell people all the time that I can handle the blister popping and bandage changes, but the feeding stuff is going to SEND ME OVER THE EDGE.

Knowing that your child cannot (or won't) do such a basic and supposedly inherent thing and knowing that you, as his mother and primary caregiver, can't help him down that road... knowing that this takes him one step farther from "normal"... knowing that he is missing out on all kinds of normal childhood experiences and activities because he can't eat/be fed outside of our house... AAAGGGHHH!

Please pray. I'm so out of ideas, I don't even know what to do. And it doesn't seem like anyone knows what to do to help us. It's so very isolating. While my friends blog about going with their kids to the zoo and story time at the library and the swimming pool or even for a milkshake, I sit home and push green crap (really want to use stronger word here) through a tube, tethered to a high chair.

PISSES ME RIGHT OFF.

this and that

I'm super worn out, so this will be short. It's been a good day... I've gotten out a lot. Mom and Shaina kept Jonah so I could meet M for lunch (and by lunch, I mean a 2 hour and 45 minute girl time at Moe's). It was great, but I'm too tired to write about it now, so I'll organize my thoughts and give an update on the adoption stuff later... after I've had a chance to look at some of the websites and agencies she recommended. M is super wonderful, and I see us becoming good friends.

As soon as Matt got home from work, I went to the gym and I KICKED MY BUTT. I'm pretty sure I won't be able to move tomorrow. But it feels good to work out, and I'm trying to eat better too. It's not that I want to lose a lot of weight (although a few pounds would be nice), it's more just that I feel GROSS with my lack of exercising and horrible eating habits. I feel like if I don't get it under control now, I'm going to gain a lot. I've gained 10 or 15 pounds since I stopped pumping for Jonah when he was four months old. The old metabolism just ain't what it used to be. Anyway, all of that to say that I am beat and am looking forward to good sleep - you know, the kind you get after a day in the sun or at the pool. That's how I feel... all heavy like. Anyway, whatever. I'm rambling now.

Jonah's doing well, and I actually got him to eat a few bites of oatmeal at breakfast and a couple of ounces of yogurt at lunch. Complete refusal and defiance at dinner though, so who knows. He likes to keep us guessing.

Okay, that's it for me. For reals. Over and Out.

today

We've had a fairly uneventful day. Jonah let us sleep in until a little after 8:00, and then we fed him, did dressing change, let him take a nap, and then did another feeding. I tried to get him to like eating again by putting him on a strict diet of Chocolate Ice Cream, but as you can see, more ended up on his face than in his mouth.



Then we headed out because Deac is STILL cold, and we wanted to get him a shirt so he wouldn't have to keep wearing his bulky jacket. We did get him a little shirt on clearance for like $3.00, and we also found this -


That's right. My dog has a Snuggie. You wish you were so cool.

While we were out, we bought Jonah a few new toys. I wanted to get him a few new things specifically to reserve for feeding times - partly to make eating something special, that he WANTS to do and partly because I'm trying to entertain him without so much TV. I hate it. I don't mind some TV or even a moderate amount, but between general play time, dressing change, the fact that we can't play outside and feedings, he's on TV overload. Yuck. I would so much rather him be actively DOING something than just observing something. I do love the educational shows and the most recent DVD purchases (ESPECIALLY Curious Buddies), but I want TV to be a last resort.

This look says to me, "Take your eyes off my toys and slowly step away."

So that's about it. No big plans for tomorrow. We'll celebrate with The World's Best Daddy around the house and hope to make it to Church. It's always hit or miss for us. Jonah threw up his entire last feeding tonight. I have no idea why. BUT right before bed, he did willingly take two ounces of yogurt and two ounces of oatmeal. I guess he'll eat when he's starving. It makes me want to NOT feed him by the tube to see if he gets hungry enough to eat by mouth. I know it would mean one missed meal, maybe two. I'm not brave enough to risk the calories yet, but I really think it would make a difference. He's never known how to read and satisfy hunger cues. Even if it did make him eat, I know he wouldn't eat enough to get the calories he needs. Even when he's eating "well," he maxes out at about four ounces.

Okay, my eyes are droopy as I type, so I guess that's it for me. Happy Father's Day Eve.

(Please forgive the poor quality of these photos. They're cell phone shots. I ordered a new battery for my camera and am hoping it will get here by Monday or Tuesday. I'm not even sure that's the problem, but I sure hope it is.)

weird day

Today was a weird day. I lost perspective. It happens.

Jonah not eating is driving me crazy. My Mommy Gut is telling me that it's just a control issue and that he's just being difficult. I don't think it's physical. I don't think he hurts. He just WANTS. TO. HAVE. CONTROL. I have no idea where he gets that from. Ahem.

I cannot believe we went from him eating two to six ounces of solids in the last couple of weeks to not even eating ONE bite. Every single time I think he's figured it out or we're over a certain hurdle, we always backslide. ALWAYS. It is exhausting, frustrating, and it really, really, really makes me want to cuss... which I've done today but I'll withhold from all you innocent bystanders. You're welcome.

THEN, we finally got out of the house after two long tube feedings, bath, dressing change, morning nap, and a pee-all-over-the-place-and-through-two-layers-of-leg-bandages incident to go to ... the pharmacy. Yeah, I know. We are really living it up over here. So we go to the pharmacy, and I had to go in because I needed some over-the-counter things, and this older lady is staring us down. She came right up on us (like, NO personal space whatsoever) and asked what happened to him. So I explained about EB and she sort of acted really skeptical. And then she said (wait for it...):

"I bet a lot of people look at him and think you've done really bad things to him."

(MOUTH AGAPE)

I said (very sweetly), "Yeah, I know he looks pretty bad. You wouldn't believe the mean stares we get."

What I wanted to say was, "Bad Word You, Lady. If I didn't already worry and wonder if that's what people thought, I know it's the truth now. Thanks for making it so clear. DO YOU KNOW WHAT I'VE BEEN THROUGH TODAY?!"

And I KNOW (seriously, I know) that she's just kind of lost her filter and that she wasn't trying to be mean or hateful or even insensitive. I'm not mad about it (anymore). I guess, more than anything, it just confirms to me my worst fear... that (some) people think I AM THE CAUSE for all his pain. I can't tell you how sad that makes me. Many EB families have been turned into Social Services. I know that people think they are doing the right thing. But it is such a heavy, emotional thing to be accused (even if only in someone's head) of child abuse when you give your heart and soul and literally ALL of your time to care for your hurting child. Twist that knife real good, whydontcha?

(And yes, I know I need to get little cards made up. It's on my list.)

But then I went to my friend's jewelry party (she makes BEAUTIFUL stuff), bought myself a pair of earrings, turned on Country on the way home and belted out Any Man of Mine like my life depended on it, and I'm feeling much better now. Thankyouverymuch.

Going to watch Friday Night Lights, head straight to bed, and sleep up to regain perspective. Nothing like seven hours of staring at the backs of your eyelids to help put things back in focus. I love you, sleep. You never let me down.

a wedding and some good news

Matt and I went to my sister's best friend's wedding on Saturday. I've known Brittany since she was a toddler, and I've been blessed enough to become closer to her in our adulthood through Sarah. Her mom is also a rock star and one of my fantastic dressing change helpers slash awesome friend.

My sister has never worn makeup, I don't think. I relished every moment of slathering that crap all over her purty little face. She was not diggin' it.


Here's a shot of Matt and me before the wedding. Doesn't he clean up nice?


My sister. Isn't she beautiful? Makeup or not.

Emilee - Brittany's sister. This girl holds a special place in my heart and loves her some Jonah.

This is Jennifer, another one of my sister's best buds. She's a keeper.

Some more photos of the day.

Remember Salem? I can't believe how the time flies.

I got a little carried away with Salem pics. Seriously, this is only a few out of like thirty.

This is MY FAVORITE.

Could Brittany be any more beautiful? Definitely not.

The exposure on this next one was messed up, so I tried to tweak it. I should definitely not be allowed to tweak stuff.

This was not at the wedding. This was the next day, after church. Jonah was napping in the car, so we stopped by my mom's while we waited on him to wake up. I thought it was a good one.

I'm feeling tired tonight so I'm going to make this short, but I have some great news. Jonah is starting to take solids by mouth like never before. Today he ate nine ounces of yogurt, six and a half ounces of Apple Cinnamon Oatmeal, one ounce of black beans, and one ounce of his weird tube blend concoction (chicken/gravy baby food, avocado, black beans, sweet potato/white bean baby food, formula, apple juice and rice cereal... I know, disgusting right?). Anyway, I think he's finally getting it. I'm so thankful and don't take one little opened-mouth, eager bite for granted. We're certainly not at the "don't have to use the tube" stage, but it's a HUGE BIG ENORMOUS AWESOME step in the right direction. I'm so proud of him, and I know how many of you have prayed and prayed for this. PRAISE GOD!

Alright, I'm off to bed. As always, thank you so much for praying for Jonah's struggles, no matter how big or small. You know to my mommy heart they are all huge, and every obstacle overcome (or on the way to overcome) is just one more moment, memory, accomplishment I thought he'd never see. He's amazing. Thank you, God.