One year ago today, I wrote this:
After Matt and I finished our visit, I took Amy back to see him. We looked at him for about 10 seconds when he started turning purple. She and I were both freaking out, trying to get someone's attention. Luckily the dermatologist was still in there and was more assertive in getting someone to attend to him. He was purple for what seemed like a really long time before the alarm went off, and everyone went into action. He had stopped breathing, and it took them several minutes to get him breathing again. Amy ran out and got Matt. And for a few minutes, Matt stood and watched them work on Jonah while I cried in an opposite corner of the room. It was extremely scary, and I still have not settled down from it. I'm somewhere between afraid to leave his side for a second and not wanting to be back in there at all.
This night last year I experienced this:
I took a sleeping pill last night (a generic form of Ambien) and had MAJOR hallucinations. I can’t begin to explain how horrible it was, but by the time it was over, Matt was lying on one side of me, his mom on the other, with Matt holding my eyes closed trying to get me to go to sleep. I knew they were both there, but I could either not see them or they looked very scary. All kinds of creatures and figures floated around me (their skin peeling off), all pulling me back trying to take me away. I knew there were two realities – the reality of Matt in the room trying to calm me, and the reality of the hallucinations. One was no more real than the other. I kept saying to Matt, “Where are you? They are trying to take me.” It was the scariest non-reality reality I’ve ever experienced, and unfortunately I remember every detail. I felt Satan’s presence very real there. Although the hallucination was drug-induced, Satan definitely took advantage of my weakness. Between the stress and worry over Jonah, lack of sleep, having to face going home without a baby in my arms again, and the sleep drug, it was a bad night.
Last year, this time, I had seen my baby stop breathing and had thought he was going to die right in front of my eyes (at 37 weeks and one day, just like Gabe). And I had gone home, now for the second time, having given birth but with no baby to take home with me. I had dreamed of demons and zombies coming after me with their skin falling off. This day and night last year was pretty hopeless for me.
What a difference a year makes.
Tonight I go to bed with hope for a cure and hope for Jonah's future. I smile and laugh more than I cry, and I just got to celebrate with my Jonah at the coolest kick-butt party EVAH (about a gazillion birthday party posts to come...).
I'm exhausted, but I'm hoping for sweet dreams.
*********************************
On a side note, between the $7,553.01 from the auction and the donations we got at Jonah's birthday party, DebRA will be receiving $9,222.01. And that's not counting Meg's Avon Event sales or anything that was donated directly to DebRA.
What a difference a year makes.
Sunday, February 28, 2010
Saturday, February 27, 2010
twelve months today
Hi Friends,
It's me, Jonah.
I'm a big boy???!!!
Right on.
Don't tell anybody but on Saturday, I heard Mommy say that the next person who called me a big boy was getting punched in the face. I think she wants me to stay her baby forever.)
I'm getting so big. I weigh 21 lbs 9 oz now. I'm 30 inches tall, and my head circumference is 45 cm. I'm in the 25-50th % for weight and in the 60th % for height and head circumference. Dr. B says my growth is GREAT! I'm staying right on that curve. I'm cool like that.
I have six teeth now. Two on the top and four on the bottom. See?
I have all sorts of noises these days, and I'm babbling like a champ. Mom and Dad can't decide if I'm saying any words yet, although I keep telling them that I'm saying all sorts of things. It's not my fault they haven't learned my language. G seems to be my favorite sound, and my favorite things are growling, blowing raspberries, and fake coughing. Mom is pretty sure I'm trying to say Deac, but it's not quite identifiable yet. I also regularly say Ma Ma and Da Da, but am not really saying them TO Mom and Dad. When I see a photo of our family, I can point out my Mom and Dad when asked. Mommy says I'm so smart.
Usually when you put a book (or in this case a birthday card) in my hands and open it up, I start reading. Most of the time it sounds like this, "ahhhh tickle tickle tickle a guh duh guh duh guh duh." Mom says it's just about the cutest thing she's ever seen.
My favorite songs right now are "Malti," "Do-Re-Mi (Sound of Music)," and "Jump Up." I dance now when I hear music. I LOVE music. It calms me down during dressing change or when I'm upset (like today at the doctor when I had to get four shots and a big vile of blood drawn from my arm).
Between Christmas and my birthday I have lots of new toys. I just opened my birthday presents so I haven't really played with them yet, but my (old) favorites are my ball popper...
my exersaucer...
... my pull back cars that zoom across the floor, and still my basketball goal.
For a kid who can't even crawl yet, I sure am hard to keep up with. Mommy can't leave me alone for five seconds or I've fallen over (on purpose), leaned forward and am about to fall on my face attempting to crawl, or I've rolled half way across the room.
I'm eating a little better these days. I usually drink around 30 ounces a day (27 cal formula) and am starting to show a little more interest in solids. I have a really bad gag reflex though, so right now we're mostly stickin' to purees. Otherwise I puke up not only my baby food, but also my previous bottle. I'm still having gushers every two to three days. Too much information? Oh, my bad.
I'm becoming less and less interested in TV these days (too busy trying to move around), but for a few minutes at a time, Mom can sit me in my new toddler chair and I'll watch some Jack's Big Music Show or Yo Gabba Gabba.
I want to crawl so badly I can barely stand it. I can get my hands out or sometimes my knees up, but I haven't figured out how to do both at the same time. I can put weight on my feet and stand with support, but when Mom tries to lean me over to help me get into a crawl position, instead of going to my knees, I stay on my feet and put my hands on the floor, so my butt's straight up in the air. Mom says I may want to look into Yoga.
Mom and Dad can't believe how far I've come in this last year. On February 27th of last year I was born in TERRIBLE shape. There was not a whole lot of hope for my future. On February 28th, I stopped breathing, and Mom and Dad thought I was going to die. I spent 32 days in the NICU. I had to go back to the hospital over Easter for breathing issues, and have been on the verge of a g-tube more times than I can count (you know, because I don't really count yet). But so far, I've stayed infection free and haven't been back to the hospital (except for doctors' appointments) since last April.
Mom and Dad say they love me sooooo much (they tell me about a MILLION times a day), and they don't take one day for granted.
They are amazed at what I've overcome and what God is doing in my life. They know I have a big story to tell and look forward to many, many, many more years for me to tell it. And thanks so much to all you guys who have come along on the journey. Mom and Dad say to tell you how much they appreciate the love and support. You guys are the BEST!
It's me, Jonah.
Today I turned twelve months old. Mom says that means I'm ONE YEAR OLD. She said that in a big voice and put one finger up on her hand, so I guess it's a pretty big deal.
What's that?
I'm a big boy???!!!
Right on.
Don't tell anybody but on Saturday, I heard Mommy say that the next person who called me a big boy was getting punched in the face. I think she wants me to stay her baby forever.)
I'm getting so big. I weigh 21 lbs 9 oz now. I'm 30 inches tall, and my head circumference is 45 cm. I'm in the 25-50th % for weight and in the 60th % for height and head circumference. Dr. B says my growth is GREAT! I'm staying right on that curve. I'm cool like that.
I have six teeth now. Two on the top and four on the bottom. See?
I have all sorts of noises these days, and I'm babbling like a champ. Mom and Dad can't decide if I'm saying any words yet, although I keep telling them that I'm saying all sorts of things. It's not my fault they haven't learned my language. G seems to be my favorite sound, and my favorite things are growling, blowing raspberries, and fake coughing. Mom is pretty sure I'm trying to say Deac, but it's not quite identifiable yet. I also regularly say Ma Ma and Da Da, but am not really saying them TO Mom and Dad. When I see a photo of our family, I can point out my Mom and Dad when asked. Mommy says I'm so smart.
Usually when you put a book (or in this case a birthday card) in my hands and open it up, I start reading. Most of the time it sounds like this, "ahhhh tickle tickle tickle a guh duh guh duh guh duh." Mom says it's just about the cutest thing she's ever seen.
My favorite songs right now are "Malti," "Do-Re-Mi (Sound of Music)," and "Jump Up." I dance now when I hear music. I LOVE music. It calms me down during dressing change or when I'm upset (like today at the doctor when I had to get four shots and a big vile of blood drawn from my arm).
Between Christmas and my birthday I have lots of new toys. I just opened my birthday presents so I haven't really played with them yet, but my (old) favorites are my ball popper...
my exersaucer...
... my pull back cars that zoom across the floor, and still my basketball goal.
For a kid who can't even crawl yet, I sure am hard to keep up with. Mommy can't leave me alone for five seconds or I've fallen over (on purpose), leaned forward and am about to fall on my face attempting to crawl, or I've rolled half way across the room.
I'm eating a little better these days. I usually drink around 30 ounces a day (27 cal formula) and am starting to show a little more interest in solids. I have a really bad gag reflex though, so right now we're mostly stickin' to purees. Otherwise I puke up not only my baby food, but also my previous bottle. I'm still having gushers every two to three days. Too much information? Oh, my bad.
I'm becoming less and less interested in TV these days (too busy trying to move around), but for a few minutes at a time, Mom can sit me in my new toddler chair and I'll watch some Jack's Big Music Show or Yo Gabba Gabba.
I want to crawl so badly I can barely stand it. I can get my hands out or sometimes my knees up, but I haven't figured out how to do both at the same time. I can put weight on my feet and stand with support, but when Mom tries to lean me over to help me get into a crawl position, instead of going to my knees, I stay on my feet and put my hands on the floor, so my butt's straight up in the air. Mom says I may want to look into Yoga.
Mom and Dad can't believe how far I've come in this last year. On February 27th of last year I was born in TERRIBLE shape. There was not a whole lot of hope for my future. On February 28th, I stopped breathing, and Mom and Dad thought I was going to die. I spent 32 days in the NICU. I had to go back to the hospital over Easter for breathing issues, and have been on the verge of a g-tube more times than I can count (you know, because I don't really count yet). But so far, I've stayed infection free and haven't been back to the hospital (except for doctors' appointments) since last April.
Mom and Dad say they love me sooooo much (they tell me about a MILLION times a day), and they don't take one day for granted.
They think I'm the most beautiful, perfect little boy baby in the whole world.
They are amazed at what I've overcome and what God is doing in my life. They know I have a big story to tell and look forward to many, many, many more years for me to tell it. And thanks so much to all you guys who have come along on the journey. Mom and Dad say to tell you how much they appreciate the love and support. You guys are the BEST!
(Thanks to Aunt Katherine for the photos of me with my ball popper, in my exersaucer, and in my chair.)
happy birthday, jonah
Dear Jonah,
Today you turn one year old. I’m fighting back tears as I write this to you. Some of them are happy tears, some sad. There are so many emotions I feel when I think about this day last year and pretty much all the days since.
Daddy and I waited so long for you. We prayed for you every night on our knees. We could not wait for you to come, but after losing your big brother, we were so scared. The night before you were born, in tears, I cried out to God that he would let you live. I checked your heartbeat every few hours, just to make sure things were still okay. I waited on pins and needles. I hoped.
We went to the hospital very early in the morning, and guess what? I started having contractions on the way. We think it was your way of saying, “I know you guys planned this, but it’s cool. I’m ready to come anyhow. Just lettin’ you guys know that I call the shots.” We waited all day for you.
We were so excited.
Sweet Jonah, you were not what we expected. Something wasn’t right. This was not the way it was supposed to be. Why were your hands, feet, knees, and elbows completely raw? Why were there blisters on your face and head? What was wrong?
But, still, you were perfect.
You were beautiful from the moment you were born. Blonde hair, blue eyes. I could see Gabe in you, but you had your own look. Beautiful. Really, I know everybody says, “All babies are cute,” but most babies look kind of funny and squishy when they’re first born. But not you. You were adorable from the first moment.
We were elated and relieved that you were here, alive and breathing. And we were heartbroken and devastated, terrified that you would not be with us for long.
But here you are today, Jonah, a whole year old.
You’re our miracle.
And you are still completely perfect, beautiful, and you still leave us breathless.
I just want to tell you today how much we love you, how much you’ve changed our lives for the BETTER. You are far more wonderful and amazing than anything I ever could have hoped or dreamed, and I ache for you to know how much we love you. I don’t think we could love you any more if we tried. You’re the light of our lives.
Today you turn one year old. I’m fighting back tears as I write this to you. Some of them are happy tears, some sad. There are so many emotions I feel when I think about this day last year and pretty much all the days since.
Daddy and I waited so long for you. We prayed for you every night on our knees. We could not wait for you to come, but after losing your big brother, we were so scared. The night before you were born, in tears, I cried out to God that he would let you live. I checked your heartbeat every few hours, just to make sure things were still okay. I waited on pins and needles. I hoped.
We went to the hospital very early in the morning, and guess what? I started having contractions on the way. We think it was your way of saying, “I know you guys planned this, but it’s cool. I’m ready to come anyhow. Just lettin’ you guys know that I call the shots.” We waited all day for you.
We were so excited.
Everything was ready.
Then, at 3:50 in the afternoon, God gave us you.
And we were breathless.
Sweet Jonah, you were not what we expected. Something wasn’t right. This was not the way it was supposed to be. Why were your hands, feet, knees, and elbows completely raw? Why were there blisters on your face and head? What was wrong?
But, still, you were perfect.
You were beautiful from the moment you were born. Blonde hair, blue eyes. I could see Gabe in you, but you had your own look. Beautiful. Really, I know everybody says, “All babies are cute,” but most babies look kind of funny and squishy when they’re first born. But not you. You were adorable from the first moment.
We were elated and relieved that you were here, alive and breathing. And we were heartbroken and devastated, terrified that you would not be with us for long.
But here you are today, Jonah, a whole year old.
You’re our miracle.
And you are still completely perfect, beautiful, and you still leave us breathless.
I just want to tell you today how much we love you, how much you’ve changed our lives for the BETTER. You are far more wonderful and amazing than anything I ever could have hoped or dreamed, and I ache for you to know how much we love you. I don’t think we could love you any more if we tried. You’re the light of our lives.
So, Happy First Birthday, my sweet Baby Jonah.
We pray and wait in expectation for many, many, many more.
We pray and wait in expectation for many, many, many more.
Tuesday, February 23, 2010
first time at the park
On Sunday it was in the 60’s here (finally!), so we took Jonah to the park for the first time.
I won’t clog this post with words. He had a great time. As you can see…
I won’t clog this post with words. He had a great time. As you can see…
Sunday, February 21, 2010
bidding tutorial
I wanted to post some photos of Jonah's first time at the park (cell phone picture here) tonight, but Jonah didn't go down until close to 10:00, and I haven't even gotten them off my camera yet... so, hopefully tomorrow.
Just stopping in to let you know that Katie has put up a Bidding Tutorial on the Auction Blog and you can even practice bid, just to make sure you know how it works. It's super easy, and you should definitely try it even if the instructions make it sound complicated (Katie's words), because it's really not hard at all.
So go practice already. All the cool kids are doing it.
Just stopping in to let you know that Katie has put up a Bidding Tutorial on the Auction Blog and you can even practice bid, just to make sure you know how it works. It's super easy, and you should definitely try it even if the instructions make it sound complicated (Katie's words), because it's really not hard at all.
So go practice already. All the cool kids are doing it.
Saturday, February 20, 2010
another guilt-free shopping opportunity
Hi Friends.
We are back from our mini-vacation, and we had a great time. It was so good to be away and get to relax a little bit. I made it all night long. I thought it would be fun to go out to breakfast but was pretty sure I'd wake up at 6:30 and want to come directly home. But I actually made it until 7:15, AND we went out to breakfast. I missed Jonah, but I also remembered how much I love greasy breakfast food - so off we went. We got home, did dressing change, and now Jonah is being SUPER fussy because he hasn't napped enough today and is exhausted. Not sure how we're going to hold a nap off until 4 to coincide with his next feeding. Probably won't happen.
I just wanted to let you guys know that Meg (Leah's mom) is hosting an Avon event where she'll donate 100% of the proceeds of her sales to DebRA. You can get all the details and the purchase code here. Happy Shopping!
(I don't know about you guys but I am LOVING all this guilt-free shopping with all money going to help cure EB. THAT is what I'm talkin' about.)
And in case you haven't been by lately, Katie has put up all the items up for bid on Jonah's Auction Site. The comments are closed until the Auction starts (Feb 23rd, 12:01 am, EST), but you can go preview all the items, make your lists, and plan your strategy. Let the games begin (well, almost, anyway)!
We are back from our mini-vacation, and we had a great time. It was so good to be away and get to relax a little bit. I made it all night long. I thought it would be fun to go out to breakfast but was pretty sure I'd wake up at 6:30 and want to come directly home. But I actually made it until 7:15, AND we went out to breakfast. I missed Jonah, but I also remembered how much I love greasy breakfast food - so off we went. We got home, did dressing change, and now Jonah is being SUPER fussy because he hasn't napped enough today and is exhausted. Not sure how we're going to hold a nap off until 4 to coincide with his next feeding. Probably won't happen.
I just wanted to let you guys know that Meg (Leah's mom) is hosting an Avon event where she'll donate 100% of the proceeds of her sales to DebRA. You can get all the details and the purchase code here. Happy Shopping!
(I don't know about you guys but I am LOVING all this guilt-free shopping with all money going to help cure EB. THAT is what I'm talkin' about.)
And in case you haven't been by lately, Katie has put up all the items up for bid on Jonah's Auction Site. The comments are closed until the Auction starts (Feb 23rd, 12:01 am, EST), but you can go preview all the items, make your lists, and plan your strategy. Let the games begin (well, almost, anyway)!
Friday, February 19, 2010
this and that
Just a quick update before I have to give Jonah his next bottle.
Jonah's doing well and seems to be gushing less these days. He's now going several days in between instead of the nightly requisite puking he was doing a couple weeks ago. I'm thankful and fully realize it probably won't last (it never does), but am thankful for it for now. He had a huge wrap-around blister around his elbow yesterday when we unwrapped him, but other than that he's looking pretty good. His face is in pretty rough shape right now, and his little boy parts are still a little blistered, although better. He's sad several pretty bad nosebleeds this week. I don't really know why. I have a humidifier that runs in his room and a fan on so he doesn't get overheated, but he still gets them. It's kind of a bummer because it makes his inner nose all scabby which tends to pull the skin and make it pretty raw in there. I'm hoping it stops soon.
I had my Girls' Night last night. Only three of the five could make it, but it was still great. We just laugh and talk non-stop, and it's just what the doctor ordered. I'm slowly coming out of this funk of mine, but have lost some serious party planning time. This weekend and next week will be very busy. Nothing like a looming deadline to make you get your butt in gear. I'm kind of just having faith that it will all work out and come together, but I definitely have a lot of facilitating I need to do to make that happen. Matt's mom is coming on Sunday night and Matt can help a lot this weekend, so I should be able to get a lot done.
Matt and I are getting a hotel room here locally tonight, and Kathryn and my sister, Sarah, are coming to keep Jonah OVERNIGHT! It will be really good for us to get away, and we plan to be back by 10:30 in the morning to do dressing change. Matt keeps saying, "I'm gonna sleep 12 hours." Amen, brother. I'm with you. I'm excited about the sleep and relaxation. I'm one of those people who has a REALLY hard time relaxing in my own house if I know there are things that need to be done. I need to get OUT to vacation. But I'm also feeling anxious about leaving and slept horribly last night because of it. I'm not anxious about Jonah's care. I'm anxious about being without him. I'm way more dependent on him than he is on me, I think. Really hoping I'll be able to relax and enjoy it and use the missing him to make the coming back better, not let it ruin our time away. Any prayers for me to chill the heck out are much appreciated. :)
Alright, that's it for me. Bottle time.
Happy (beautiful weather finally!) weekend.
Jonah's doing well and seems to be gushing less these days. He's now going several days in between instead of the nightly requisite puking he was doing a couple weeks ago. I'm thankful and fully realize it probably won't last (it never does), but am thankful for it for now. He had a huge wrap-around blister around his elbow yesterday when we unwrapped him, but other than that he's looking pretty good. His face is in pretty rough shape right now, and his little boy parts are still a little blistered, although better. He's sad several pretty bad nosebleeds this week. I don't really know why. I have a humidifier that runs in his room and a fan on so he doesn't get overheated, but he still gets them. It's kind of a bummer because it makes his inner nose all scabby which tends to pull the skin and make it pretty raw in there. I'm hoping it stops soon.
I had my Girls' Night last night. Only three of the five could make it, but it was still great. We just laugh and talk non-stop, and it's just what the doctor ordered. I'm slowly coming out of this funk of mine, but have lost some serious party planning time. This weekend and next week will be very busy. Nothing like a looming deadline to make you get your butt in gear. I'm kind of just having faith that it will all work out and come together, but I definitely have a lot of facilitating I need to do to make that happen. Matt's mom is coming on Sunday night and Matt can help a lot this weekend, so I should be able to get a lot done.
Matt and I are getting a hotel room here locally tonight, and Kathryn and my sister, Sarah, are coming to keep Jonah OVERNIGHT! It will be really good for us to get away, and we plan to be back by 10:30 in the morning to do dressing change. Matt keeps saying, "I'm gonna sleep 12 hours." Amen, brother. I'm with you. I'm excited about the sleep and relaxation. I'm one of those people who has a REALLY hard time relaxing in my own house if I know there are things that need to be done. I need to get OUT to vacation. But I'm also feeling anxious about leaving and slept horribly last night because of it. I'm not anxious about Jonah's care. I'm anxious about being without him. I'm way more dependent on him than he is on me, I think. Really hoping I'll be able to relax and enjoy it and use the missing him to make the coming back better, not let it ruin our time away. Any prayers for me to chill the heck out are much appreciated. :)
Alright, that's it for me. Bottle time.
Happy (beautiful weather finally!) weekend.
Wednesday, February 17, 2010
mostly a whole lotta nothin'
I got eight and a half hours of sleep last night AND Jonah has slept all night the last three nights. WOOHOO! I was getting worried because the previous two nights had been bad and he had woken up for one to two hours and just screamed. We rocked him back to sleep, but then he'd wake up and cry every time we put him down... So, I was afraid he was deciding he was all done with the all night sleeping. Shwoo. That was a close one.
This not blogging every day is really helping me. I know that might bum some of you out, and I'm really sorry, but I just can't do it everyday if the first time I sit down to do it is 9pm. My energy is zapped by then, and if I'm editing and uploading pictures or video and writing a post it can sometimes take up to two hours. And I'd just rather be sleeping. Another thing is that it is extremely hard to find something to blog about when we've been in the house all day. Really, if I blogged about our day everyday, it would go something like this:
Hi friends. Today we changed diapers, watched Blues Clues, tried some solids, ate a bottle, did bath, did dressing change, ate another bottle, took a nap while being held, played in the floor, played in the exersaucer, watched Gabba and/or Sesame Street, played with our cars, read some books, played in the high chair, tried more solids, ate another bottle, maybe took another nap, played with our ball popper, played with our basketball goal, took meds, popped blisters, aquaphored our face, and went to bed.
Exciting huh?
It's getting tough to come up with blogging material and having to write about how boring it can get around here and how cold and unforgiving the weather has been doesn't make for fun posts, that's for sure. So...
I'll try to continue blogging three or four times a week, but I can't do daily anymore (as I assume you've already figured out). Feel free to pray for two hour naps in the crib, and I'll be glad to go back to daily blogging. :)
Mom and Shaina babysat Jonah last night so Matt and I went to Sagebrush. A while back I signed up with Coupon Mom and got a code for $25 restaurant gift certificates for only $5 (or something like that), and Sagebrush was one of the ones we had a coupon for. You had to spend at least $35 to get $25 off, so needless to say, we ate way too much. It was awesome.
I wanted to show you Jonah's birthday invitation. Heather over at PictureItCards did it for me. She also did his birth announcement and our Christmas card which I've posted on other occasions. I sent some invitations and invited some people through word of mouth, email, or Facebook. I just couldn't afford to send that many people a real invitation. I would love to be able to invite all of you, but it just wasn't possible. Plus, I want to be able to really BE at and in the party. I don't want to feel too stretched. I DO want to meet everybody sometime though (at least you more local folks). We'll have to work that out. :)
So with no further ado, here it is:
This not blogging every day is really helping me. I know that might bum some of you out, and I'm really sorry, but I just can't do it everyday if the first time I sit down to do it is 9pm. My energy is zapped by then, and if I'm editing and uploading pictures or video and writing a post it can sometimes take up to two hours. And I'd just rather be sleeping. Another thing is that it is extremely hard to find something to blog about when we've been in the house all day. Really, if I blogged about our day everyday, it would go something like this:
Hi friends. Today we changed diapers, watched Blues Clues, tried some solids, ate a bottle, did bath, did dressing change, ate another bottle, took a nap while being held, played in the floor, played in the exersaucer, watched Gabba and/or Sesame Street, played with our cars, read some books, played in the high chair, tried more solids, ate another bottle, maybe took another nap, played with our ball popper, played with our basketball goal, took meds, popped blisters, aquaphored our face, and went to bed.
Exciting huh?
It's getting tough to come up with blogging material and having to write about how boring it can get around here and how cold and unforgiving the weather has been doesn't make for fun posts, that's for sure. So...
I'll try to continue blogging three or four times a week, but I can't do daily anymore (as I assume you've already figured out). Feel free to pray for two hour naps in the crib, and I'll be glad to go back to daily blogging. :)
Mom and Shaina babysat Jonah last night so Matt and I went to Sagebrush. A while back I signed up with Coupon Mom and got a code for $25 restaurant gift certificates for only $5 (or something like that), and Sagebrush was one of the ones we had a coupon for. You had to spend at least $35 to get $25 off, so needless to say, we ate way too much. It was awesome.
I wanted to show you Jonah's birthday invitation. Heather over at PictureItCards did it for me. She also did his birth announcement and our Christmas card which I've posted on other occasions. I sent some invitations and invited some people through word of mouth, email, or Facebook. I just couldn't afford to send that many people a real invitation. I would love to be able to invite all of you, but it just wasn't possible. Plus, I want to be able to really BE at and in the party. I don't want to feel too stretched. I DO want to meet everybody sometime though (at least you more local folks). We'll have to work that out. :)
So with no further ado, here it is:
Completely adorable, right?
I do have some cute videos of Jonah I want to try to post soon, but I'm STILL trying to figure out my new camera. It takes great video but is a lot more complicated. There's dubbing and editing and the process of just getting them from memory card to computer is a lot more involved. I'm working on it though. I hope they'll be worth the wait.
Anyway, I feel like his post was a whole lotta nothin' (except for the cute invitation, of course). Sorry about that. Today and tomorrow are supposed to be cold still, but Matt says it's supposed to be in the 50's Friday, Saturday, and Sunday. I think Jonah's ready for swinging at the park (we've never been), so I hope to get to go this weekend.
Hope everybody has a Happy Wednesday.
Tuesday, February 16, 2010
meet caroline!
If you have a chance today, stop by the Auction Blog to meet Caroline, a four-year-old EB friend in Illinois who also has Junctional Epidermolysis Bullosa.
Adrienne, Caroline's mom, has been a huge support and source of encouragement for us during this last year. She's always so positive and hopeful, and that's exactly what we need - HOPE. Caroline has probably been the closest case to Jonah's we've found, and she's doing GREAT!
Caroline makes us optimistic and excited about Jonah's future.
Make sure you stop by and read her story.
We love you, Provost Family!
Adrienne, Caroline's mom, has been a huge support and source of encouragement for us during this last year. She's always so positive and hopeful, and that's exactly what we need - HOPE. Caroline has probably been the closest case to Jonah's we've found, and she's doing GREAT!
Caroline makes us optimistic and excited about Jonah's future.
Make sure you stop by and read her story.
We love you, Provost Family!
Monday, February 15, 2010
jonah's auction and tasty soup
Jonah really loves his new exersaucer. And I love it too because between that, him being able to sit up (with his boppy behind him and a pillow on each side in case he falls) and play by himself a little, and his new chair (that goes up to 40 lbs), I'm getting a little more hands-free time. He has now decided that the only way he'll sleep during the day is if I hold him. Period. He used to take a 28 min nap in the afternoons, but he's over that now. Really, it's okay though. There are much worse things. If I didn't have so much to do, I could sit and rock him for hours. He smells yummy. :)
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I hope you guys are able to keep up with Jonah's EB Auction Fan Page on Facebook. Katie is hosting some fun guessing games and some awesome sneak peeks of many of the auction goodies. She's also putting the sneak peeks on the actual Auction Blog Site, so you can still see them, even if you don't have Facebook.
Believe me, you are not going to want to miss this. I know that sounds very salesmanny of me, but I don't mean it that way. I really do mean there is tons of great stuff that's going to be up for bid, and it's for a good cause. And it's going to be so much fun. And even if you feel like you shouldn't really spend money, there are gas, grocery, and other practical gift cards to places you'd have to spend money anyway. So really, you are paying (less) for stuff you'd have to buy anyway, and your money is going to help cure EB. THAT's what I'm talkin' about.
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Are you ready to love me (and Aunt Kim) forever?
My sister-in-law, Kim, sent me a recipe out of Food Network Magazine. It's called Almost Famous Broccoli-Cheddar Soup. Panera wouldn't give up their Broccoli Cheddar Soup (Have you tried it? It's soooooooooo tasty!) recipe, but their chefs came up with this concoction that they claim is a very close knockoff. I have to admit - I did a little happy dance when I got in the mail.
I have not tried it yet. I'll leave it to those of you who, say, have kids who take naps. Let me know what you think.
Here's the recipe:
6 Tbsp. unsalted butter
1 small onion, chopped
1/4 cup all purpose flour
2 cups half and half
3 cups low-sodium chicken broth
2 bay leaves
1/4 tsp freshly grated nutmeg
Kosher salt and freshly ground pepper
4 7-inch sourdough bread boules
4 cups broccoli florets (about 1 head)
1 large carrot, diced
2 1/2 cups (about 8 oz) grated sharp white and yellow cheddar cheese, plus more for garnish
1. Melt the butter in a large Dutch oven or pot over medium. Add the onion and cook until tender, about 5 min. Whisk in the flour and cook until golden, 3 to 4 min. Then gradually whisk in the half and half until smooth. Add the chicken broth, bay leaves, and nutmeg, then season with salt and pepper and bring to a simmer. Reduce the heat to medium low and cook, uncovered, until thickened, about 20 minutes.
2. Meanwhile, prepare the bread boules, using a sharp knife, cut a circle into the top of each loaf, leaving a one inch border all the way around. Remove the bread top, then hollow out the middle with a fork or your fingers, leaving a thick bread shell.
3. Add the broccoli and carrot to the broth mixture and simmer until tender, about 20 minutes. Discard the bay leaves. Puree the soup in batches in a blender until smooth; you'll still have flecks of carrot and broccoli. Return to the pot. (Or puree the soup in the pot with an immersion blender.)
4. Add the cheese to the soup and whisk over medium heat until melted. Add up to 3/4 cup of water if soup is too thick. Ladle into the bread boules and garnish with cheese.
Seriously, let me know if you try it. I really want to know if it tastes like Panera's. I crave it. It's a sickness, really.
Saturday, February 13, 2010
cute photos and valentine's
Photos from the last few days.
Today
Matt showed me only one page of this I Spy book, and it had a very freaky looking clown on it. So this one will have to be a Daddy and Jonah book because I do NOT. DO. CLOWNS. Jonah will totally dig it though.
On another random note, I am in love with this song from Dan Zanes and Friends Family Dance. It's in Spanish, and it is just GREAT! I love that whole CD actually. (It's mostly English.) Aunt Amy and Uncle Peyton gave it to us for Christmas, and really, it can brighten my whole day, and Jonah loves it too. Every song is just so good. But when this one starts up, Jonah looks straight at me so I'll start singing and dancing. And now, if he's in his exersaucer, he kinda hops up and down to the music too. It's the cutest.
Thursday
Today
Three generations. I often think Jonah looks very much like Matt's dad.
Today was Jonah's first day ever wearing jeans. They have an elastic waist band so I didn't have to worry about zippers or buttons he would catch his hands on. I got them at Crazy 8, which is also where his monkey shirt is from. Aunt Kim got him his monkey shirt for Christmas and then I ordered every other boys' lap shoulder shirt they have the other day. They are getting really hard to find in the big sizes, but they work best for him because the necks are wide and stretch out and don't rub his forehead when we're putting them on or taking them off. These are 12-18 months and just barely fit him. I'm sad that he's outgrowing these. They are just perfect.
Since Granny and Grandaddy were here we let Jonah open his Valentines Day gifts from them and Aunt Kim and Uncle Andrew tonight.
Matt showed me only one page of this I Spy book, and it had a very freaky looking clown on it. So this one will have to be a Daddy and Jonah book because I do NOT. DO. CLOWNS. Jonah will totally dig it though.
Matt's parents kept Jonah last night, and we went out for Valentines. My mom and Shaina kept him earlier in the week and we went to the Wake vs. Boston College game. Twice in one week! WOOT WOOT! Last night we went to dinner at Bone Fish Grill (hooray for gift cards!), killed some time at Barnes and Noble, and then went bowling. We used to bowl in a league when we lived in Greenville and Matt, at least, was decent. I have always sucked. Last night we were both terrible. Bowling is not like riding a bike, apparently. We bowled three games, and my high was a 109. I won't tell you my other two because it was just embarrassing (as if 109 isn't bad enough). We had such a good time both nights though. It was much needed!
Random Thought of the Day: This isn't really random so much as amazing, but we got a little snow last night. That's not amazing... not this winter anyway. Yesterday afternoon, even before the first drop fell, lots of birds were coming to our bird feeder on the back deck to stock up. It was so crazy because I've only ever seen the three same birds (and two very pesky squirrels) at the feeder. It was Jonah's Christmas present from Pop (my dad), and I didn't think many birds had found it yet. But yesterday right before the snow, we had our two regular cardinals and our little finch, but we also had a wren or two, some crazy royal blue bird with a brown chest, and a few others. How do they know??? God is amazing.
On another random note, I am in love with this song from Dan Zanes and Friends Family Dance. It's in Spanish, and it is just GREAT! I love that whole CD actually. (It's mostly English.) Aunt Amy and Uncle Peyton gave it to us for Christmas, and really, it can brighten my whole day, and Jonah loves it too. Every song is just so good. But when this one starts up, Jonah looks straight at me so I'll start singing and dancing. And now, if he's in his exersaucer, he kinda hops up and down to the music too. It's the cutest.
fun sneak peeks on the fan page
Um, so I've sort of been out of the Facebook (and blog and Twitter) loop these last couple days but there's some fun stuff and some great sneak peeks going on over at Jonah's EB Auction Fan Page on Facebook.
You should definitely check it out! I'm getting so excited. I probably should have been better about saving up... self control may be a problem.
Also, this is not a for real blog post but I'll post my random thought from yesterday:
Random Thought of the Day: Stubbing your pinky toe on your left foot really, really hard on your child's new (humongous) exersaucer may be the most excruciating pain in the world. Yes, I've given birth to two children. I stick to my previous statement.
You should definitely check it out! I'm getting so excited. I probably should have been better about saving up... self control may be a problem.
Also, this is not a for real blog post but I'll post my random thought from yesterday:
Random Thought of the Day: Stubbing your pinky toe on your left foot really, really hard on your child's new (humongous) exersaucer may be the most excruciating pain in the world. Yes, I've given birth to two children. I stick to my previous statement.
Thursday, February 11, 2010
random thoughts
I don't really have much to blog about so this will be short. We finally got out today and went to eat lunch with Matt, but other than that (and a doctor's appointment on Monday), we've been in the house all week. The wind yesterday was insane. Tropical Storm force, that is. Matt thinks somebody came over and lowered our basketball goal. I'm pretty sure it was the wind... or else I'm just really unobservant... which, now that I think about it, is quite possible.
Jonah's little boy parts are doing better although he's still got some raw areas and I had to drain another blister there today. He now has a growing blister on his little butt cheek. It's always like that - one place starts getting better and then another one starts. He's a pretty good healer though and so far hasn't scarred a bit (except for his biopsy spot), so we are blessed. I NEVER thought the skin on his knees would be normal. They were so raw and so deep, I was sure he would have scarring there.
I trimmed Jonah's bangs today, with one hand, while he slept in the crook of my opposite elbow. It was very spur of the moment, and I may or may not have done it with the suture scissors that are in my "Blister Basket" that sits on the table by the rocking chair. It was a little impulsive, but that's just how I roll. I tweeted a picture of it (right sidebar), and you can see it here. He wasn't happy. He had just woken up.
I keep having all these random thoughts and have been considering putting a Random Thought of the Day at the bottom of my posts. Do you ever think to yourself, "I wonder if anyone has ever thought that exact same thing before?" Well, I intend to find out.
I've had a ton of them in the last three days but of course can't remember many of them now. All I know is that today in Target, I was thinking things like, "Man, it is so uncomfortable picking out a romantic greeting card when you are surrounded by all the strangers who are also picking theirs out. I can't take this pressure." And, "why is the guy's deodorant on a completely different aisle than the girl's deodorant? Can't we all just get along?" And "Where the Bleep is the contact solution?" You know, that sort of thing.
So...
Random Thought of the Day: Why do people say you should save the best for last when it comes to eating the foods on your plate? I mean, I get that you want to get your green peas out of the way, but if you save your favorite thing for last, you're either too full and don't want it or you do eat it, stuff yourself, and you're completely uncomfortable. A whole lot of anticipation and buildup for nothin'. I live on the edge and take random bites of everything. Matt eats one thing at a time. Oh, you don't care? My bad.
Jonah's little boy parts are doing better although he's still got some raw areas and I had to drain another blister there today. He now has a growing blister on his little butt cheek. It's always like that - one place starts getting better and then another one starts. He's a pretty good healer though and so far hasn't scarred a bit (except for his biopsy spot), so we are blessed. I NEVER thought the skin on his knees would be normal. They were so raw and so deep, I was sure he would have scarring there.
I trimmed Jonah's bangs today, with one hand, while he slept in the crook of my opposite elbow. It was very spur of the moment, and I may or may not have done it with the suture scissors that are in my "Blister Basket" that sits on the table by the rocking chair. It was a little impulsive, but that's just how I roll. I tweeted a picture of it (right sidebar), and you can see it here. He wasn't happy. He had just woken up.
I keep having all these random thoughts and have been considering putting a Random Thought of the Day at the bottom of my posts. Do you ever think to yourself, "I wonder if anyone has ever thought that exact same thing before?" Well, I intend to find out.
I've had a ton of them in the last three days but of course can't remember many of them now. All I know is that today in Target, I was thinking things like, "Man, it is so uncomfortable picking out a romantic greeting card when you are surrounded by all the strangers who are also picking theirs out. I can't take this pressure." And, "why is the guy's deodorant on a completely different aisle than the girl's deodorant? Can't we all just get along?" And "Where the Bleep is the contact solution?" You know, that sort of thing.
So...
Random Thought of the Day: Why do people say you should save the best for last when it comes to eating the foods on your plate? I mean, I get that you want to get your green peas out of the way, but if you save your favorite thing for last, you're either too full and don't want it or you do eat it, stuff yourself, and you're completely uncomfortable. A whole lot of anticipation and buildup for nothin'. I live on the edge and take random bites of everything. Matt eats one thing at a time. Oh, you don't care? My bad.
Tuesday, February 9, 2010
PLEASE help us get the word out
Jonah has been asleep IN HIS BED for over an hour and a half.
Can we all just take a moment?
Ahhhhh, that's better.
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The real purpose of this post is to ask for your help. Jonah's EB Auction is quickly approaching, and we need major help getting the word out. To catch those of you up who may be out of the auction loop, my friend Katie is hosting an online auction (of LOTS of great stuff) in honor of Jonah's upcoming First Birthday to raise money for a DebRA to help fund a cure. Here are the details.
When all of this was just a gleam in her eye, Katie was hoping we would get 20 items for the auction. Well the response has been so amazing (and completely overwhelming... in a good way), we find ourselves with around 100 items up for bid. This is great! And frankly, a little scary. Because without enough people to actually bid on the items, the fundraising fundraiser becomes a little more challenging.
So could you help us?
If you hop on over to the greatness that is Jonah's EB Auction Site, you can see ways you can help spread the word (blogging about it and linking back up to the auction site, adding the auction button to your sidebar, and becoming a fan of the auction group on Facebook) all for a chance to win a Target Gift Card (rude starers not included...).
AND because you love Jonah (and Gabe and Tripp and Leah and Sam and on and on and on...)
AND because you hate EB.
So please stop by the Auction Blog to see how you can help us advertise the auction and get yourself entered to win. And tell your friends and family - bug, harass, be completely relentless... all in the name of Jonah. I give you permission.
I mean, it might even help me get out of my funk.
(Oh man, Patrice, that was a low blow... No you didn't.)
Love you guys so much. Thanks :)
Can we all just take a moment?
Ahhhhh, that's better.
************************************
The real purpose of this post is to ask for your help. Jonah's EB Auction is quickly approaching, and we need major help getting the word out. To catch those of you up who may be out of the auction loop, my friend Katie is hosting an online auction (of LOTS of great stuff) in honor of Jonah's upcoming First Birthday to raise money for a DebRA to help fund a cure. Here are the details.
When all of this was just a gleam in her eye, Katie was hoping we would get 20 items for the auction. Well the response has been so amazing (and completely overwhelming... in a good way), we find ourselves with around 100 items up for bid. This is great! And frankly, a little scary. Because without enough people to actually bid on the items, the fundraising fundraiser becomes a little more challenging.
So could you help us?
If you hop on over to the greatness that is Jonah's EB Auction Site, you can see ways you can help spread the word (blogging about it and linking back up to the auction site, adding the auction button to your sidebar, and becoming a fan of the auction group on Facebook) all for a chance to win a Target Gift Card (rude starers not included...).
AND because you love Jonah (and Gabe and Tripp and Leah and Sam and on and on and on...)
AND because you hate EB.
So please stop by the Auction Blog to see how you can help us advertise the auction and get yourself entered to win. And tell your friends and family - bug, harass, be completely relentless... all in the name of Jonah. I give you permission.
I mean, it might even help me get out of my funk.
(Oh man, Patrice, that was a low blow... No you didn't.)
Love you guys so much. Thanks :)
Monday, February 8, 2010
a little better today
I'm feeling some better today. I went to GriefShare tonight. It was thought provoking, emotional but good. I feel like I've been able to better identify today what's causing some of my funkiness, so I guess that's at least one step in the right direction.
I'm certainly not offended by any of you suggesting antidepressants or anti-anxiety medications, so don't feel bad for emailing about that. I'm definitely not against them, and I'll probably give it a few more days (and some more prayer) and talk to my doctor about it. I at least want to go to the doctor and have them check my thyroid and my Vitamin D levels. I KNOW the spring, being able to get outside, and sunnier weather will help... if it ever arrives.
I guess it boils down to me not feeling like a very good wife or mother right now... mediocre at best. And I just don't want to waste my time with Jonah (or Matt, for that matter) not living up to the fullness and potential God has in store for us.
So whether it's prayer, medicine to give me a jump start, better weather or a combination of all of that to help, I'm open to it.
Life's too short to half-live in funked out bummage.
You know what I'm sayin'?
I'm certainly not offended by any of you suggesting antidepressants or anti-anxiety medications, so don't feel bad for emailing about that. I'm definitely not against them, and I'll probably give it a few more days (and some more prayer) and talk to my doctor about it. I at least want to go to the doctor and have them check my thyroid and my Vitamin D levels. I KNOW the spring, being able to get outside, and sunnier weather will help... if it ever arrives.
I guess it boils down to me not feeling like a very good wife or mother right now... mediocre at best. And I just don't want to waste my time with Jonah (or Matt, for that matter) not living up to the fullness and potential God has in store for us.
So whether it's prayer, medicine to give me a jump start, better weather or a combination of all of that to help, I'm open to it.
Life's too short to half-live in funked out bummage.
You know what I'm sayin'?
Sunday, February 7, 2010
new exersaucer
Here are some photos from the last couple of days.
I went out right before our latest ice/snow storm (Thursday night) and got Jonah a new exersaucer. He's gotten bored with his no toys, simple one, and even if I put toys on the tray, he picks them up and throws them on the floor on purpose. So instead of being able to get some things done, I end up playing pick-up, and it's not so fun for either of us. I actually wanted to get him a walker, but they only had two and I didn't like either one, so this is not only an exersaucer but sort of a walker too. It has one stationary leg, and the other two have wheels, so once he's ready, he can walk it in a circle. I just have to be careful with this one and keep an eye on him. As long as he plays with it gently it seems the hand blisters he gets are minimal. He has had a few more than usual though. Still worth it for him to get to play. He seems to like it pretty well, but in the nature of Jonah, nothing really keeps his attention (except TV) longer than fifteen minutes.
Hangin' out with Dad. This one is from yesterday. Matt's hair was covered in slobber after this. He was somehow surprised by this even though Jonah was actively eating his hair the whole time he was up there.
I went out right before our latest ice/snow storm (Thursday night) and got Jonah a new exersaucer. He's gotten bored with his no toys, simple one, and even if I put toys on the tray, he picks them up and throws them on the floor on purpose. So instead of being able to get some things done, I end up playing pick-up, and it's not so fun for either of us. I actually wanted to get him a walker, but they only had two and I didn't like either one, so this is not only an exersaucer but sort of a walker too. It has one stationary leg, and the other two have wheels, so once he's ready, he can walk it in a circle. I just have to be careful with this one and keep an eye on him. As long as he plays with it gently it seems the hand blisters he gets are minimal. He has had a few more than usual though. Still worth it for him to get to play. He seems to like it pretty well, but in the nature of Jonah, nothing really keeps his attention (except TV) longer than fifteen minutes.
Hangin' out with Dad. This one is from yesterday. Matt's hair was covered in slobber after this. He was somehow surprised by this even though Jonah was actively eating his hair the whole time he was up there.
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Please be in prayer for Baby Andre's family. He had Junctional Herlitz EB and died today. He wasn't even three months old.
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I'd like to say I'm feeling much better and I'm back to my normal self, but I'd be lying. I just can't seem to snap out of whatever this is. I feel like my energy and strength have been completely zapped. I've run out. I don't know why, after 11 1/2 months, all of this feels so heavy. It's weird because, besides his little boy part issues (still going on) and refusal to eat solids, things aren't really any different than they've ever been.
I keep praying that I'll stop feeling sorry for myself and snap out of it. I know Meg and Courtney and all the SMA moms and about a million other moms to special needs kids have it way harder than I do. In the scheme of things, we are super blessed and things are so much better than they could be. My head knows that. My heart is harder to convince. I get so mad at myself because I know that I have so much more help and support than most people. I'm completely surrounded and could call on about 20 different people at any given time, and they would be here. But somehow I still feel isolated and like nobody really gets it.
It's so frustrating.
On another note, a couple of you asked how I would want someone to ask/approach me about Jonah. I can't speak for any other moms, but I know I LOVE for someone to look at Jonah and smile (either at me or at him). And I like it when they say that he's cute or comment on his eyes because it lets me know that even if they are noticing the blisters (which of course they are), they can see beyond them.
As far as what you should say (should you feel the need to ask), don't ever say, "What's wrong with your baby?" Obviously something is "wrong" but we don't need it put that way. If other special needs moms feel like I do, the last thing we want is for someone to remind us that there is something "wrong" with our kids. We feel isolated enough as it is. I've gotten asked if he got burnt or has the chicken pox. I guess that's fine, but as far as asking a "what's wrong" or "what happened" sort of question, I don't really know what a nice way of bringing it up would be. I'm not really one of those people who would approach a stranger about their child's disability (not saying there is anything wrong with that) so I don't know how I would ask.
Honestly I think I would just rather be left alone most of the time (or maybe that's just because of this funk I'm in.) I think when I get out I just want to get to pretend for ten minutes that everything's okay and "normal". I mean I guess if you were asking for the right reasons God would give you the right words. I certainly haven't been offended every time it's ever come up... I just can't remember right off hand how it was brought up those times. I think compassion and loving concern are always conveyed with a smile and body language even more than what you actually say.
I love the idea of the cards to hand out with our blog address and a little info about EB. It's just not something I have time for right now. I do want to educate. I hope it doesn't seem like I don't. I think awareness is huge. But really, I'm just not in a place right now where I can be some huge advocate to complete strangers when all I want to do is run errands and enjoy being out the one or two times a week I actually get out. All I want is a break from EB. And having people point, stare, and ask uncomfortable questions while we're out (trying to get that break) is sometimes just exhausting. I can't really explain it. I'm sure it will get better with time, but right now I'm just in a "I really, really hate EB, and I think its initials should really be B.S., and all I want is for Jonah to be "normal," and I want Gabe back, and I want what every wife/mom dreams of: healthy kids" sort of mood.
I know God has a plan. I know He won't take me anywhere He can't get me through. I know He is with me. I know (believe me, I know) that Jonah is a huge blessing. I know that God is using Jonah, and that Jonah's story is daily bringing people closer to God and his testimony will bring God glory.
I get it.
But I don't always have to like it.
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