I just found out that Leah passed away this morning.
Her heart stopped and they tried to revive her unsuccessfully. Nobody really knows why or whether or not it was related to yesterday's g-tube/teeth removal surgeries.
We are all so heartbroken. Please pray for Leah's entire family, especially her parents, Jeff and Meg.
I don't know what else to say.
Thursday, December 31, 2009
Wednesday, December 30, 2009
bummage begone
A few months ago, Jonah's Child Developmental Services Case Manager asked me if Jonah reacts differently to children than to adults. It was just one of those standard development questions. Anyway, I had to say I didn't know because he is rarely around kids. His close-by cousins have been sick a lot these last few months (colds and the like), and he doesn't do daycare or the nursery at church because of germs. Anyway, I told her no.
But Ms. B, just to answer your question - "Uh, yeah, just a little."
Please enjoy this two and a half minutes of Jonah thinking his cousins are absolutely hilarious.
I'm a little late tonight (Christmas with Matt's family), but I hope you have read Leah's blog by now. Everything went really well today. The g-tube was placed without incident, and she had eight teeth removed. And thanks to all those prayers, there is no damage to her mouth or face. Praise God!
Please continue to pray for the rest of Leah's hospital stay and that she will remain infection free. They hope to go home on Saturday. Also, please be in prayer for Tripp tomorrow as he's also getting his teeth removed.
Thank you so much for your prayers. I know Meg, Courtney, and I all appreciate them very much.
Tuesday, December 29, 2009
prayer requests
UPDATE: Leah is in recovery and did well during surgery. I'll update more when I know. That's all I've got right now.
I've had a lot weighing on my heart lately, but didn't want to share until after Christmas as to keep the bummage to a minimum.
We've had two losses (that I know of) in the EB Community this month. One was a three month old baby with Junctional EB and the other was a six and a half year old little boy with Junctional EB. Baby L got a g-tube, developed an infection, and passed away in early December. The little boy, W, had been fighting severe Junctional EB for six years, and finally, his body just couldn't take it anymore. He died in his sleep on Christmas Eve. I can't tell you the sadness I've felt for their families, especially their mothers, whom I don't even know. And of course, I've had a certain amount of sadness over thoughts of losing Jonah. Maybe it's crazy to think of his death when he's doing so well. I don't know. I know I should focus on the positive, and I do most of the time, but sometimes this stuff - this cruel reality that is Junctional EB - just slaps you in the face. To think that he could be doing well now, but that we could lose him at six years old. I can't handle it. And I think about it. A lot. I just can't help it. And I cry and obsess and cry some more. And then I'm okay. And then I'm not. We were told that non-Herlitz could have a normal life span (with MANY difficulties and complications), but I think I only KNOW of two Junctional EB adults. To me, that just doesn't add up. Anyway, I was doing really well with all of it and then we lost L and W, and I'm in a low now... really struggling with focusing on the now rather than worrying about the what if.
And I guess the real reason I'm posting tonight is to ask for prayers for Leah and Tripp.
Leah (already with a trach) will be getting a g-tube and her teeth taken out tomorrow.
Tripp (already with a trach and g-tube) will be getting his teeth (ten in all I think) taken out on Thursday.
I hate what Courtney and Meg are having to go through. It is not fair that two such young, beautiful mothers have to deal with this. They are having to have their babies' teeth REMOVED because their teeth are tearing their mouths to pieces. That is so incredibly messed up. And please pray for Leah as she gets her g-tube. Thankfully she will not have to be intubated since she already has the trach, but please pray that she will resist infection while in the hospital.
Thank you for keeping all of our sweeties in your prayers. And if you are making any end of the year donations, please consider DebRA or the Epidermolysis Bullosa Medical Research Foundation. We are desperate for a cure! Please help if you can.
I've had a lot weighing on my heart lately, but didn't want to share until after Christmas as to keep the bummage to a minimum.
We've had two losses (that I know of) in the EB Community this month. One was a three month old baby with Junctional EB and the other was a six and a half year old little boy with Junctional EB. Baby L got a g-tube, developed an infection, and passed away in early December. The little boy, W, had been fighting severe Junctional EB for six years, and finally, his body just couldn't take it anymore. He died in his sleep on Christmas Eve. I can't tell you the sadness I've felt for their families, especially their mothers, whom I don't even know. And of course, I've had a certain amount of sadness over thoughts of losing Jonah. Maybe it's crazy to think of his death when he's doing so well. I don't know. I know I should focus on the positive, and I do most of the time, but sometimes this stuff - this cruel reality that is Junctional EB - just slaps you in the face. To think that he could be doing well now, but that we could lose him at six years old. I can't handle it. And I think about it. A lot. I just can't help it. And I cry and obsess and cry some more. And then I'm okay. And then I'm not. We were told that non-Herlitz could have a normal life span (with MANY difficulties and complications), but I think I only KNOW of two Junctional EB adults. To me, that just doesn't add up. Anyway, I was doing really well with all of it and then we lost L and W, and I'm in a low now... really struggling with focusing on the now rather than worrying about the what if.
And I guess the real reason I'm posting tonight is to ask for prayers for Leah and Tripp.
Leah (already with a trach) will be getting a g-tube and her teeth taken out tomorrow.
Tripp (already with a trach and g-tube) will be getting his teeth (ten in all I think) taken out on Thursday.
I hate what Courtney and Meg are having to go through. It is not fair that two such young, beautiful mothers have to deal with this. They are having to have their babies' teeth REMOVED because their teeth are tearing their mouths to pieces. That is so incredibly messed up. And please pray for Leah as she gets her g-tube. Thankfully she will not have to be intubated since she already has the trach, but please pray that she will resist infection while in the hospital.
Thank you for keeping all of our sweeties in your prayers. And if you are making any end of the year donations, please consider DebRA or the Epidermolysis Bullosa Medical Research Foundation. We are desperate for a cure! Please help if you can.
Sunday, December 27, 2009
ten months today
Hello World!
Today is my ten month birthday. Can you believe that?
Yeah, neither can Mommy. She says she can't believe how grown up I'm looking all of a sudden. I'm struggling a little more with my weight gain lately (stupid gushers!), but I'm sure not scrawny. I currently weigh 19 lb 11 oz, and we think I'm in the thirty something percentile. But that was a while ago, and Mommy says I've probably dropped a little bit. I'm on just Soy formula now, and we're just now starting to try solids again. Mom says I'm doing much better than I was a few months ago. Sometimes I'll eat about a half a container of baby food in one sitting. THAT is a very big deal for me. My hair is getting so long that I almost need a haircut. It's really thick on top, but because I blistered so badly on the back of my head when I was a little baby, it's not growing as much back there. Mom wants it to be a little long so it will grow over my bald spots. I don't mind having bald spots though. It's just like my Grandaddy's.
I'm making all sorts of sounds ALL the time including ma, na, ba, da, ga, heh, and sometimes la. I also like to make a gargling sound and still enjoy a good scream every now and again. Da is probably my favorite sound, although I'm not associating it with my Daddy yet. I say Da when I'm really happy, and I only say Ma when I'm really ticked off. Go figure, Mom says. I babble like a crazy person. Mom thinks when I do start talking, I'll go a mile a minute.
I still have only two teeth on the bottom and one coming in on the top. Mom's glad I'm slow on the getting teeth front, because teeth, for me, cause blisters, so the fewer the better at this point. I'm liking tummy time a little better, but I still don't push up on my hands very much.
My favorite songs lately have been O Holy Night, Away in a Manger, the Chris Tomlin version of Amazing Grace, Skidda Marinky Dinky Dink, and the funky version of Jesus Loves Me (think Queen's We Will Rock You).
This past month I've learned how to ride in a shopping cart, and today I sat in a high chair for the very first time. See?
In a cart and a high chair I still have to have some rolled up blankets to help support me, but Mommy says I'm making very good progress.
In just the last week, I've FINALLY started putting weight on my feet and standing up. Mommy and Daddy still have to help me a lot, but I can pretty much support my weight on my feet as long as they hold onto me around my torso. Mommy was so excited the first time I did that she about peed her pants. Silly Mommy. She says I'm well on my way. I don't know what she means by that, but it seems to make her really happy, so maybe I'll keep doing it.
I'm loved by lots and lots of people. Today I got to meet my Pop at a restaurant for a third Christmas celebration (still two more to go). He's so silly and makes lots of funny faces.
He gave me this cool bird feeder, and Mom says it will be really neat in the Spring when all the birds come back. She says that we can hang it on the back deck, so I can see them out the window.
I'm liking all of this present stuff A LOT.
I'm definitely more into the bows and paper than the actual gift, but I'm learning that the toys do really cool things too. My favorites so far seem to be my WonderPets Fly Boat and my Ball Popper that Santa brought me.
It's been crazy around here these last couple days, so Mom hasn't been able to show me what all my toys do yet. She says I'm going to love them all. My Aunt Sarah got me a little sit-up size basketball hoop that cheers when I make a basket, so Dad likes to help me play with that. He can't wait til I can shoot real hoops in the driveway, so this is good practice. Little does he know I'm going to take him to school in basketball. I'm the next Steve Nash. What? You didn't know I am 1/8th Canadian, eh?
Tonight Granny and Grandaddy came, and they are going to be here ALL WEEK. It's too good to be true!
My Aunt Kim, Uncle Andrew, and my cousins are coming on Tuesday night, but they can't stay here. Uncle Andrew is allergic to cats. Mommy says that's probably a good thing that they're not staying here because she'd hate to have to make someone (or several someones) sleep in the closet.
Mom says she just can't believe I'll be turning a year old in just two months. She's so glad I'm getting older, bigger, and stronger. For the most part, things are getting some easier. But I think it makes her a little sad that I'm less and less baby every day. Don't tell anyone, but sometimes when she's rocking me, and it's just me and her, she cries a little bit thinking about the days I won't need her to rock me anymore. She loves me a lot, I think. Daddy does too, and he's just the most fun. Now that I can support my weight a lot better, Daddy does his curls with me (literally, WITH me) and can wrestle me a little bit. Mom does a lot of Ride A Little Horsey (although she does a Spanish version) and flies me around the room. We all like that they can be more physical with me, and because of all my protective bandages, it doesn't hurt me one bit. Thank you, Jesus. Mommy thinks back a lot to those first days after I was born when she didn't even know if she'd be able to touch me. But I get hugs, snuggles, kisses, and wrestling moves just as much as the next guy, and I love every minute of it. We've all come a long way.
Mom and Dad say they are so blessed to have me, and they don't take one single moment for granted. Although some days are (much) harder than others, they love me every second of every minute of every day and thank God that He thought enough of them to make them my parents. What an honor! They wouldn't have it any other way.
Now that the holidays are almost over (did I mention I get two more Christmases?), Mom says she has to start planningmy first birthday party the blow out of the century. Shwoo. She's going to have to find some place a lot bigger than our house to have it. She says all that love can't fit into our little house. What a great problem to have!
Today is my ten month birthday. Can you believe that?
Yeah, neither can Mommy. She says she can't believe how grown up I'm looking all of a sudden. I'm struggling a little more with my weight gain lately (stupid gushers!), but I'm sure not scrawny. I currently weigh 19 lb 11 oz, and we think I'm in the thirty something percentile. But that was a while ago, and Mommy says I've probably dropped a little bit. I'm on just Soy formula now, and we're just now starting to try solids again. Mom says I'm doing much better than I was a few months ago. Sometimes I'll eat about a half a container of baby food in one sitting. THAT is a very big deal for me. My hair is getting so long that I almost need a haircut. It's really thick on top, but because I blistered so badly on the back of my head when I was a little baby, it's not growing as much back there. Mom wants it to be a little long so it will grow over my bald spots. I don't mind having bald spots though. It's just like my Grandaddy's.
I'm making all sorts of sounds ALL the time including ma, na, ba, da, ga, heh, and sometimes la. I also like to make a gargling sound and still enjoy a good scream every now and again. Da is probably my favorite sound, although I'm not associating it with my Daddy yet. I say Da when I'm really happy, and I only say Ma when I'm really ticked off. Go figure, Mom says. I babble like a crazy person. Mom thinks when I do start talking, I'll go a mile a minute.
I still have only two teeth on the bottom and one coming in on the top. Mom's glad I'm slow on the getting teeth front, because teeth, for me, cause blisters, so the fewer the better at this point. I'm liking tummy time a little better, but I still don't push up on my hands very much.
My favorite songs lately have been O Holy Night, Away in a Manger, the Chris Tomlin version of Amazing Grace, Skidda Marinky Dinky Dink, and the funky version of Jesus Loves Me (think Queen's We Will Rock You).
This past month I've learned how to ride in a shopping cart, and today I sat in a high chair for the very first time. See?
In a cart and a high chair I still have to have some rolled up blankets to help support me, but Mommy says I'm making very good progress.
In just the last week, I've FINALLY started putting weight on my feet and standing up. Mommy and Daddy still have to help me a lot, but I can pretty much support my weight on my feet as long as they hold onto me around my torso. Mommy was so excited the first time I did that she about peed her pants. Silly Mommy. She says I'm well on my way. I don't know what she means by that, but it seems to make her really happy, so maybe I'll keep doing it.
I'm loved by lots and lots of people. Today I got to meet my Pop at a restaurant for a third Christmas celebration (still two more to go). He's so silly and makes lots of funny faces.
He gave me this cool bird feeder, and Mom says it will be really neat in the Spring when all the birds come back. She says that we can hang it on the back deck, so I can see them out the window.
I'm liking all of this present stuff A LOT.
I'm definitely more into the bows and paper than the actual gift, but I'm learning that the toys do really cool things too. My favorites so far seem to be my WonderPets Fly Boat and my Ball Popper that Santa brought me.
It's been crazy around here these last couple days, so Mom hasn't been able to show me what all my toys do yet. She says I'm going to love them all. My Aunt Sarah got me a little sit-up size basketball hoop that cheers when I make a basket, so Dad likes to help me play with that. He can't wait til I can shoot real hoops in the driveway, so this is good practice. Little does he know I'm going to take him to school in basketball. I'm the next Steve Nash. What? You didn't know I am 1/8th Canadian, eh?
Tonight Granny and Grandaddy came, and they are going to be here ALL WEEK. It's too good to be true!
My Aunt Kim, Uncle Andrew, and my cousins are coming on Tuesday night, but they can't stay here. Uncle Andrew is allergic to cats. Mommy says that's probably a good thing that they're not staying here because she'd hate to have to make someone (or several someones) sleep in the closet.
Mom says she just can't believe I'll be turning a year old in just two months. She's so glad I'm getting older, bigger, and stronger. For the most part, things are getting some easier. But I think it makes her a little sad that I'm less and less baby every day. Don't tell anyone, but sometimes when she's rocking me, and it's just me and her, she cries a little bit thinking about the days I won't need her to rock me anymore. She loves me a lot, I think. Daddy does too, and he's just the most fun. Now that I can support my weight a lot better, Daddy does his curls with me (literally, WITH me) and can wrestle me a little bit. Mom does a lot of Ride A Little Horsey (although she does a Spanish version) and flies me around the room. We all like that they can be more physical with me, and because of all my protective bandages, it doesn't hurt me one bit. Thank you, Jesus. Mommy thinks back a lot to those first days after I was born when she didn't even know if she'd be able to touch me. But I get hugs, snuggles, kisses, and wrestling moves just as much as the next guy, and I love every minute of it. We've all come a long way.
Mom and Dad say they are so blessed to have me, and they don't take one single moment for granted. Although some days are (much) harder than others, they love me every second of every minute of every day and thank God that He thought enough of them to make them my parents. What an honor! They wouldn't have it any other way.
Now that the holidays are almost over (did I mention I get two more Christmases?), Mom says she has to start planning
prayer request for leah
Our EB friend, Leah, is in the hospital. She stopped eating on Christmas day, and it appears as though she will be getting a g-tube very soon. Please be in prayer for her (and her family), as any procedure is complicated for an EB baby. Thankfully, she will not have to be intubated, since she already has a trach, but there is still danger for infection and complication.
You can follow Leah's blog here. She is just a few weeks older than Jonah and also has Junctional EB.
You can follow Leah's blog here. She is just a few weeks older than Jonah and also has Junctional EB.
Saturday, December 26, 2009
photos from the last couple days
At Gabe's Spot
Christmas Eve at Mom's
Christmas Morning
Playing Video Games with Dad
Checking Out Trent's Beard
Friday, December 25, 2009
Merry Christmas
Thank you so much for the love and support you've shown us this past year.
Hope you all have a very Merry Christmas!
Wednesday, December 23, 2009
merry christmas adam
We haven't done a whole lot today. We got dressing change out of the way first thing and then Jonah and I just kind of hung out until this afternoon. We had to go pick up our grocery order at 2:30. I know I've said that before but online grocery shopping is the bomb diggidy. I can pick out everything in about half the time, always know I'm getting the best price because you can sort by lowest unit price, and save money because I don't impulse shop. The $4.95 is totally worth it. My understanding is that you can use coupons, but I'm not sure how that works. I don't know if you have to let them know ahead of time so they wait and ring up your order or if they credit money to your next purchase. Either way, it's good stuff.
When we got home, there were flowers for me waiting on the front porch. Guess who they were from? Matt's dad! So sweet. And because they have real garland or something in them, the house smells like a Christmas tree now. Our tree is artificial, so I'm very glad to have the real smell.
Jonah did NOT sleep all night last night... not even close, actually. But we hope that last night was the fluke and not the two nights before. He refused to eat overnight though, so I'm hoping that's a good sign. More interest in sleeping than eating at night is the first step, I'd say. Guess what? Thirty-one point eight ounces today with no gushers. I'm so thankful that he's eating better. And now that I have groceries (finally), we're getting started on the solids for real. I'm going to be really relaxed about it though. He can eat how much he wants, and as soon as he starts acting disinterested, we're all done. I'm not pushing it until we HAVE to push it.
Okay, I'm not sure when I'll post again, but I'll try to get some photos up when I can. Tomorrow is our first Christmas at my Mom's house. Ham and Lima beans, here I come.
Merry Christmas Adam! (Get it? Because he came first. Get it? That one is compliments of Matt's Dad too. You're welcome.)
When we got home, there were flowers for me waiting on the front porch. Guess who they were from? Matt's dad! So sweet. And because they have real garland or something in them, the house smells like a Christmas tree now. Our tree is artificial, so I'm very glad to have the real smell.
Jonah did NOT sleep all night last night... not even close, actually. But we hope that last night was the fluke and not the two nights before. He refused to eat overnight though, so I'm hoping that's a good sign. More interest in sleeping than eating at night is the first step, I'd say. Guess what? Thirty-one point eight ounces today with no gushers. I'm so thankful that he's eating better. And now that I have groceries (finally), we're getting started on the solids for real. I'm going to be really relaxed about it though. He can eat how much he wants, and as soon as he starts acting disinterested, we're all done. I'm not pushing it until we HAVE to push it.
Okay, I'm not sure when I'll post again, but I'll try to get some photos up when I can. Tomorrow is our first Christmas at my Mom's house. Ham and Lima beans, here I come.
Merry Christmas Adam! (Get it? Because he came first. Get it? That one is compliments of Matt's Dad too. You're welcome.)
Tuesday, December 22, 2009
tissue paper
Hey everybody.
It's me, Jonah. Guess what? I slept all night again last night. That's two nights in a row. Mommy and Daddy can't believe it when they wake up in the morning and realize that it's the alarm clock waking them up. Now if Mommy could just get in bed before 11:30.
Today was a pretty good day, but I was a little more fussy than usual. Probably teething, Mom thinks. I ate 29 ounces today, but I gushed up about four or five of that. Mom tried six ounces of the soy mixed with just two ounces of the Peptamen Jr. for my first bottle of the day, and apparently I can't handle that either. So it's either a whey protein allergy or lactose intolerance or both. Sigh. Anyway, Mom's not trying the Peptamen again unless I stop eating the soy. But I'm really eating great these last couple of days.
We went to Target today (again). Mommy had some things to return and a few things to pick up. When we got there, before Mom got me out of my car seat, I spit up all down my shirt and pants. Mommy gave up, buckled me back up, and we left. But then she put on her big girl panties, gave her self a pep talk, went through the Chick-fil-A drive-thru for a pick-me-up sweet tea, and we went back. She said something about it being society that says your kid's not supposed to go around covered in vomit and smelling funky. "We're not letting the man get us down," she said. I don't really know what any of that means, but back to Target we went. So just to show Mommy how proud I was of her, I puked all down myself again while we were standing at the return counter. Sorry, Mom.
And tonight Mimi and Papa (Daddy's Aunt Patsy and Uncle Bill) came over to give me my Christmas present.
Guess what they got me???
TISSUE PAPER!
I LOVE me some tissue paper.
Mommy says that somebody named Santa Claus is coming in a few days and will bring more tissue paper. We're celebrating about four or five different Christmases this year with different parts of the family. Mom says she better cut down on her photos per gift ratio or it's going to be out of control. She took 14 photos of me opening this one present. She's so silly.
It's me, Jonah. Guess what? I slept all night again last night. That's two nights in a row. Mommy and Daddy can't believe it when they wake up in the morning and realize that it's the alarm clock waking them up. Now if Mommy could just get in bed before 11:30.
Today was a pretty good day, but I was a little more fussy than usual. Probably teething, Mom thinks. I ate 29 ounces today, but I gushed up about four or five of that. Mom tried six ounces of the soy mixed with just two ounces of the Peptamen Jr. for my first bottle of the day, and apparently I can't handle that either. So it's either a whey protein allergy or lactose intolerance or both. Sigh. Anyway, Mom's not trying the Peptamen again unless I stop eating the soy. But I'm really eating great these last couple of days.
We went to Target today (again). Mommy had some things to return and a few things to pick up. When we got there, before Mom got me out of my car seat, I spit up all down my shirt and pants. Mommy gave up, buckled me back up, and we left. But then she put on her big girl panties, gave her self a pep talk, went through the Chick-fil-A drive-thru for a pick-me-up sweet tea, and we went back. She said something about it being society that says your kid's not supposed to go around covered in vomit and smelling funky. "We're not letting the man get us down," she said. I don't really know what any of that means, but back to Target we went. So just to show Mommy how proud I was of her, I puked all down myself again while we were standing at the return counter. Sorry, Mom.
And tonight Mimi and Papa (Daddy's Aunt Patsy and Uncle Bill) came over to give me my Christmas present.
Guess what they got me???
TISSUE PAPER!
I LOVE me some tissue paper.
Oh yeah, and it came with a cool, squishy, sock dog.
HOORAY!
Mommy says that somebody named Santa Claus is coming in a few days and will bring more tissue paper. We're celebrating about four or five different Christmases this year with different parts of the family. Mom says she better cut down on her photos per gift ratio or it's going to be out of control. She took 14 photos of me opening this one present. She's so silly.
Anyway, that's it for me for now. I'll catch you guys on the 27th.
MERRY CHRISTMAS!
Love,
Jonah
Jonah
Monday, December 21, 2009
snow days
A few pics from our snow days.
Hanging out with Dad on the bed.
Hanging out on the coffee table. (Don't freak out, Granny. Matt was standing just outside the frame ready to catch him if he started to roll.)
Hanging out with Dad on the bed.
Hanging out on the coffee table. (Don't freak out, Granny. Matt was standing just outside the frame ready to catch him if he started to roll.)
This is all we got of the snow. I actually forgot we were supposed to be getting snow photos, and zoomed in too much. When your child can't quite sit up on his own (and certainly not in the snow), snow photos aren't so fun. Jonah was NOT feeling it.
****************************
Jonah slept ALL NIGHT last night (9 pm to 7 am) and did not even make a peep. And guess what else? He STILL ate 29 ounces today.
It's a Christmas Miracle!!!
Sunday, December 20, 2009
our weekend (without pictures)
We've had an alright weekend. Jonah did a lot of spitting up and had one gusher yesterday, but he ate 26 ounces overall.
My mom watched Jonah for several hours and Matt and I were able to go out yesterday afternoon. We saw The Blind Side and then went to eat at Ham's. We were going to go out on Friday night but decided to wait until Saturday afternoon because of the snow.
Kathryn and Sarah are going to watch him tonight, and we are going to the Wake vs. NC State basketball game. Matt's dad got us season tickets as an early Christmas present, but we haven't been able to get to many because of needing to get Jonah in bed. I'm trying hard to release some control and let other people watch him more. It's not that I don't trust other people. It's just that I know how challenging feeding him is, and I don't really want other people to have to deal with that. But they assure me they don't mind, so I'm trying to let go. And when he's gushing like he was, me not being here is just not an option. Hopefully no gushers tonight. It went well with Mom yesterday. He saved his gusher just for me. :)
This was my status last night: Just took a long bath. Now I smell like pretty flowers... much better than the baby vomit I've been covered in all day. MUCH better. Yep, that's right, friends... a very vomitous day. He may or may not have puked in my face, in my hair, and down my neck. I couldn't rightly say. Generally, he's doing better on the Soy and eating more of it, but we're getting some Peptamen Jr into the pharmacy that his Pediatrician wants us to try. It is a whey based formula, but has no lactose. I don't know if I'll try it right away or just stay on the Soy for now since he seems to be doing better. I may do half and half and see how that goes. I haven't decided yet. The Peptamen does come in vanilla so that may make him like it better. He sure did like the bottles with Pediasure better.
I gotta run. We need to set up for tomorrow's dressing change and get some other chores done before we leave. Oh... I did try some Dora yogurt this morning and gave him a few bites of the soft part of my Crescent Roll, and he definitely seemed more interested than he was two months ago. I really need to go to the grocery store. We have plenty of pureed baby food in a jar, but not much on the side of soft, solid big people foods he could eat. Ugh... so much to do so little time. Channeling my inward Scarlett O'Hara... I can't think about that today. I'll think about it tomorrow. After all, tomorrow is another day.
My mom watched Jonah for several hours and Matt and I were able to go out yesterday afternoon. We saw The Blind Side and then went to eat at Ham's. We were going to go out on Friday night but decided to wait until Saturday afternoon because of the snow.
Kathryn and Sarah are going to watch him tonight, and we are going to the Wake vs. NC State basketball game. Matt's dad got us season tickets as an early Christmas present, but we haven't been able to get to many because of needing to get Jonah in bed. I'm trying hard to release some control and let other people watch him more. It's not that I don't trust other people. It's just that I know how challenging feeding him is, and I don't really want other people to have to deal with that. But they assure me they don't mind, so I'm trying to let go. And when he's gushing like he was, me not being here is just not an option. Hopefully no gushers tonight. It went well with Mom yesterday. He saved his gusher just for me. :)
This was my status last night: Just took a long bath. Now I smell like pretty flowers... much better than the baby vomit I've been covered in all day. MUCH better. Yep, that's right, friends... a very vomitous day. He may or may not have puked in my face, in my hair, and down my neck. I couldn't rightly say. Generally, he's doing better on the Soy and eating more of it, but we're getting some Peptamen Jr into the pharmacy that his Pediatrician wants us to try. It is a whey based formula, but has no lactose. I don't know if I'll try it right away or just stay on the Soy for now since he seems to be doing better. I may do half and half and see how that goes. I haven't decided yet. The Peptamen does come in vanilla so that may make him like it better. He sure did like the bottles with Pediasure better.
I gotta run. We need to set up for tomorrow's dressing change and get some other chores done before we leave. Oh... I did try some Dora yogurt this morning and gave him a few bites of the soft part of my Crescent Roll, and he definitely seemed more interested than he was two months ago. I really need to go to the grocery store. We have plenty of pureed baby food in a jar, but not much on the side of soft, solid big people foods he could eat. Ugh... so much to do so little time. Channeling my inward Scarlett O'Hara... I can't think about that today. I'll think about it tomorrow. After all, tomorrow is another day.
Friday, December 18, 2009
a couple of great days
First of all, because I know you're dying to know, things are moving again here at our house Although I don't want to do it often, the one time we had to use the Karo Syrup, it worked. Hooray!
We've had a great couple of days, although we did have a seven ounce weight loss from last week to yesterday. That's the most ever, but I'm trying not to freak out about it. I knew it would be bad considering the amount Jonah has gushed up this week and his dislike of his new formula. Here he is hanging out on the scale. He was having a blast. You couldn't have told him anything was wrong. This was mid-arm flap. 19 lbs. 7 oz. (We subtract a pound for shirt, diaper, and bandages.)
He's only taken 21 or 22 ounces the last couple days, but today he took 27! And that's only taking one ounce overnight. He wasn't happy about taking that one ounce either. He seems to be wanting to phase out the night feeding. That's fine with me, but if he's going to do that, I also want him to phase out the night awakening. Hopefully we are back on the way up! I plan on trying solids again tomorrow after a two month hiatus. I would appreciate any prayers you want to toss up for that. As we approach a year, I feel more and more pressure for him to eat solids and like it. I'm sure he'll be on some form of formula or liquid nutrition well past a year old, but at some point, oral liquid feedings just won't be enough anymore.
So why has it been a great last couple of days? Yesterday was Matt's birthday (we're exactly seven days apart, born in the same hospital), and Jonah cooperated and let us go visit him at work. We left the house at 11:30, visited the office for a bit, and then I went in a vacant, dark office, got him to sleep and fed him. Although it was a struggle to get him asleep and started, he did eat over five ounces, so I felt pretty good about that. Anyway, long story short he stayed asleep during the transition from office to outside in the cold to car seat, slept while we drove to the restaurant, woke up when we put him in the stroller, and hung out in the stroller AS HAPPY AS CAN BE for over an hour while we got to have leisurely birthday lunch with Daddy and his office mates at O'Charleys (a SIT DOWN restaurant... very big deal).
Then he went to bed last night around 8:30 and did not wake up until just a little after midnight. That is awesome considering he's been waking up four to five times between 8:30 and midnight here lately. Matt and I were able to sit down, RELAX, and watch a movie. He was only up for about twenty minutes and then slept straight through until 7 am. I'd say Baby J gave his Dad some pretty good birthday gifts. And then he ate 27 ounces today! Woohoo!
Today we were able to get dressing change out of the way first thing (Thanks, Aimee!), and we got to make a trip to Target. When we came out, it was snowing. Jonah wasn't a huge fan of the wet stuff flying in his face, and being the good mother I am,I made him sit out in it for a few minutes long enough for me to get out my phone and take a five second video of his first time in the snow while he whined at the injustice of it all I immediately took him out of the stroller and quickly got him hooked into his car seat in the toasty warm car.
We've had a great couple of days, although we did have a seven ounce weight loss from last week to yesterday. That's the most ever, but I'm trying not to freak out about it. I knew it would be bad considering the amount Jonah has gushed up this week and his dislike of his new formula. Here he is hanging out on the scale. He was having a blast. You couldn't have told him anything was wrong. This was mid-arm flap. 19 lbs. 7 oz. (We subtract a pound for shirt, diaper, and bandages.)
He's only taken 21 or 22 ounces the last couple days, but today he took 27! And that's only taking one ounce overnight. He wasn't happy about taking that one ounce either. He seems to be wanting to phase out the night feeding. That's fine with me, but if he's going to do that, I also want him to phase out the night awakening. Hopefully we are back on the way up! I plan on trying solids again tomorrow after a two month hiatus. I would appreciate any prayers you want to toss up for that. As we approach a year, I feel more and more pressure for him to eat solids and like it. I'm sure he'll be on some form of formula or liquid nutrition well past a year old, but at some point, oral liquid feedings just won't be enough anymore.
So why has it been a great last couple of days? Yesterday was Matt's birthday (we're exactly seven days apart, born in the same hospital), and Jonah cooperated and let us go visit him at work. We left the house at 11:30, visited the office for a bit, and then I went in a vacant, dark office, got him to sleep and fed him. Although it was a struggle to get him asleep and started, he did eat over five ounces, so I felt pretty good about that. Anyway, long story short he stayed asleep during the transition from office to outside in the cold to car seat, slept while we drove to the restaurant, woke up when we put him in the stroller, and hung out in the stroller AS HAPPY AS CAN BE for over an hour while we got to have leisurely birthday lunch with Daddy and his office mates at O'Charleys (a SIT DOWN restaurant... very big deal).
Then he went to bed last night around 8:30 and did not wake up until just a little after midnight. That is awesome considering he's been waking up four to five times between 8:30 and midnight here lately. Matt and I were able to sit down, RELAX, and watch a movie. He was only up for about twenty minutes and then slept straight through until 7 am. I'd say Baby J gave his Dad some pretty good birthday gifts. And then he ate 27 ounces today! Woohoo!
Today we were able to get dressing change out of the way first thing (Thanks, Aimee!), and we got to make a trip to Target. When we came out, it was snowing. Jonah wasn't a huge fan of the wet stuff flying in his face, and being the good mother I am,
When Matt got home he had a package from our PO box that included an incredibly sweet letter, bath and pedicure goodies for me, and a Fisher Price Love to Play Puppy. Thank you so much, Kendra and Melanie. He loves it! He sat up on his own for a long time and played with it. Matt sat behind him and just caught him as he fell over, but he did great! As long as he stays still, he can stay up for a good while, but the problem is he's really into this bouncing stage, so he gets overly excited and starts toppling over. He's just the cutest.
See?
I'm a little bit in love.
And finally, here was the view from our back deck this afternoon. This was soon after the snow started. We have A LOT more now.
I've heard a lot of different things, but it seems we will get anywhere from six to ten inches. That is a VERY big deal for us. It's so great. All the kids in the neighborhood got off the bus screaming in delight today and were out in their yards nailing each other with snow balls within a half hour. Man, a two hour early dismissal and LOTS of snow on the last day before a two week Christmas break... I can't think of anything much better than that. I was pumped for them. And now a kid and his dad are night sledding out in the middle of the street. It's so great. It actually makes me feel sort of giddy just watching them play in the snow. I can't wait til Jonah is old enough to do all those things. I hope to at least get some pictures of us holding Jonah in the snow tomorrow, but it's pretty cold and wet out there, and well, it's just pretty cozy in here. :)
Okay, that's it for me tonight. I hope those of you who are getting snow who don't usually are enjoying it. But I also hope that it clears up soon so those of you who are traveling can still hit the road. We're hanging around here for the holidays, and our families are coming to us. I'm pretty excited about doing Jonah's first Christmas here and especially happy about not having to pack bandage supplies. That's a pretty rockin' gift in and of itself.
Subscribe to:
Posts (Atom)
