one semester of spanish love song

I just wanted to share this video of how to use minimal Spanish to woo your love. One of my fellow teachers showed this to me my last year of teaching, and I thought it was hilarious... and so true. My kids loved it too.

Thanks, Amy T., for reminding me. I needed a laugh. Good memories. :)

(And I'm kind of posting back to back here, so make sure you don't miss Jonah's 15 month post.)

jonah's fifteen month post

I back-posted Jonah's fifteen month post. I wanted it to be in the right order (it's been a looooong week), so you can see it here.

this and that

This will be short, but I just wanted to check in.

Jonah and I have had a very rough week. Sunday through Thursday was spent with him not being able to tolerate his formula and throwing up and me cleaning up vomit and trying to figure out what in the crap was going on. The last few days I've spent blending food, cleaning up my kitchen over and over and over again, calculating calories, working on a ridiculously detailed spreadsheet, and struggling to keep Jonah fed and hydrated. He's not throwing up now because I've cut out bottles completely. He's getting three tube meals a day (and whatever solids he'll eat by mouth) and getting an overnight drip of water and/or Pedialyte. Right now we're doing 20 ml per hour. I can't get him to drink any fluids by mouth during the day.

And on top of all that, he has been EXTREMELY fussy and often times inconsolable. I don't think it's physical pain because when I put him in the car or put on one very specific video or let him play with his ball popper, he's fine. But ANYTHING else ticks him off - including going places, even Target. He's never been unhappy in Target. My mom moved into a new house today, and I took him over there for about an hour and a half this afternoon, and he fussed and cried the entire time. We're having a hard time finding time to leave the house between nap times, food prep, 45 min to one hour feeding sessions, clean up and dressing change. This past week, he got to go to church on Sunday and Target on Friday. And then we got out once today. But even when we do get out, the only time he's happy is in the car... not when we arrive at our destination.

I haven't blogged much about all of this because honestly, I've been so tired, frustrated, and ticked off, I knew I would just sound whiny and be a downer. So anyway, I'm going to try not to complain too much, but it has been a long week.

I really ask for prayers for whatever is going on with Jonah that's making him so difficult. Maybe it's teething, but it sure is selective teething. I'm really wondering if it's behavioral and if it's that Jonah is cooped up in this house so much, he's really starting to have trouble adjusting to situations outside of the normal (our toys, our house, me). That makes me so sad.

So anyway, I'm looking forward to next week, and I'm so glad Matt's off work on Monday.

the bee's knees

Today Jonah crawled to and discovered our laundry room tiny laundry closet.

He thought he was just the bee's knees.

But then he realized I was THREE FEET AWAY! (The nerve...)

So he crawled back to me...

Stuck out his cute little tongue...

Smiled...

And gave me about five knee hugs.

It was awesome.

fifteen months today

Hey everybody. It's me, Jonah.


I know it's been a while. Mommy has been a MAJOR computer hog. Something about me Aquaphoring her screen and such. Whatever.

Today I turned 15 months old.

A lot has gone on these last three months.

Mommy and Daddy started leaving my toes unwrapped. They said my toes were starting to web a little bit, and so, well, nakey toes for me!

Aren't they the cutest? They're a little blistered, but nothing I can't handle. Mommy says I'm so tough. And my toes are getting a little tougher too with time.

I'm going through a very weird stage right now. I can't talk, but I have so many opinions and that makes me VERY frustrated. See?


Yes, it's true. I've mastered the fake cry. And the fake whine. And the fake tears. And the fake angry scream. I'm a big faker. Still cute though.

These last few months have been super busy with lots of firsts.

Daddy and I made our very first fort...


I got my very first haircut (did not love it)...



I had my very first Easter AT HOME...


I went on my very first Easter Egg Hunt...





I learned to clap (and had a love affair with it for several weeks)...



I wore my very first collared shirt...


I learned to sit up on my own...


And best of all - I learned to CRAWL!

Can you believe it? Mommy just burst into tears when I first did it. She says I'm the cutest little crawler she's ever seen. I'm slow and cautious, but I am definitely on the move. Mommy knows the real trouble hasn't started yet. Just wait until I get confident. She won't be able to stop me.

And guess what else? I've started going into the nursery some at church. Mommy still goes with me since I'm so high-maintenance, but we're getting there. I love to crawl around on the floor and play with all the different toys. Mommy says it's good for me to be with kids who are close to my age. She says that in some cases, peer pressure is a good thing. I'm going to remind her she said that when I'm fifteen.

I've gotten to take a couple trips over the last couple months.

To celebrate my big brother in April, we went up to Smith Mountain Lake in Virginia. I did not love it.


Most of the time Mommy and Daddy spent putting me in the car and driving around just so I'd be happy.

And last weekend, I got to go to my (girl)friend Quinn's birthday party. *Please excuse my Mommy. She interrupted me with her parenthetical addition.*


And the biggest thing that happened in these last few months is this -

Yep, that's right. I got a new friend. His name is Mic-key. Mommy says it's going to help me get all the calories and fluids I need to be healthy. It's caused me some problems, but Mommy thinks we're getting things under control now, and that I'm doing better. I don't get much formula anymore. Mommy now gives me all kinds of crazy blended food through my feeding tube. Tonight I had Baked Ziti. Can you believe that???

Anyway, back to the point. Here I am the afternoon after my surgery. I had a couple really sleepy days, but I recovered so quickly. Mommy is not surprised in the least. She says I'm a champ.

Before I got into my "everything makes me grumpy and don't even think about breathing in my area" stage, I really loved to be outside and swing at the park. Most of the time, when nothing else makes me happy, being outside will.


I'm still loving my ball popper, and I LOVE pinwheels.

One of my favorite things to do is play up in my room with Daddy. I have one of those basketball hoops hooked on my closet, and we play basketball. I pass it to him, and he shoots. Sometimes he holds me up there to let me shoot, but I refuse to let go of the ball and just dig hangin' out in the air. I like to give Daddy's muscles a workout. I love my Vtech Alphabet Train. Some wonderful ladies at Daddy's work got it for me for my birthday, and it is one of my most favorite toys. I also really like the bubble machine my Nana got me. It makes like 1,000 bubbles a minute. It's out of control.

I weigh between 22 and 23 pounds. I'm in the 20th percentile for weight and the 35th percentile for height. I'm not saying any words yet. Mom thought my first word was "Deac" but she hasn't heard me say it for several weeks, so maybe it was just her imagination. I "talk" all the time, though, and Mom says that once I'm saying real words, she thinks I'll never stop talking. She hasn't a clue where I might get that from. I'm sleeping through the night and napping like a champ. It only took me a year to figure it out, but these days, I love sleep.

No matter what, sleeping or not sleeping, eating or not eating, being happy or fussing nonstop, Mommy and Daddy love me so much and wouldn't trade me for the world. They can't believe how far I've come and all of these milestones I'm reaching. It's been an amazing three months, and Mommy and Daddy are so excited to see what else God has in store for me. They're pretty sure it's going to be amazing.

better today

Today was better.

Jonah only had one big throw up this afternoon, but I'm pretty sure it was my fault. I was giving him yogurt, 1/4 of a banana, and two ounces of formula. It was very liquidy, and I think I might have pushed it too fast. And he may or may not be able to tolerate bananas. That's yet to be determined. I know he can't handle banana pudding, but I thought it was the sweet flavor. Maybe not. So it was either the bananas, the formula, how liquidy it was and/or me pushing it too fast. It was a fluke. I'm sure it was a fluke. It had to be a fluke, right?

I ordered my Vitamix 5200 today. I have read The Simmons Family Blog, and she highly recommends this blender. It will pretty much blend anything to liquid. Right now I can do veggies and fruits that aren't seedy in my Magic Bullet, but I have to use baby food meats. I can't do rice because it's too thick and pasty. And I haven't tried beans, but I think I would have a similar problem with those. The Vitamix can do rice, beans, meats, and grains to liquid. AND I could just blend up whatever we're eating - casseroles, lasagna, steak - whatever, and give it to Jonah. I'm excited. It's expensive, but there's a medical discount of 25%, and I ordered a reconditioned one instead of a new one. It also comes with a seven year warranty. I'm committed to trying this for Jonah, and I just don't feel like I can give him the protein and grains he needs without a better blender. And I definitely can't risk having chunks and clogging his tube. So the Vitamix it is! I'm pumped.

Life's an adventure, I guess. It seems like we're always trying to figure something out.

Thanks for all the continued prayers and support. You've got to be exhausted.

And is it just me or is this episode of Glee even more weird than usual? That Lady Gaga is a strange bird.

ugh

I'll be honest. Today was a rough day. This will be short.

Jonah gushed one time yesterday and three times today after probably five days of not gushing at all. Needless to say, I'm completely frustrated and confused. I don't get it. He barely had enough today to stay hydrated.

His tube has been leaking more than usual today. When I finally got him to drink an ounce of Apple Juice, it leaked out of his tube and all over his shirt. Yes, the little flappy was closed. I don't know why or how it leaked.

He had his fifteen month check-up this afternoon, including three shots and getting the granulation tissue that's growing under his tube cauterized with Silver Nitrate. He was completely freaked out any time they touched him to do anything.

I had my annual check-up at my OBGYN office. It was much more difficult to be there than I anticipated. Facing the happy memories of being pregnant, the horrible memories of Gabe's death and the anxiety I felt with my pregnancy with Jonah, and facing the reality that I'll never be pregnant again kind of slapped me in the face. I hated it.

And to top things off, Jonah is regressing on his solids eating. He will only eat a little bit of soup (sometimes) as compared to 1/2 cup twice a day before. And remember the yogurt he loved that one day last week? Well, now he gags, cries, and pushes the spoon away when you try to feed it to him. Same yogurt. Same time of day. Same spoon. Frustrating.

I know these are all little things in the scheme of things, but all piled into one day... too much.

I'm hoping that maybe Jonah just has a little tummy virus or something and that we're not going to start having those bad tolerance issues again. A lot of the vomit today came from oral feeding. Some came after I had used the tube.

I really want to switch to all blended foods through the tube instead of formula, but it is so hard to get the calories he needs in small enough quantities that he can handle it, while still getting all the food groups, vitamins, and ounces for hydration he needs. But man, I'm reaching my limit with formula.

It's been a long day. I'm glad it's over. Tomorrow has got to be better.

a few pics from quinn's party

The sweet birthday girl, Quinn, with pink icing on her forehead. (Katie's photo)



Quinn and Jonah eating Quinn's Mickey Mouse Maracas. (Katie's photo)


Jonah (screaming) and Quinn (being a perfect angel). How dare I put him down???

Deciding it might be okay after all... notice the tears on his cheek.

A recovered Jonah. (It did not last.)

More Jonah and Quinn - playing with (but mostly eating) blocks.

It would appear he is sharing this block. In reality, he is stealing it.

Quinn really is sharing.

Rory - Quinn's beautiful big sister.

Sweet (but not acting so sweet) Jonah.

I was so, so glad we went to Quinn's party. But Jonah barely napped at all on the way, and he fussed A LOT. We don't get out that much, and he's used to it mostly being just me and him, so he has a hard time with change sometimes. He did okay, but I was just thankful that it was at Katie and Nathan's house and not a public place. He's really getting to an age where he seems to have more anxiety about new places and people. It was great to see Katie, Nathan and the girls, and it was TOTALLY worth it.

Happy First Birthday, Sweet Quinn. So glad we got to spend it with you.

a happy weekend

This will be short, because, honestly, I just can't get enough of Friday Night Lights, and I'm ready to relax for the day. We've had a good day. Jonah did not throw up today, and he hasn't in several days. I know he probably will (he's overdue), but I'm thankful for the days he doesn't. Things are going much better. He's still not eating as much as he was by mouth pre-surgery, but he's definitely able to tolerate his tube feeds much better now. Thank you so much for praying for that specifically. I was so frustrated and overwhelmed at the beginning.

I just have to say how proud I am of Jonah. Every day it seems like he's learning new things, figuring things out, coming up with new sounds. Every month that passes, I'm like, "No, THIS is my favorite age." It definitely helps that he's napping one to two hours a day and sleeping all night. I'm much more awake to enjoy it all. But really, he's so much fun. He's somewhat of a mama's boy, for sure... There are times that is very frustrating, but I'd be lying if I said it doesn't make me feel so special. And as we know, it IS all about me. Kidding (just in case you didn't know).

Jonah crawled all the way across the rug today. He's pretty steady when he goes, but he's still timid about starting. It's so neat that he can crawl to the toy he wants instead of me choosing for him. He DEFINITELY has opinions. I'm hoping crawling can help him express them. But he already went for the power strip today, so I'm guessing it will probably just lead to more frustration on his part.

We got to go to my friend Gina's diner tonight, and we're going to Holly Springs tomorrow for Quinn's (Katie's youngest... you know, Jonah's girlfriend) first birthday. And Trent is in town too. I'm excited about a happy weekend.

Back to FNL. I'm addicted.

we have a crawler!

Jonah is officially crawling!!! The last few days he's been so close but mostly refused to move his knees. He would get up on his hands and knees, rock, stretch, move his hands, over-extend, get ticked off, lay his head down, sit back up, fuss, spin around, go backwards... pretty much get as close to actual crawling as you can without doing it.

He had his Physical Therapy this morning with Ms. Ashley, and he would not do anything. He was fussy the whole time and just wouldn't cooperate.

And then, after Matt got home, it's like something clicked and all of a sudden, he knew to move his knees.

This video isn't great. He was already tired at this point (it was right before bed), but you can see him move his knees a couple of times. I'll try to get a better one in the next couple days.

I can't tell you how proud I am of him. He is so amazing and just keeps fighting, no matter what. I'm guessing that, within a week, I'll have real trouble on my hands.

Praise God!

a whole lotta STUFF

I tried it again, and it finally worked, so feel free to ignore the ranting of the post below. (Although you should read it as it contains some very exciting yogurt news... I know, I know. Can you even stand it???)

I wrote a very detailed post on the actual "how to" of dressing change last April. You can see it here if you are interested. I went back and read it just now and it BLEW MY MIND. Not much has changed as far as WHAT we do, but there were several things that really struck me. One - I cannot believe how tiny Jonah was, how few supplies it took to bandage him, and how HUGE that FuzziBunz looked on him. Crazy. Two - I cannot believe how many new blisters he was getting on his feet and other places those days, and it just amazes me how now he only seems to blister (most of the time) on his hands, toes, face, and the occasional place on his torso. He has come so far. Three - I cannot believe how scared and timid and ignorant I felt then. I feel so much more confident now. Amazing the difference a year has made. And four - I am still in awe of how much healing has taken place and how much God has done in Jonah's life since he was born and even since last April. The leg that I mention in that post - the one I say will probably always be discolored - looks completely normal now. His only scars are from his biopsy sites. He is an unbelievable healer. His blisters are so much more under control now than they were then - some of that is because we know so much more about how to better protect him now, but a lot of it is ... well, he's just better now.

This post is just to show you how much STUFF is involved with caring for an EB baby. Keep in mind, there are additional supplies to care for g-tubes and trachs, but these are JUST the bandaging materials. Most of you know (as you'll see in last year's post) that we didn't have anywhere to do bandage changes when we first came home from the hospital. So our church, the blessing that they are, finished our unfinished basement, gave us LOTS of storage space, decorated it all purty like, and put in a counter and sink so we would have a designated area (NOT on our dining room table) to care for Jonah. We are forever grateful. Seriously, I don't know what we'd do without it.

Here is our closet fully stocked for the month. I always get a little extra though, so this may be about 40 days worth.


The top shelf is where we keep the boxes of excess stuff that refills the bins on the lower shelves. On the left is Transfer, the bottom layer dressing. On the right is Conco roll gauze, which is the second layer. It is softer than Kendall or other roll gauze, but it's essentially the same thing. The second shelf holds our sterile gauze, Polysporin, Desistin, Alcohol Swabs, and Aquaphor... lots and lots of Aquaphor.


The third shelf holds our drawers with needles, sterile gauze, tongue depressors, and suture kits. That middle drawer holds Vaseline gauze (which we don't really use anymore), Tubifast (the outer layer bandaging that looks like sleeves), and the Conco.

The fourth shelf holds Chux Pads, and all our different sizes of Transfer and also some Lite (another bottom layer dressing). The shelf below that holds boxes of gloves, alcohol sanitizer, rolls of uncut Tubifast, and... I'm not sure what that is. Probably a random box of extras.

The bottom "shelf" holds all our extras. Baby wash, saline water, some Pedialyte, antibacterial wipes, eye lubricant, and lots of different sample dressing materials that I've been sent by other EB folks (and some I've ordered) over time.

Every night we go downstairs, usually right after dinner, and set up for the next morning's dressing change. Here is what it looks like before we cut all the supplies. I order big sheets and then just cut the size pieces I need.



Matt cleans the counter, all the tubs and tubes of ointments, scissors and tweezers. He also sets up the TV trays with the towels, Chux Pads, and washing materials. He takes out the trash and puts the clean sheets and blankets on the actual dressing table where Jonah lies. I cut all the Transfer pieces, and lay everything out in the right order.

Here's what it looks like all cut and ready (except for the Vaseline gauze... these photos are from March).


And here's the final set-up. CHECK OUT OUR AWESOME TABLE. My dad made this table for Jonah. It's so sturdy that it survived sliding off the back of his truck at 70 mph going down the highway (but that's a whole other story for another day).

See this lock?

Oh yes, Friends. There is more to this table than first meets the eye. It comes complete with Lazy Susan rotating technology. Jonah thinks it's a trip. Not to be confused with Tripp, who is adorable.

And here's everything from a different angle. You can see the TV trays with all the towels and bath stuff. We leave him bandaged and only bathe is head, face, and torso in the tub. His limbs are done one by one - take off bandages, wash limb, replace bandages on that one limb, then move on to the next.

And this is the angle when you first get down the stairs.

Every day, without fail, this is what we do. Bath and dressing change take about two hours (depending on the state of his skin and how much blister popping I have to do AND on how much he does or does not cooperate).

And this is what it looks like when we travel. This is at the lake condo, on the dining room table.

I'm not complaining. It's really not as bad as you'd think, and it's just part of our normal now. But it does make it hard to travel. He's 100% worth it, and the love and commitment we have for and to him is even greater than when I made that post last year. It just grows. Kind of like his body... HOLY COW... can you imagine what it's going to take to bandage him when he's 15? We'll take our miracle long before then, thankyouverymuch. :)

So anyway, I guess one point I want to make is this - when you are praying for all these EB kids, please pray specifically for the ones who don't have insurance or were refused by insurance because of their condition. Medicaid does not cover bandaging supplies. And even some insurance companies will not cover them. RIDICULOUS. We are beyond blessed, but so many others are not as lucky. That's why donating to DebRA is so awesome. Not only does the money go to finding a cure, a portion goes to providing financial and material support for families who are struggling to foot the $3,000 to $8,000 a month cost for supplies.

As always, thank you so much for praying.