I'm feeling a little blue tonight. I just got trapped in Harris Teeter for a while (have no idea how long) because of a bad storm and still had to eventually give in and go out. Soaked to the bone, loading groceries, afraid of lightening, no fun. That's not why I'm blue but the weather has kind of reflected my mood.
And I've missed my run the last two nights because of storms. It's not that I crave the running (don't be crazy) but I crave the time with my friend, Barbara, and I crave being outside. AND, I haven't run since Friday, and I just don't want to take any steps back.
But the real reason I'm blue and what's motivating the funktification of everything else...
We have lost three EB babies in the last five days.
The first was Lucas, one month old, with Junctional-Herlitz. His dad and I corresponded by email early last week. He passed away on Friday.
The second was Baby AJ, 14 weeks old. I'm not sure what type he had, but he died on Sunday.
And the third, Friends, was sweet Baby Malachi, two months old, the baby boy I had the privilege of getting to know and help with for a few weeks in April and early May. He was here at our local NICU, and his mom and I have regularly emailed back and forth and shared several phone calls since they've been home. They had just found out he was Junctional-Herlitz. He died on Monday morning.
When I think about the three families who have just had their tiny babies ripped from them, I think about the loss of our own tiny baby, and I think about all the things that EB takes away from Jonah, from our family and from countless other families all over the world, it makes me so angry. Why is it allowed to rob us of so much?
Run free, sweet babies. Our hearts are breaking, but your hearts are full, and your skin is whole.
Tuesday, June 28, 2011
Monday, June 27, 2011
this and that
Sorry for a few days without updates. Sometimes sleep just wins. :)
We are doing well. Jonah is finally healthy after the week of stomach virus followed by a week of respiratory issues. He's been doing well for about a week now, and I hope we can keep it that way. I have a cold or sinus infection though, so we still didn't make it to church on Sunday. I miss my church family very much. I just needed the sleep and felt terrible. I didn't feel like it was a good idea to get up at 6:45 to do the whole rushed get everyone ready (which includes Jonah's bath and bandage changes) to make it. I felt like poop for a couple of days, but besides some congestion and coughing, I'm feeling better today.
Matt's mom stayed with her dad for five weeks, caring for him without much change in his condition. Last week, they came to a mutual decision to move him into a rehab facility. I think that is so good. He needs professionals who can force him to work and get his muscles moving again. Anyway, on Sunday, Debbie was working in his closet trying to get things sorted and packed, she fell and broke her hand in four places. Matt's dad had some friends offer to drive him up here last night, so he came up and drove her home in her van today after they got Grandaddy settled. Needless to say it's been kind of a crappy several weeks for her and ending it by breaking your dominant hand just one week before your beach vacation pretty much stinks. I know she would love your prayers. She's been so good to us, and I feel pretty useless not being able or not knowing how to help her back.
On Sunday afternoon, Matt and I took our first aid/CPR class for adoption. One 1/2 day down. I think that makes us 1/10 of the way there, class wise. And we have to finish our classes before we can do anything else, so I'm eager to get them underway. We will take our MAPP classes all day on four consecutive Saturdays starting July 16th. Then we'll have to take a medication administration class in September. I think we can get started with paper work and stuff before we take that last class though, so hopefully we'll be well underway by mid to late August.
Okay, I'm off to bed. Couch to 5K was stormed out tonight, so Matt and I worked a couple of hours in the garage and then came upstairs and had some celebratory (absolutely delicious) chocolate cookies my neighbor sent home with me. Oh, what neighbor you may ask? Why, my running partner neighbor, that's who. She inspires and encourages me for both good and evil.
Hope you're all having a good week.
We are doing well. Jonah is finally healthy after the week of stomach virus followed by a week of respiratory issues. He's been doing well for about a week now, and I hope we can keep it that way. I have a cold or sinus infection though, so we still didn't make it to church on Sunday. I miss my church family very much. I just needed the sleep and felt terrible. I didn't feel like it was a good idea to get up at 6:45 to do the whole rushed get everyone ready (which includes Jonah's bath and bandage changes) to make it. I felt like poop for a couple of days, but besides some congestion and coughing, I'm feeling better today.
Matt's mom stayed with her dad for five weeks, caring for him without much change in his condition. Last week, they came to a mutual decision to move him into a rehab facility. I think that is so good. He needs professionals who can force him to work and get his muscles moving again. Anyway, on Sunday, Debbie was working in his closet trying to get things sorted and packed, she fell and broke her hand in four places. Matt's dad had some friends offer to drive him up here last night, so he came up and drove her home in her van today after they got Grandaddy settled. Needless to say it's been kind of a crappy several weeks for her and ending it by breaking your dominant hand just one week before your beach vacation pretty much stinks. I know she would love your prayers. She's been so good to us, and I feel pretty useless not being able or not knowing how to help her back.
On Sunday afternoon, Matt and I took our first aid/CPR class for adoption. One 1/2 day down. I think that makes us 1/10 of the way there, class wise. And we have to finish our classes before we can do anything else, so I'm eager to get them underway. We will take our MAPP classes all day on four consecutive Saturdays starting July 16th. Then we'll have to take a medication administration class in September. I think we can get started with paper work and stuff before we take that last class though, so hopefully we'll be well underway by mid to late August.
Okay, I'm off to bed. Couch to 5K was stormed out tonight, so Matt and I worked a couple of hours in the garage and then came upstairs and had some celebratory (absolutely delicious) chocolate cookies my neighbor sent home with me. Oh, what neighbor you may ask? Why, my running partner neighbor, that's who. She inspires and encourages me for both good and evil.
Hope you're all having a good week.
Thursday, June 23, 2011
last weekend
First of all, sorry to scare you guys with the below video. I promise I would use words if there were any drastic change in any of the EB kids' conditions, especially Tripp's. I didn't know he was going to be the freeze frame when I posted it. Sorry I gave many of you a heart attack. I know Tripp would probably be "mean" to me (smile), but I would LOVE to go to Louisiana to meet him. I love that kid.
The Cannells are in Eastern Europe now (left on Monday) to spend 8 weeks doing all kinds of legal stuff, court dates, traveling, waiting etc to get their boys! Because of several different blogs posting, a couple of fundraisers, and a MIRACLE from God, they raised all the money they needed (over $40,000) in just a few weeks. WOW! If you aren't following their story, Karrie is updating on their blog HERE.
Okay, now to our weekend. Even though Jonah wasn't breathing great, we tried to get him out a little this weekend. It has been very hot here so we tried to get him out while we could. Kernersville was having their Summerfest with live beach music, food vendors and a few rides. Mom kept Jonah one night so Matt and I could go, and then we took Jonah a couple nights later.
Last week's Project 52 theme was "Make it Tasty," so I took lots of photos of food, before settling on the topping dispenser photo. Matt and I went to a frozen yogurt place after this. It was all in the name of Project 52, I swear.
DINNER! Yum.
This photo is blurry because I had to crop it way in, but I thought this was hilarious.
Matt wanted me to take a picture of him in Las Vegas.
'
"I know you want to take a photo of me with the train, Mom, but this isn't exactly natural."
I die.
Nana bought Jonah a bubble gun! Coolest toy ever. Matt has enjoyed it as well.
About as close to the train as he would get. He really did love it (screaming in excitement: Choo-Choo, TRAIN!, All Aboard!, Chugga-Chugga, Here it comes!) but he just wanted to love it from a distance.
I die. Again.
This picture is funny and a little sad. He wanted to love the fire truck from WAY far away.
The Cannells are in Eastern Europe now (left on Monday) to spend 8 weeks doing all kinds of legal stuff, court dates, traveling, waiting etc to get their boys! Because of several different blogs posting, a couple of fundraisers, and a MIRACLE from God, they raised all the money they needed (over $40,000) in just a few weeks. WOW! If you aren't following their story, Karrie is updating on their blog HERE.
Okay, now to our weekend. Even though Jonah wasn't breathing great, we tried to get him out a little this weekend. It has been very hot here so we tried to get him out while we could. Kernersville was having their Summerfest with live beach music, food vendors and a few rides. Mom kept Jonah one night so Matt and I could go, and then we took Jonah a couple nights later.
Last week's Project 52 theme was "Make it Tasty," so I took lots of photos of food, before settling on the topping dispenser photo. Matt and I went to a frozen yogurt place after this. It was all in the name of Project 52, I swear.
DINNER! Yum.
This photo is blurry because I had to crop it way in, but I thought this was hilarious.
Matt wanted me to take a picture of him in Las Vegas.
'I wanted him to take a photo of me in Montana. Sometimes I am certain we could not be more different. (Also, this photo is my motivation to complete Couch to 5K (Day 3 is tomorrow). I've gained 10 lbs in the last 8 months. That's crazy! I feel so crappy about myself. I just want to be healthy!!!)
Matt walked the entire United States and knew every state. Again, with the "we couldn't be more different." I pretty much only knew NC and its surrounding states. And of course the big ones, especially Texas, you know, the state where all my friends are moving. That one. (Thanks to Matt for showing me which one Montana was! To my credit, I did know its general whereabouts.)
Trying to tell Jonah that he loves trains, remember?
"I know you want to take a photo of me with the train, Mom, but this isn't exactly natural."
I die.
Nana bought Jonah a bubble gun! Coolest toy ever. Matt has enjoyed it as well.
About as close to the train as he would get. He really did love it (screaming in excitement: Choo-Choo, TRAIN!, All Aboard!, Chugga-Chugga, Here it comes!) but he just wanted to love it from a distance.
I die. Again.
This picture is funny and a little sad. He wanted to love the fire truck from WAY far away.
Wednesday, June 22, 2011
No words...
I love Tripp and all these other EB Sweeties (and their parents) so very much.
http://thebutterflyfund.org
http://thebutterflyfund.org
Tuesday, June 21, 2011
our God of miracles
Very quickly because it's been an exhausting day.
Jonah cried all morning because of the steroids. By the time I got him on the bandage change table, he had been crying for about two hours straight. Because I had his torso bandages off, I could see that he was retracting at his rib cage and his breathing had become much more rapid.
I called my mom to come over and Matt to come home from work.
By the time they arrived, Jonah's breathing had become more stable (still sounded bad, but didn't seemed distressed anymore). Matt and I decided to take him to the hospital. We called the pediatrician and they set it up for us to go to the ER, with the understanding that we would be taken straight back, evaluated by the attending ER doc, and then his ENT would be paged. They had spoken with both the ER attending and Jonah's ENT so everyone was on board. Since he had stabilized, we were told it was okay to wait a couple of hours so we let Jonah take a nap. While he slept we packed EVERYTHING in case we were admitted - everything we could think up he might would eat by mouth, all his medicines, his g-tube stuff (for his water and meds), bandaging materials, toys, the laptop and DVD's etc. All we had left to do was change his diaper when he woke up, and then we would be on our way. For six days he had been having terrible growling type stridor and a hoarse voice. For six days I've been worried non-stop about my Sweet Boy's breathing.
He woke up.
He was breathing easy, no stridor, and had more of a voice than he's had since last Thursday. (I guess he had a blister and it finally popped in his sleep?) That Legion of Angels seems to still be protecting him, even now.
We're never alone. Praise God!
Oh, I guess you got that we never had to go to the hospital? Life is good.
Thank you so much for your prayers.
Jonah cried all morning because of the steroids. By the time I got him on the bandage change table, he had been crying for about two hours straight. Because I had his torso bandages off, I could see that he was retracting at his rib cage and his breathing had become much more rapid.
I called my mom to come over and Matt to come home from work.
By the time they arrived, Jonah's breathing had become more stable (still sounded bad, but didn't seemed distressed anymore). Matt and I decided to take him to the hospital. We called the pediatrician and they set it up for us to go to the ER, with the understanding that we would be taken straight back, evaluated by the attending ER doc, and then his ENT would be paged. They had spoken with both the ER attending and Jonah's ENT so everyone was on board. Since he had stabilized, we were told it was okay to wait a couple of hours so we let Jonah take a nap. While he slept we packed EVERYTHING in case we were admitted - everything we could think up he might would eat by mouth, all his medicines, his g-tube stuff (for his water and meds), bandaging materials, toys, the laptop and DVD's etc. All we had left to do was change his diaper when he woke up, and then we would be on our way. For six days he had been having terrible growling type stridor and a hoarse voice. For six days I've been worried non-stop about my Sweet Boy's breathing.
He woke up.
He was breathing easy, no stridor, and had more of a voice than he's had since last Thursday. (I guess he had a blister and it finally popped in his sleep?) That Legion of Angels seems to still be protecting him, even now.
We're never alone. Praise God!
Oh, I guess you got that we never had to go to the hospital? Life is good.
Thank you so much for your prayers.
Monday, June 20, 2011
breathing update
I took Jonah to the doctor at noon, and here's the skinny.
He's still moving air well and although he sounds HORRIBLE, he doesn't seem to be in any distress and is getting the oxygen he needs. If things stay as they are, he will be okay for now. If he's not better after 72 hours on the steroids (Wed night), we will have to see the ENT at the hospital (bronchoscopy? admission?) on Thursday.
If things worsen (he stops playing, begins breathing rapidly and is struggling, struggles talking, won't sleep, retraction etc.), we will be headed to the hospital. I asked the doctor to call the ENT at the hospital to give the department an idea of what's going. I'm trying to work it out to where if we do have to go to the hospital, we can get a direct admission through ENT rather than having to go to the emergency room.
In other news, having to suffer Jonah on steroids until Thursday morning is going to make me batty. Like seriously, y'all will be checking me in cause I'll have checked out. Prednisone, I loathe you (but also love you... funny).
He's still moving air well and although he sounds HORRIBLE, he doesn't seem to be in any distress and is getting the oxygen he needs. If things stay as they are, he will be okay for now. If he's not better after 72 hours on the steroids (Wed night), we will have to see the ENT at the hospital (bronchoscopy? admission?) on Thursday.
If things worsen (he stops playing, begins breathing rapidly and is struggling, struggles talking, won't sleep, retraction etc.), we will be headed to the hospital. I asked the doctor to call the ENT at the hospital to give the department an idea of what's going. I'm trying to work it out to where if we do have to go to the hospital, we can get a direct admission through ENT rather than having to go to the emergency room.
In other news, having to suffer Jonah on steroids until Thursday morning is going to make me batty. Like seriously, y'all will be checking me in cause I'll have checked out. Prednisone, I loathe you (but also love you... funny).
Sunday, June 19, 2011
to my daddy
Dear Daddy,
Mommy and I just wanted to say (even though it's almost not Father's Day anymore) how much we love you and appreciate you. Daddy, you are seriously THE BEST dad in the whole world. Mommy or I just can't imagine our life without you, and we don't want to. I know when I came along, I kind of blew your concept of "normal" out of the water, but you have been so great at going with the flow and learning how to perfectly care for me. But even though you take such good care of me, you also still let me live. You don't hold back on the wrestling, the ball playing, and all the good things boys should get to do. You make sure I FULLY live and realize that that is part of taking care of me too. Mommy can't believe that before I came along, you had never even changed a diaper. You are amazing, Daddy. I love our play times, our quiet times, and most especially our night night times. The way you read me book after book and never rush our rocking and singing time is so great. Thank you for never seeing time with me as a hassle or something you have to do, but always valuing it as a privilege. You are my hero.
Thank you for the bubbles...
the snuggles...
for always keeping us laughing...
and lightening the mood...
for the swinging...
for the wrestling...
the quality time...
the kisses...
the "Jonah slams"...
the laughs...
the smiles...
the love...
and all the hugs.
Mommy and I can never thank you enough for the man and Daddy you are. We are so thankful, so grateful, so blessed. We love you, Daddy. Happy Father's Day.
Love,
Jonah and Mommy
jonah's breathing - update 2
Matt's mom wasn't super scared about Jonah's breathing. (She's a nurse.) She thinks we're fine to wait until tomorrow as long as he doesn't get worse. He's still running and playing and talking, and she said he'd be taking more breaks and having to stop and breathe if he was in too much distress. She says his fingernail beds (he has only two actual fingernails left) are still nice and pink, and they would be one of the first things to go blue if he wasn't getting enough oxygen.
But we will be turning back on the breathing part of his Angel Care monitor tonight, just to make sure.
Thank you for all your prayers. I would like to do a Father's Day post later on tonight but am not sure how much energy I'll have (stupid yard sale prep). I'll definitely give a Jonah update tomorrow after we go to the doctor. Not sure what time they'll be able to see us.
But we will be turning back on the breathing part of his Angel Care monitor tonight, just to make sure.
Thank you for all your prayers. I would like to do a Father's Day post later on tonight but am not sure how much energy I'll have (stupid yard sale prep). I'll definitely give a Jonah update tomorrow after we go to the doctor. Not sure what time they'll be able to see us.
jonah's breathing - update
Jonah's breathing is a little worse today. Matt's mom is coming over (still in town, caring for her dad) to listen to him and help us decide if we can wait until tomorrow to take him in. The Emergency Department would pretty much be the most dangerous place for him germ wise, and maybe even skin wise since it would be doctors and nurses who don't know him or what EB is. I've also put in a call to the after hours doctor, and we're getting some oral prednisone called in (evil baby, here we come). So hopefully that will help keep us until we can get him to the doctor tomorrow. Ugh.
Please keep praying.
Please keep praying.
Saturday, June 18, 2011
quick prayer request
This will be quick because Matt and I are going to work on organizing the garage/start yard sale pricing stuff tonight. But I did want to mention that Jonah has been really hoarse and wheezing for the last three days. Matt and I suspect he has some blistering in his trachea and so his airway is at least partially constricted. I talked to Dr. Heather (his NICU doctor) today and described what was going on. She said she doesn't think he's in immediate danger yet (not retracting, color is good), but that if he gets any worse (stridor gets louder, retracting, color changes, rapid breathing), we need to take him into the Emergency Department. If he stays the same, I'll take him to the pediatrician on Monday. But hopefully he'll be fully restored by then.
Trying not to get discouraged with "It's always something" and be thankful. It doesn't help my attitude much that I spent the entire day sorting and pricing TONS of baby boy clothes, hardly any of which either of my sweet boys ever got to wear. So much of it is new and has only been washed twice - once before Gabe and once before Jonah. And there are also many many things that are new with tags. Having to sell them feels so... final. I don't know. I shed some tears. It's been hard. Anyway, we're having a yard sale on July 9th, so if you live close by and you have a baby boy, you should come. I would love some of these clothes to go to families who know our story. Either way, it's time to close the door on old dreams and start focusing on our new ones.
No church for us tomorrow given Jonah's fragile state right now, but I hope all of you have a blessed weekend.
I'll keep you posted on Jonah if there is any change, one way or the other. As always, thank you for your prayers.
Trying not to get discouraged with "It's always something" and be thankful. It doesn't help my attitude much that I spent the entire day sorting and pricing TONS of baby boy clothes, hardly any of which either of my sweet boys ever got to wear. So much of it is new and has only been washed twice - once before Gabe and once before Jonah. And there are also many many things that are new with tags. Having to sell them feels so... final. I don't know. I shed some tears. It's been hard. Anyway, we're having a yard sale on July 9th, so if you live close by and you have a baby boy, you should come. I would love some of these clothes to go to families who know our story. Either way, it's time to close the door on old dreams and start focusing on our new ones.
No church for us tomorrow given Jonah's fragile state right now, but I hope all of you have a blessed weekend.
I'll keep you posted on Jonah if there is any change, one way or the other. As always, thank you for your prayers.
Friday, June 17, 2011
Wednesday, June 15, 2011
better!
Sweet Jonah has done much better the last two days. He still had diarrhea yesterday, but did not throw up. This morning's poopy was not nearly as runny (sorry, y'all), and no pukes again! Tomorrow we'll be moving up to seven ounces a meal, hopefully! Thank you so much for the prayers. It was just lasting so long and was so sporadic, I was starting to get freaked out. Your comments were so comforting. The normal stuff is just so scary because I don't know if it's normal or EB related. (I mean, he eats his freakin' bandages... seriously???)
I've been feeling a little sorry for myself (and Jonah, of course) over the last couple of weeks. We've just not gotten out much and we can't go to the pool and he can't play outside. He's feeling the effects of being cooped up and has been really whiney the last couple of days. My patience has been low, and I feel like I've been snapping at him more the last couple of days. I think we're both just a little stir crazy so I'm going to try to get us out somewhere tomorrow and Friday, just because we are driving each other crazy. :) He's so good, though. And I really really shouldn't complain. I've really been convicted today about how much we, as Americans especially, complain SO MUCH about EVERYTHING (it's too hot, it's too cold, stop raining, oh we need rain so bad, I hate my job, I want to be a stay-at-home-mom, my kids are driving me nuts, I have to get out of this house, There's nothing to eat (really?), My air condition is broken... and on and on and on). It just made me sad to think about. You know that verse about always being ready to give a reason for the hope that you have (I Peter 3:15)? Well, ain't nobody gonna ask me about my hope if I don't have any. O-U-C-H. My life and my attitude should look different. I should be and feel like an alien in my air conditioned house, my mini-van, and with my full pantry. If we're just going through the motions, living like everyone else, and complaining with the rest of them, we're not being much of a light. And we're surely not living in the joy and hope that comes with a true life in Christ. Well, kick my butt and call me Sally. That. Just. Hurt.
Anyway, I'm thinking A LOT these days. That's not always a good thing.
Hey, wanna see some cute shots of Jonah? Alrighty then.
I've been feeling a little sorry for myself (and Jonah, of course) over the last couple of weeks. We've just not gotten out much and we can't go to the pool and he can't play outside. He's feeling the effects of being cooped up and has been really whiney the last couple of days. My patience has been low, and I feel like I've been snapping at him more the last couple of days. I think we're both just a little stir crazy so I'm going to try to get us out somewhere tomorrow and Friday, just because we are driving each other crazy. :) He's so good, though. And I really really shouldn't complain. I've really been convicted today about how much we, as Americans especially, complain SO MUCH about EVERYTHING (it's too hot, it's too cold, stop raining, oh we need rain so bad, I hate my job, I want to be a stay-at-home-mom, my kids are driving me nuts, I have to get out of this house, There's nothing to eat (really?), My air condition is broken... and on and on and on). It just made me sad to think about. You know that verse about always being ready to give a reason for the hope that you have (I Peter 3:15)? Well, ain't nobody gonna ask me about my hope if I don't have any. O-U-C-H. My life and my attitude should look different. I should be and feel like an alien in my air conditioned house, my mini-van, and with my full pantry. If we're just going through the motions, living like everyone else, and complaining with the rest of them, we're not being much of a light. And we're surely not living in the joy and hope that comes with a true life in Christ. Well, kick my butt and call me Sally. That. Just. Hurt.
Anyway, I'm thinking A LOT these days. That's not always a good thing.
Hey, wanna see some cute shots of Jonah? Alrighty then.
Whiney or not. Summer or not. Crazy Momma or not. I love this kid. I love my life, no matter what it looks like. I have lots and lots and lots of hope. Now, come on, ask me. Cause I've got a whole bunch of reasons. :)
Monday, June 13, 2011
jonah is still sick :(
I'm feeling sad and confused tonight about Jonah's mysterious illness. He wakes up with diarrhea (like major blow-out diarrhea) every morning but then doesn't have it again all day. When he's healthy, we give him 8 oz of tube feed in the morning, 7.5 oz at lunch, and 7 oz at night. For the last several days, we've been doing 6 oz at breakfast, 5 oz at lunch, and 6 oz at dinner. And he's still throwing up at least one meal each day. I thought he was doing better today because he held down breakfast and lunch, but then he puked his entire dinner. I called the doctor and of course they think it's a virus and said to do Pedialyte. Thanks. But here's the thing, if it's a stomach bug, why haven't Matt or I caught it? We're on day five, and I thought most stomach bugs were highly contagious.
Irrational Fear #1: Jonah chews on his Tubifast (outer sock type bandaging) at night and eats the strings (that's not the fear; that's truth). Could he be developing some kind of blockage?
Irrational Fear #2: He has some sort of bacterial infection that's making him have stomach issues.
Irrational Fear #3: Some food I'm mixing with his tube feeds is bad?
I don't know, but something about it just doesn't seem typical to me. He's not lethargic or puny and doesn't act like he feels bad at all between the puking. He's normal Jonah, but with puking and diarrhea. It's weird.
And how long do I give it before I take him to the doctor? And even when I do, what are they going to do? Is it worth it to expose him to even more germs? Today was Day Five. He's having maybe three wet diapers a day.
In other news, I'm doing a whole lot of youtube surfing for beginner guitar lessons after J is down for the night. I tweeted this photo last night.
Irrational Fear #1: Jonah chews on his Tubifast (outer sock type bandaging) at night and eats the strings (that's not the fear; that's truth). Could he be developing some kind of blockage?
Irrational Fear #2: He has some sort of bacterial infection that's making him have stomach issues.
Irrational Fear #3: Some food I'm mixing with his tube feeds is bad?
I don't know, but something about it just doesn't seem typical to me. He's not lethargic or puny and doesn't act like he feels bad at all between the puking. He's normal Jonah, but with puking and diarrhea. It's weird.
And how long do I give it before I take him to the doctor? And even when I do, what are they going to do? Is it worth it to expose him to even more germs? Today was Day Five. He's having maybe three wet diapers a day.
In other news, I'm doing a whole lot of youtube surfing for beginner guitar lessons after J is down for the night. I tweeted this photo last night.
Don't worry. I've learned how to spell "chord" since I took this. I'm making great progress.
I have most of the major (and a couple minor) chords written out, so now it's just time to practice learning them without looking/counting and switching between them. No biggie, right? And I have to say, you think guitarists just get up there and strum. But I am not good at improvisation. I can't "just strum." I need you to show me your right hand too youtube video people! Not all of us can just make it sound right. Some of us need order and rules and exact instructions for everything we do in life. Dang it. (I'm going to be a terrible go-with-the-flow, laid back musician.)
But back to the stuff that really matters. I would love for you guys to pray for Jonah's health and for clarity and discernment on our part. EB makes everything so much scarier, and you don't want to just run him to the doctor for any little thing. He's likely to pick up something just as bad, if not worse, there. It's always a question of how long to wait it out and when to take him in and what tests/procedures you can put him through that will do more good than harm. Prayers are definitely appreciated.
Sunday, June 12, 2011
Spicy Shrimp and Grits
A couple people have asked for my Shrimp and Grits recipe. It's from Cooking Light, and Matt says it's the best Shrimp and Grits he's ever had and says it's his favorite thing that I make.
Ingredients:
Ingredients:
- 3 cups 1% low-fat milk
- 1 cup water
- 1 tablespoon butter
- 1/2 teaspoon salt, divided
- 1/4 teaspoon black pepper, divided
- 1 cup uncooked quick-cooking grits
- 1/2 cup (2 ounces) grated fresh Parmesan cheese
- 4 slices applewood-smoked bacon
- 1 pound peeled, deveined large shrimp
- 1 cup thinly vertically sliced white onion
- 2 cups grape tomatoes, halved
- 1 teaspoon hot pepper sauce or chopped chipotle chile, canned in adobo sauce
- 1/8 teaspoon ground or crushed red pepper
- 1/4 cup green onion strips
- 1. Combine milk, water, butter, 1/4 teaspoon salt, and 1/8 teaspoon black pepper in a saucepan over medium-high heat. Bring to a simmer; gradually add grits, stirring constantly with a whisk. Reduce heat to medium; cook 4 minutes or until thick, stirring occasionally. Remove from heat; stir in cheese.
- 2. While grits cook, cook bacon in a large nonstick skillet over medium heat until crisp. Remove bacon from pan, reserving 2 teaspoons drippings; crumble bacon. Add shrimp to drippings in pan; cook 2 minutes on each side or until done. Remove shrimp from pan. Add white onion to pan; sauté 1 minute. Stir in bacon, tomatoes, remaining 1/4 teaspoon salt, and remaining 1/8 teaspoon black pepper; sauté 2 minutes, stirring occasionally. Add shrimp, pepper sauce, and red pepper; cook 1 minute or until shrimp are heated. Serve over grits; sprinkle with green onions.
Serves 4 (unless one of those four is Matt)
I think preparing it as written makes is super hot. I half the hot sauce and red pepper and it's still plenty hot. I don't typically have peppers in adobo sauce, so I just use Tabasco or Texas Pete. And I typically use cheddar instead of parmesan. You can get the raw, deveined, peeled shrimp (frozen) at Walmart (I know, I know... I'm so two faced.) And if I don't have green onion, I just leave it out. It's still super tasty. (And I leave the tomatoes out of Matt's part.)
For a printable version, click HERE.
Hope you like it. Let me know if you try it.
Saturday, June 11, 2011
a couple of great finds!
Jonah is on about day three of being sick. I kept hoping it was a fluke but he has had diarrhea for the last three or four days, and he has puked one meal today, two meals yesterday, two the day before, and one or two the day before that. And not to be too graphic, but I know it's different from his normal throwing up because of when it happens, how often it's happening, and how violent it is. Poor buddy. He doesn't act like he feels bad in between but he's definitely not getting much nourishment. I think he only had two, maybe three, wet diapers today. We're running Pedialyte over his night pump instead of water in an attempt to keep him hydrated. So no church for us tomorrow. I love church. I hate that we can't be more consistent. It seems like it's always something.
It was way too hot to take Jonah out today, but I did get to get out a couple different times, and I've felt like a new person. It's amazing how much getting out of the house makes a difference in my mood. Mom and I went yard-saleing this morning, and it was so much fun. We didn't find a lot of great ones, but I loved spending the time with her and just getting out. I told her it was probably the second time I can remember since Jonah has come home from the NICU that I've gotten up, showered, and put on real clothes first thing. Typically I shower but have to put on crappy clothes for bandage changes and don't make it into real clothes until after lunch time, if at all. It felt good to get up and to get to go out and do something before bandages. We left the house at 7:30 and I was home by 10:30 to do "new wraps." Matt is so great and understanding about my need to get out and have some "me time". He did all the morning stuff himself, and did not complain a bit. He loves spending time with Jonah. Imagine that. :) I am so blessed.
I did get one GREAT yard sale find.
(Just ignore the pasty legs. I don't get much Vitamin D.) YEP, I'm realizing my dream. I'm currently trying to learn from youtube, but it's not going so well. Thankfully I have a friend from church who's offered to sit down with me and teach me a couple of things so I can understand the internet stuff better. They're not starting basic enough for me, apparently. :) I'm so excited. I've wanted to learn to play guitar for so long. It only cost me $25 but then I had to spend another $37 to get it tuned, the neck adjusted, for a tuner, picks, and my Mommy bought me a strap. She just got me an "ugly brown one" and says I can graduate to a better strap as I get better... like in karate, she says.
This afternoon, Matt's mom came and watched Jonah for a couple hours so we could go furniture shopping. We found the PERFECT table at the Colfax Clearance store.
It was a $1,100 table and we got it for half of that. It's got scratches, but with some furniture polish and those furniture markers, I don't think anyone will be able to tell. Compared to some stuff we had seen, we felt like it was a really good deal. We needed a table with a bench because the space we have for a table is super narrow, so we needed to be able to push the bench all the way under the table when not in use. It's perfect! (And was already assembled.) We also got some bunkie boards for our bunk beds and a full mattress for the bottom one. We already have a twin mattress, so once we get everything assembled, we should be all set house wise.
Besides Jonah being sicky, it's been a good day. Praying he feels much better tomorrow. Hope you're having a great weekend!
It was way too hot to take Jonah out today, but I did get to get out a couple different times, and I've felt like a new person. It's amazing how much getting out of the house makes a difference in my mood. Mom and I went yard-saleing this morning, and it was so much fun. We didn't find a lot of great ones, but I loved spending the time with her and just getting out. I told her it was probably the second time I can remember since Jonah has come home from the NICU that I've gotten up, showered, and put on real clothes first thing. Typically I shower but have to put on crappy clothes for bandage changes and don't make it into real clothes until after lunch time, if at all. It felt good to get up and to get to go out and do something before bandages. We left the house at 7:30 and I was home by 10:30 to do "new wraps." Matt is so great and understanding about my need to get out and have some "me time". He did all the morning stuff himself, and did not complain a bit. He loves spending time with Jonah. Imagine that. :) I am so blessed.
I did get one GREAT yard sale find.
(Just ignore the pasty legs. I don't get much Vitamin D.) YEP, I'm realizing my dream. I'm currently trying to learn from youtube, but it's not going so well. Thankfully I have a friend from church who's offered to sit down with me and teach me a couple of things so I can understand the internet stuff better. They're not starting basic enough for me, apparently. :) I'm so excited. I've wanted to learn to play guitar for so long. It only cost me $25 but then I had to spend another $37 to get it tuned, the neck adjusted, for a tuner, picks, and my Mommy bought me a strap. She just got me an "ugly brown one" and says I can graduate to a better strap as I get better... like in karate, she says.
This afternoon, Matt's mom came and watched Jonah for a couple hours so we could go furniture shopping. We found the PERFECT table at the Colfax Clearance store.
It was a $1,100 table and we got it for half of that. It's got scratches, but with some furniture polish and those furniture markers, I don't think anyone will be able to tell. Compared to some stuff we had seen, we felt like it was a really good deal. We needed a table with a bench because the space we have for a table is super narrow, so we needed to be able to push the bench all the way under the table when not in use. It's perfect! (And was already assembled.) We also got some bunkie boards for our bunk beds and a full mattress for the bottom one. We already have a twin mattress, so once we get everything assembled, we should be all set house wise.
Besides Jonah being sicky, it's been a good day. Praying he feels much better tomorrow. Hope you're having a great weekend!
Friday, June 10, 2011
a typical day
These days, things are pretty much the same around here. When folks ask how things are going or how we're doing, I say something like, "Our life pretty much stays the same."
Matt gets up and goes to work (except on the days he doesn't), I get up, get ready, Jonah wakes up, poops his diaper, I go get him up, he stands up sweetly and sometimes greets me with "Hi, Mommy" and a wave, we do a diaper change, and then he gets his breakfast tube feed.
While he's "eating" breakfast, I unload and load the dishwasher, check email, catch up on Google Reader, eat breakfast, and make Jonah's next three tube meals.
Then we do bath and bandage change (or "new wraps" as I've been calling them to Jonah lately).
Then Jonah plays for about a half hour and then he goes down for a nap. He typically sleeps for an hour and a half. I eat lunch, relax a little, and make any important phone calls that are hard to make when he'syelling in my ear awake.
Then he gets up, we do another diaper change, and then we usually try lunch by mouth, complimented by tube if needed.
AND THEN HE FINALLY GETS TO REALLY PLAY FOR THE FIRST TIME OF THE DAY. It's typically 2:30 or after before he gets real free time. And he takes advantage of it.
On days Daddy is home, sometimes he builds Jonah a tunnel.
We play trucks. Lots and lots and lots of trucks.
We watch lots of television (don't judge; we can't go outside).
There's lots of fake falling down and "a-slams" ("Jonah slams" where he jumps on Daddy or me or whomever else happens to be over at our house at the moment)...
... lots of running around squealing in delight...
... lots of smiling, talking, and generally looking adorable...
... and lots ofbothering playing with Deac, ofttimes much to his dismay.
Matt gets up and goes to work (except on the days he doesn't), I get up, get ready, Jonah wakes up, poops his diaper, I go get him up, he stands up sweetly and sometimes greets me with "Hi, Mommy" and a wave, we do a diaper change, and then he gets his breakfast tube feed.
While he's "eating" breakfast, I unload and load the dishwasher, check email, catch up on Google Reader, eat breakfast, and make Jonah's next three tube meals.
Then we do bath and bandage change (or "new wraps" as I've been calling them to Jonah lately).
Then Jonah plays for about a half hour and then he goes down for a nap. He typically sleeps for an hour and a half. I eat lunch, relax a little, and make any important phone calls that are hard to make when he's
Then he gets up, we do another diaper change, and then we usually try lunch by mouth, complimented by tube if needed.
AND THEN HE FINALLY GETS TO REALLY PLAY FOR THE FIRST TIME OF THE DAY. It's typically 2:30 or after before he gets real free time. And he takes advantage of it.
On days Daddy is home, sometimes he builds Jonah a tunnel.
We play trucks. Lots and lots and lots of trucks.
We watch lots of television (don't judge; we can't go outside).
There's lots of fake falling down and "a-slams" ("Jonah slams" where he jumps on Daddy or me or whomever else happens to be over at our house at the moment)...
... lots of running around squealing in delight...
... lots of smiling, talking, and generally looking adorable...
... and lots of
While he plays I'm either being productive or not. But regardless, I wash, dry, and fold this load of laundry every day. It's the dressing change load. I put it in the wash right after bandage changes and get it cleaned and folded for the next day (outfit, diaper, and socks subject to change).
Around 6:15, we put his pajamas on, drain his blisters, and cover his visible wounds in Polysporin. Then it's to the high chair for dinner.
After dinner, we go downstairs to set up for the next morning's dressing change, let Jonah play with his downstairs toys for a while, and then it's back upstairs and soon off to bed. Before bed, we change his diaper, put on his night tube, put hand sanitizer on his hands, brush and MI paste his teeth with our fingers, and put Aquaphor on his face.
Then, Matt takes him up to bed. I, in the meantime, draw up his morning meds, finish loading and start the dishwasher, put up the clean med syringes from the previous night's dishwasher, and take out the bedroom and kitchen trash.
Then, we relax. Shwoo. It's a good life, but it's certainly hard to deviate much from the schedule. Between three one-hour meals, an hour and a half bath and bandage change, nap time, and all our chores, we utilize most of our minutes when we can so that we can relax for a couple of hours before bed.
I'm not complaining. Just didn't have much to blog about. It's not a normal life, but it's a good life. And I look at it this way, a major need of many foster system kids is structure and routine. We are ALL over that.
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