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.

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

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.)

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!!!

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.

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.

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.

sip and shop to raise money for debra

Quick Announcement -

J. McLaughlin, a clothing store, is having a Sip and Shop tonight at their store in Bronxville, NY, where you can socialize and shop during special hours. Best part: 15 % of your total purchase will be donated to DebRA. Matt's sister, Kim, is helping host along with a wonderful lady named Bonnie who works for J. McLaughlin and came up with this whole thing. Thanks so much Kim and Bonnie!

If you don't live in the area or can't make it (crazy time of year!), you can look at their clothing online (www.jmclaughlin.com) and then can call in your order and your 15% will go to DebRA too. You can call the store between 6-8 pm when the Sip and Shop is going on or you can call earlier than that and just tell them to ring up your order with all the other orders they ring up tonight.

Here are the details:

Time: Tonight 6-8 pm
Where: 75 Pondfield Rd. Bronxville, NY
Number to order (now or tonight): 914-779-4613
To browse online: www.jmclaughlin.com

And guess what else?

Jonah has a sweater named after him. Talk about crazy.

You can see it here.

Anyway, I hope you enjoy shopping and knowing that 15% is going to DebRA. I have so many great things to say about DebRA. They do a lot for research, but from a Mommy perspective, I love their patient and family advocacy programs and how they help all of the EB families out there. They reach out in a time you feel completely lost and alone. It's not nearly as scary once you know you're not the only ones out there. They send every new EB family a care package when you first get home with all the EB basics to get you started. AND they answer all your questions immediately and are there for you 24/7. DebRA has already sent all the supplies to our anesthesiologist here so Jonah will be well taken care of should he end up needing a g-tube. I just can't say enough great things about them. I especially love me some Nurse Geri, but that's a whole other post. :)

Happy shopping!

jonah photos

Some photos from the last couple days.


I tried giving Jonah a paci today in attempts to stop his (really-going-to-send-me-over-the-edge) teeth grinding. I don't know how he's grinding his teeth. He has two on the bottom and a tiny little itsy bitsy sliver of a tooth on top. Apparently that sliver can do a lot of damage. Seriously though, besides it making me completely mental, I am a little concerned that it is going to wear down his already weak teeth.


I played around with my new Photoshop actions (thanks, Katie!) on these, but don't ask me what's what. I have no idea. I was just clicking stuff.

i'm running out of post titles

Jonah has really struggled with his eating today. He has a blister on the tip of his tongue that he won't let me drain, a bloody boogered nose that is either stuffed up or bleeding, is EXTREMELY constipated and has a really bad spot on his upper lip. But more than anything, I just think he doesn't like the taste of the soy formula. He loves the stuff that makes him throw up and hates the stuff he can tolerate. (Heavy sigh.)

Right now I'm attempting putting just a half an ounce of Pediasure to help flavor the (gross) soy formula, hoping he can tolerate just that little bit. For the constipation, I've tried juice a couple times and put dark Karo Syrup in his last bottle. (Unfortunately it's hard for those things to help when he won't really drink his bottles in the first place.) We haven't had to pray for poop in months, but he's straining, turning red and crying every time he tries. This is the first time I can ever remember it hurting him like this. It's very sad.

On a much brighter note, one of my best friends and college roommate, Katie, came to see me, and I was so, so thankful to have her here, especially on a day like today.



I had all these ideas that we would go take some pictures with Jonah and go to Target and so on and so forth. But since Jonah wouldn't eat today, I didn't want to take him out as I was trying every couple hours to feed him. I was disappointed, to say the least, but Katie didn't mind at all. We just sat around, and it was okay. She spent the day listening to me complain, showing me how to download actions for Photoshop, and making some light deflector contraption for my camera so the flash won't blow out pictures and make Jonah's boo boos look even worse.

This is her current status on Facebook: I read something once that said the best friends are those with which you can sit on a porch swing for hours saying nothing, yet enjoy their company completely. I think the same holds true when it's a couch and rocking chair watching the Cosby Show, Backyardigans, and Ellen. Good times.

And now I'm all teary-eyed. Thanks a lot, Katie. I'm pretty sure you did that on purpose. Oh yeah, and you left your hot glue gun and your bag of crafty supplies here, so you should probably (drive an hour and a half and) come over tomorrow to get it. I'm just sayin'.

And tonight I leave you with this - my favorite scenes from Elf... just because.