Sunday, August 30, 2009

my weekend - by: jonah

Hi everybody! It's me, Jonah, again. I had a nice weekend I wanted to tell you about.

Yesterday I took a two hour morning snooze on the floor. I was watching the Little League World Series with my dad, but man, I just got really tired, so after my bottle, I zonked out.




There's nothing better than a good, long nap. "What, Mommy?" (I hate it how she always has to read over my shoulder.) "What do you mean - What's a nap?"


After nap, I got to have some Nudey-Nudey Time. It was pretty great, but too short. Alas, Nudey-Nudey Time never seems long enough. This is my blue dog my Nana got for me. I like to wrestle him during Nudey-Nudey Time. Sometimes I also bite his face. Don't worry, he likes it.





What's that?



You want your Nana to get you a blue dog too? Okay. I'll have my Nana call your Nana.


After Nudey-Nudey Time, I took a bath. That's always pretty fun. I have a mini-basketball goal and a water wheel that I like to look at. Mom has a hard time keeping water in the wheel, bathing me, and keeping me from rubbing my belly all at the same time. See that burp cloth on my belly?




It's not just for decoration. That's mom's (not so effective) attempt at keeping me from rubbing blisters on my tummy. That and rubbing my feet together are my new favorite things.


Afterwards, I got my bandages changed. I was such a brave boy, and I only cried a couple times. Most of the time I was pretty content.





Wait, what did you say?




You think I'm the cutest baby ever?




Why, I'm blushing. You're too kind.


Aunt Sarah came and helped with dressing change, and then we got to hang out until my afternoon nap. We just sat and held hands...

... and then she gave me lots of kisses.

After I got up from nap, Nana, Aunt Sarah, and Aunt Shaina invited us to dinner. Mommy wasn't sure we could go, because almost every time she puts me in my car seat I have a Niagara Falls vomit all over my bandages and the car seat.

But she decided we should try it...

So I threw up all over myself. (Sorry... I don't have a picture.)

Mommy started to flip out (because, like I said, I do this 90% of the time she puts me in my car seat), but Daddy helped change bandages while Nana cleaned the car seat. Everybody really thinks Mommy needs to get out of the house more, but it sure is hard when I'm throwing up all the time. I can't help it, and Mommy knows that, but it's still pretty frustrating.

So... we finally left the house and headed here...


I was content, although I didn't want to smile for the camera. I just played in my car seat until I fell asleep.


Here is a picture of some of my favorite girls in the world. That's Nana, Aunt Sarah, and Aunt Shaina.


This is Mommy being a dork. Don't ask me what she was doing, because I have no idea. Like I said, she doesn't get out much.


Here are Daddy, Mommy, and me. I was such a good boy. True, I fell asleep which meant I didn't go to bed until 11 and then was up (on Mommy's night) from 3:45-5:20 am, but Mommy still says it was worth it. That girl loves her some chicken tacos.

And guess what? When it was time for the bill to come, the waitress came and said someone who preferred to remain anonymous had already taken care of ours. Isn't that amazing? So anyway, whoever you are, wherever you are, Mommy and Daddy said to tell you thank you from the bottom of their hearts. That was so extremely nice of you.
And tonight I got to go to Pinedale in the Park at Tanglewood and see all my friends. I also got to hear some live music which I love. Ms. Gina (GiGi) held me almost the whole time, so Mom and Dad go to relax a little. Mom says she has some pictures, but that will have to wait for another post, because she doesn't have time to upload them for me right now. (I haven't learned how to do that part yet.)
*************************************
And I was wondering, while I've got the computer, if I could put in a prayer request for my mom. She usually doesn't ask for prayers for herself, but I think she needs it, so I'm stealing the computer to ask for her.
She is really struggling right now because I'm throwing up so much, especially every time she tries to put me in my car seat. Besides hating it for me, she is having a really hard time not being able to get out and about with me. The only time we'd be able to get out is after dressing change, and by that time, the help is gone and my bandages are nice and clean. She's afraid to risk me vomiting on them and not having any help to get them changed. And even though Daddy can watch me in the evenings and offers for mom to get out, it's just not the same. I catch her in tears a lot, and I think she is grieving a lot over the things she doesn't get to do with me. She doesn't want to go out in the evenings without me. She doesn't need a break from me. She wants to be able to take me out and show me the world... go to the library or Target or the grocery store or to the park like all the other moms and babies. I think she's struggling a lot with grief and just plain jealousy. I heard her tell Dad that she can handle all the EB stuff, but that it's the vomiting all over my bandages that is going to send her over the edge. She doesn't understand why I have to deal with all the EB stuff, plus very severe acid reflux. On top of the sheer inconvenience of it all, she worries about me throwing up all my medicines and not getting enough calories. I barely eat enough as it is.
So anyway, if you could just pray for renewed strength and perseverance for my mom, that would be so great. She tries to handle all the EB stuff with a relative amount of sanity, but I really think she's on the edge...
Thank you all so much for praying for us. Mommy says I'd be completely blown away if I really knew the number of people who pray for me every single day. I know she is.

124 comments:

Kirsten said...

awww sweet jonah. we will pray for your mommy, and for you. you are a very precious family.

Nancy said...

Dear Jonah,

My mommy and I pray every day before my nap and bedtime for you. But we'll definitely add your mommy to our prayer list!! She is so blessed to have such a fabulous baby man like you! Prayin' in PA!

Your bud,
Noah

jenlar3 said...

Jonah, Thanks for letting us know your mommy needs prayers. We will get on that right away. I am sorry that you have problems when you are put in your car seat. I wonder if it is possible to rig up something to catch the vomit or keep your bandages clean? Anyway, just a thought. And you certainly are the cutest baby ever!!! Thanks for sharing some great pictures! Take care, love ya!

Marcy said...

Praying for your mommy tonight. Thanks for letting us know!

Anonymous said...

Praying, precious ones...
karen in clemmons

Melissa said...

Patrice,
Praying for the strength that comes from Heaven for you. May the joy of the Lord be your strength. Praying for Jonah's reflux to be gone in the name of Jesus.

(And I'm just tickled pink that someone picked up the tab for you at Chili's. Goodness and mercy are following you!)

Amber Schmidt said...

Mr Jonah... prayers on their way for mommy and you. Hopefully God will touch your tummy and keep you from puking in the carseat all the time and then you and mom can make out like bandits to Chick Fil A, Target and all the other great places that are awaiting your presence!

Penny said...

Jonah, you were lifted up in Sunday School this morning, but we'll definitely have to add Jonah's mommy to the list.
To the anonymous check picker upper: that was SO SWEET!!!
Patrice, you are surrounded by angels, especially a beautiful, blue-eyed, pint-sized one. =)

Jaci said...

Patrice,
My son didn't have reflux or EB but he hit the peak of his puking around 6 months. I pray that it is the same for Jonah and the puking starts to subside soon.
I was also thinking along the lines of jenlar3, maybe you could drape something big and waterproof just under his neck to catch the impending puke?
Jaci

Happy and tired said...

Oh Jonah. Consider it done. We will pray for your mom.

Also, tell her that Olivia (7 y.o. now) screamed for the first year in the car so her mom never wanted to take her anywhere. It got her so freaked out and frazzled that it took any of the fun out of going places. Hopefully, your puking will settle down sometime and you can go check out all the cool children's librarians in town.

Peace to you (and your tummy!).

Sara said...

Sami HATED her car seat too. She never threw up, but she SCREAMED the entire time when she was in it. I am not sure which would be worse. Maybe bring the car seat into the house and put him in it while in the house and then into the car. Does he throw up when its moving at all?

Sami did do better when we got her a bigger car seat..like the ones for when babies get too big for the infant carriers. She was able to sit up more and see out the window better. Hopefully this is just a phase and he'll stop it really soon!

Anonymous said...

Hey Patrice,
I so wish I lived closer. I would totally come help you with bandage changes etc.- whatever you needed.
I would love to keep you company at the park with my little girls and my baby girl- just a couple months older than Jonah.
But, since I cannot, I will for sure continue to pray for you and all of your family.
I know we have never met, but I'm sure we'd get along just fine:)
You take care,
Carlee(in Canada)

Anonymous said...

Done. sleep tight Jonah.

Jill in MN

Rebekah said...

Jonah, you should ask your mommy to make you a blogger account and make you a secondary author of her blog. It would be cute to see your name at the bottom of the post :)

Courtney Connelly said...

Jonah,
I have never posted before, but have been reading about you for many months now. Thanks for letting me know that your mommy needs prayers for strength right now, I pray for her often and will so extra this week. You have such an amazing mommy, you are one blessed little boy. I love reading your blog because of your mommy's honesty, it is refreshing and inspiring. Please tell her I am praying for her this week and thanks for your post! :)
Love,
Courtney in Oklahoma

Anonymous said...

Dear Jonah,

I am praying for you and your sweet mommy.

*leo in haiti*


PS: My mommy wore a shirt the other day with her name and your mommy's name on it. It sure did look ancient to me. Something about JGSC. Soooo 1996.

(allisonevanslowe)

lifelaughsandlove said...

Your mommy is so brave, Jonah! It's okay if she needs to let us know that she doesn't feel as strong as we all think she is. Many of us mommies out here in the blogosphere admire her for the love she shows you, and the sacrifices she makes all to be sure that you are healthy, loved, and made to feel like the most important little man out there! I think you are just the most precious little guy, and you are truly a miracle. God is using you to bring glory to Him, and your mommy and daddy should be so proud of you and so honored that God chose them to help carry out this miracle.

~Amy

P.S. - The spitting up will get better. I was just commenting to my mom today that Anthony barely spits up anymore (he is almost 11 months now). He used to spit up all over the place, every time he ate. Now that his stomach muscles have developed a little more he can hold it down better. The car seat really does put their tummies in the perfect, scrunched-up position to cause them to spit up. Is there any way you can try to "force him" to do that before you put him in it? Like when you can put a big old towel over his whole body while you try to get it out?

I learned a burping technique that was AWESOME! Basically you sit your baby in your lap with their back as straight as you can make it. Then you literally try to fold them in half, by bending their body forward, while keeping them in the sitting position, with their back as straight as possible. It would produce the biggest, most effective burps and helped reduce the amount of spitting up because we were getting the air up more effectively. They key is to keep their back straight and get them as far forward as possible. It might be worth a try!

Ben said...

i pray for you and your sweet Mama all the time...hugs, prayers, and blessings ~erin

Quilting with Jannette said...

Sweet, sweet Jonah.....
I pray for all of you nearly every day, but it's good to know what to pray for specifically. Your note about your mommy was really helpful - thanks for putting her thoughts and fears into a note for us!

Tanya said...

I just wanted to let you know that my son, who is now 7, had severe reflux as a baby. Same as your sweet baby, my son was always throwing up. Our doctor told us to get him out of his infant car seat and into the next stage because his tummy was too bent in the infant seat, pushing everything up. At 8 weeks old he was in the bigger car seat. It did help but the bad part was that you couldn't just bring him and the seat with you. I always had to pack him or put him a snugli. My son grew out of his reflux by about 2 years but now at 7 it is back. We have him on meds but we are waiting for our appointment at the Children's hospital in Calgary AB, Canada to get things checked out and see how we are going to deal with it. Your son is beautiful and the reflux does get better!

Kelli said...

Precious sweet Jonah, You can count on me for prayers for your mommy! She is extra special and she loves you so much!!

Corby and Lauren said...

Sweet Jonah,

I loved reading all that you had to say! And more specifically, thank you for telling us about your mommy! I always love having specific ways to pray for y'all... so thank you! I will be praying for you to grow out of your acid reflux and in the mean time, strength and patience for your mommy! You are such a special little boy. I just wish I lived closer so I could help (even though I'm a stranger!).

Melissa said...

Patrice, I will say an extra prayer for you. I'm sorry. I pray for you all the time, but never comment. I'm sure there are others like me, also. Take care and don't worry, you'll get through this and you are doing an amazing job. Maybe you can put something over him in the car to catch the puke?

Kristy said...

Patrice, My oldest son used to throw up in the car all the time. We started lining everything with towels. We would lay a towel down in the car seat before we put him in and then lined the back of the seat (of the car) with towels as well.Funny thing is his lovey became a towel :) and now he still at 10yrs old is soothed by the feel of a soft towel. Prayers for renewed strength from our Heavenly Father.

Frances said...

Jonah, your special mommy and you are in my prayers. God blessed you with the best mommy (and daddy) in the world! And God holds you all in His hands and will help you all through your everyday struggles. Hopefully your throwing up when you get in your car seat is just a "phase" that you will soon get over! But I'll say a special prayer for your mommy in the meantime!

Hugs and prayers!

Lynnette said...

Another great post by Jonah! And how gentlemanly (I'm sure that's a word ... right?) and sweet of him to ask for prayer for his mommy. Reassure him that people pray for his mommy nearly as much as they pray for him. Or at least that's the case in our house.

queenmari said...

dear jonah, we pray for you and your mommy and daddy everyday, but i'm going to add extra special prayers for yor precious mommy, and i hope to hear very soon that you two are out and about town having a grand time taking it all in.

you are so very cute.

blessings from wa (state, not d.c.)

Terah722 said...

Jonah, Jonah, Jonah....your posts put a huge smile on my face. I love to see the world through the "eyes" of a baby! :) Your sweet Mama is an amazing woman (I know that you already know that though!) that God handpicked for you! I'm sorry that she's having a rough time. She is in my prayers every day (as are you). Go easy on her this week....maybe try to eat some avocado or something. I hope that you have a spit up free day tomorrow (and the next....) Tell her that if she ever heads down to my neck of the woods (Sarasota, Fl) that I would love to buy her and your daddy dinner. In the mean time, maybe she'll get some sleep tonight and everything (or most everything) will seem better in the morning. Praying special blessings on your family and always, always, always for healing for a handsome blue eyed boy!
Sleep tight.
Terah

Nikki said...

Praying for you and your momma, little man. :)

Anonymous said...

I am so sorry your sweet mommy is down.I am the mother of a precious girl with cp and turners syndrome so i know the feelings of jealousy etc.Hang in there and know there will be better days. My family enjoys your blog so much, we check it every night. And jonah you are extra adorable!!!

Shari said...

Hi Jonah: you sure do type well and talk really well! You are certainly growing up cutie! I will be praying for your Mommy. I understand about all your vomiting. My oldest son who is big now had the same problem. And Patrice, be easy on yourself sweetie! I believe what you are going through is normal even though it sucks! Hang in there hon!

Shari said...

Jonah, I forgot to add one thing: be sure and tell your Mommy that the vomiting will get better. My oldest baby's went away about 8 months or so.

m4layne said...

I continue to pray for you. It is hard when you have a baby with problems and you are so limited by what helps. I have been there. Our child will be 38 in October and I can no longer lift him. He must live in a residential school due to medical needs that must be checked on a 24 hour basis.

Jonah is so precious and you touch my heart daily.

Erica said...

Will be praying! Such a difficult place you are in. In regard to the reflux/vomitting, the worst of Eli's was definitely 6-9 months, and then it just slowly started to get markedly better as he learned to hold himself upright well. Hang in there! Also, when I told Eli's OT about him throwing up every time I put him in the car seat, she said that the smart ones learn quickly how to manipulate their moms- if they don't want to be in the seat, they do what they KNOW will make mom take them out- throw up! So, though it's still hard, be encouraged by Jonah's incredible intellect! :)

Jayden said...

Jonah,
I know you worry about your Mom. But she will be okay. I was your age last year and I was vomiting all over myself and my carseat, too. But, now I'm 18 months old and it's just not an issue anymore. Sounds like your Doctor thinks you are doing great - so tell Mom you're going to be OK and soon she'll be hauling you around all over the place. Of course, us guys aren't really into the shopping thing anyway. We'd rather stay home with Dad and hang out.

Your buddy in Wilmington, NC.
Jayden

Anonymous said...

jonah I'm sorry to hear your wonderful mom needs prayers. Of course I'll pray for her. Being a mom is the hardest job in the world, but I think she is doing just fine.
Bev in Canada

Rebecca said...

Jonah,

So glad you had such a great weekend. And you tell mommy that we are praying for her here in WV - lots and lots.

Also - I know she didn't ask for suggestions (and this one needs to be prefaced with, I don't have children and have NO idea if it will work, it's just a suggestion) but I wanted to suggest maybe putting an extra cover over you (like maybe a soft, plastic sheet or a plastic sheet wrapped in soft fabric to protect you) when she puts you in the car...that way if you throw up, it will land on the cover instead of you and your clothes...I'm sure logistically it won't be the easiest thing, but maybe just until you don't get so excited to see the car seat you throw up...maybe?

Anyway - praying for you and your mommy (and daddy too)!

Michael said...

As far as the car seat puking thing: We have been there! There are 3 things that helped us the first is to use the chux to line his car seat(if possible) and then while putting him in his car seat use the chux as a bib while putting him in his seat and if needed while he is in his seat. It will catch the puke and keep him dry. The second is the put one of those changing pads you have in his car seat. The other is they sell bibs that have the catch tray at the bottom and we used that while putting him in his seat to keep him clean and dry. Just thought I would share what helped us get through those tough days we are praying for you.

Becky said...

Patrice, Just finished saying a prayer for you. God never gives us more than we can handle (which I'm sure you already know). He also doesn't mind listening when we are upset & need to vent. Not only does it make me feel better but I instantly know that I have drawn closer to the One who gives me the strength to get through it all. You will continue to be in my prayer.
In Him,
Becky

Rebekah said...

I baby sat a little boy since he was six weeks old. I had no idea what acid reflux was...but I was soon going to learn with this little boy. First of all, getting him to eat was such a chore....It would take FOREVER and finally when I would get him to eat he would puke up at least half if not more of what he had taken in. I would go through about five or six outfits a day and several baths because of the smell. Sometimes I would just strip him of all clothing and wrap him in a towel because it was useless to dress him. I know you cant undress Jonah but you could wrap him in a towel. Sometimes it seemed he had the hiccups and he would be hiccuping and puking after each hiccup all while smiling. He just couldn't keep it down.

FINALLY his parents took him to the doc and put him on the same medication that Jonah was on but I think what helped the most was the change in the formula. Instead of one scoop for every two ounces we did one scoop for every ounce of formula and tablespoon of rice cereal for every ounce. It made for some pretty thick stuff but we would just slit a hole in his bottles and he would drink it down. I cant tell you the world of difference it made. Jonah is so chubby and healthy looking...this little baby I watched (no joke) looked like someone from the Holocaust with bags under his eyes and no fat on him at all. He is plump as ever now.

I don't know, maybe you already tried the rice cereal thing...but it is worth a shot.

Hang in there momma...I can only imagine how hard this is on you...we are all here for you...anytime...for anything.

Much love,
Rebekah

Kimberly said...

Don't you worry big boy, we'll cover your awesome mommy in prayer!

Anonymous said...

Praying for you and your sweet mommy, Jonah. I consider it MY BLESSING and HONOR to do so. Thanks for asking me! I was at the beach with my kids today (it is SO nice to be 20 mins away!) and I got to thinking about the waves. How they are like life. One wave after another. They never stop. Just like life. It never stops. Sometimes, like today because the storm passed through, you get bigger, choppier waves and they knock you down and make you "drink" salt water (ask the kids...). Some days the waves are smaller and you get to relax and enjoy the waves. So, right now, Mommy is in the middle of some big waves (some of those waves of vomit, I bet she thinks!) and they just keep coming at her (and you). Just know that they will pass and you will all get to enjoy some time of the tranquil waves again. Oh, and try to turn away from Mommy when the waves of vomit are coming at her, okay? Love you, Jennifer in Southeast, NC

Elizabeth said...

Praying for you!!

beach2lady said...

I love all of the new pictures and am sending prayers from Alabama for precious Jonah and Mommy ( Daddy too ). I hope life will settle down to more normal for you Patrice. May God give you strength and peace as you love and care for your sweet son.
Linda G.

Niecey said...

I prayed. Your mommy has the patience of angels and incredible endurance. It must be so difficult and grieving is completely understandable. Healthy even.

I love that someone picked up the tab!

Anonymous said...

LORD, God- our healer. Oh LORD, please heal Jonah's acid reflux very soon, please. Let the doc's find a cure for this. Please, please sir. I believe you will. Amen

Ebeling Family said...

Dear Jonah-

Everytime I have ever prayed for you, (which is almost every night) your mommy and daddy are included in my prayer. I sure hope she knows that.
And tell her that it's ok to cry, too....God understands our tears, even when we don't have the words we need to express our prayer to Him.

Romans 8:25-27
But if we hope for what we do not yet have, we wait for it patiently.
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will.

Good night, sweet baby.

(and sweet baby's mommy ;)

em

Cathy said...

Maybe a shower curtain liner over him when he goes into the seat would catch the puke before it gets on him and then you could just rinse it off in the tub. Praying he'll get over this SOON! Orando por usted todos los días.

Marie said...

Sorry to hear you are having such a hard time, but as always you try to put a positive spin on it and find some humor. That attitude will serve you and Jonah well!

I was also going to suggest but see a lot of other people did also, that you find a way to cover Jonah so that he doesn't soak his bandages. Even a toddler's art smock wrapped around him would be waterproof and would have to help a little, right? Or a thin rainjacket? Heck, even a plastic trashbag would protect the bandages wouldn't it?

Tricia said...

Just to let you know, I had already been praying every day for your mommy, because having to see your baby suffer and realizing everything they are missing out on is hard on a mom. I know. I don't know about EB, but I know the emotions that go along with being that mom. So, I pray for her at least as often as I pray for you, sweet Jonah!

Cornelius Crew said...

I have said a prayer for you tonight. I pray that God will send you healing, both physically and emotionally. I pray that you will feel his hands on your precious family and know that HE is with you and will bless you because if anyone knows the pain that you must be feeling as you watch your son suffer with so much, it is our compassionate, Mighty God! He cares for you. Our prayers are going up for you!

Kelsey said...

Jonah,
I will be thinking about your mom. Your mom is the luckiest mom in the world to have such a thoughtful son. Tell your mommy to hang in there and that she is one amazing mommy!

Love,
Kelsey

Alex(andra) said...

Hey Jonah, I'm usually just a lurker, but I thought I'd come out and tell you that my husband and I have been praying for you daily, and we will most definitely add your mom to our prayers. You (and your mom!) should know that we love telling everybody in Kansas your story when they see our magnet. It's pretty much the coolest thing ever. =)

Kristi said...

Just letting you know, I am praying for you! And waiting expectantly for news of your miracle! Sometimes God works suddenly and sometimes over time but He is the Healer! He works best in seemingly impossible situations! Someone gave me a picture once that said, "Expect a Miracle". I loved it so much and have already given it away or I would send it to you. But just think about that when you are feeling down.
I was wondering if you could put something over Jonah when you put him in the carseat? Like, a raincoat, or could you cut up a shower curtain and put it over him? Carry a trash sack in the car and throw it away when he throws up on the shower curtain? I don't know, just trying to help. I will pray for God to give you creative ideas and wisdom!
Jonah is such a gorgeous baby! He is a blessing to me, just looking at his sweet face!

Anonymous said...

Hi Sweet Jonah,

I've been reading your Mama's blog since you were born, and have been praying for all of you just as long. Figured it was time to leave a comment and stop lurking :)

My oldest had severe reflux, so I feel your mother's pain...car seats, projectile across the room, you name it. It was NOT fun. That said, we never delt with EB too. Tell your mommy she's doing such a great job!

We are praying for you, sweet Williams family,

Shannon

Anonymous said...

hi this is my 1st time posting here but I pray for you and Jonah all the time. Any way I was thinking may be you could try 1 of those big plastic toddler bibs over his front bandages in the car they have the kind with a tray on the bottom and that might keep most of his bandages dry.It might be gross to clean but it should be easier than changing all his bandages. God Bless Nana Debbie

Monica said...

Praying for your Mommy, Jonah!
Tell your mommy that my daughter (mild reflux but major car sickness) went thru a puking in the car seat phase as well, for about 4 months. She had to use these giant full-body toddler bibs to catch puke when we went out. Not fun at all.

chinamoon1420 said...

Jonah, you are the cutest baby in the world! I can say that because my baby is now 2! So next to him, you get the prize! I am praying for your mommy. I know I would want to take you out and show you the world too.
I love the VERY close up picture of you by the way! I think that is the cutest one I have seen yet!
Love, hugs and prayers to you all!

Anonymous said...

Praying diligently for you Patrice!!!
And, yes Jonah, you are the cutest baby ever!!!
OX

Carrie said...

Jonah, I pray for you and your family every night sweet boy.

Beth said...

So cute!

Patrice,

Just a thought but we have long sleeved BumKins bibs that are water proof and tie in the back. I know they have them online at Toys R Us. If Jonah spit up you could easily remove it and put another one in its place. There is elastic on the sleeves by the hands but you could just cut that piece off.

Just an idea! It has to be very frustrating!!

And of course we are praying for you! Everyone, including Mommy's need prayers!!

Blessings

Krystal said...

Jonah, please tell your mommy my suggestions (some duplicated in earlier comments). Yes, I know there are challenges with each idea, but perhaps your very smart mommy will rig up the perfect dealiebobber from our suggestions. I thought perhaps if you used a trash bag and could put a hole in it for Jonah's head, you might could get it secured so that he wouldn't be able to suffocate himself. That led me to wonder if perhaps a rubber mattress pad type of thing would be safer. I bought a length of rubber/flannel material at a fabric store for my kids' use. It's washable. Not sure how to recommend you use it to catch a mess, but it's an idea.

So sorry for your mommy's stress and frustration, Jonah. I know she's trying hard to give you the best life possible. Be good for her and let her sleep some extra hours this week, okay??? I keep praying for you and her and everyone else you love!

Anonymous said...

Baby Jonah-

Please tell your momma that I am continuously amazed by her strength and faith. I do not keep up with your blog regularly but know of your story through friends of your family. I have not ever met your momma- but use to know your daddy when he was little!

I recognized your Dad at Chilis the other day- and wanted to do something in some small way to help you guys out. I know it wasn't much- but I wanted to let your parents know- that they are pretty amazing. To be as young as they are and going and gone through as much as they have, they truly are an inspiration. The waitress at Chili's was suppose to relay that on to you- and I hope that she did.

Patrice and Matt- you are inspiration to others and your faith is amazing.

As I read through your blog today- I realized how many lives you have impacted- Whoops- I mean your mommy and daddy have impacted! Keep up the amazing work and your family will be in my thoughts and prayers.

Thank you for showing me and so many others what true faith and strength is.

Bree said...

I may have an idea for you- If he is throwing up when you put him in the carseat- due to sitting up and his reflux...would you guys be able to put him in a car bed instead? My daughter was a preemie and we had talk of possibly a car bed if she didn't pass her carseat test...so I don't see why it couldn't be used for other reasons!

I found a link for you- http://carseats.babycatalog.com/infant-car-seats/ultra-dream-ride-22022FSM

its for 5-20lbs and maybe thats something you could get and that way he can stay laying down and prevent him from throwing up and then you can get out a little :) Just a thought! I don't see why it wouldn't work!

I will continue to pray for sweet Jonah and of course his mommy!!!

Annalien said...

Patrice, Jonah is such a gorgeous baby, and if it breaks my heart that he has these awful blister on his face and the rest of his little body, I can only imagine what it does to you! I pray that God will grant you strenght and serenity. You are doing an incredible job!

In my experience the amount of vomiting decreases significantly by about 8 months of age, so I truly pray that in Jonah's case this will also be true. In the mean time,can't you cover Jonah with something waterproof for a while immediately after you put him in the car seat? I think it will do your mental health a world of good if you can get out a bit more.

Praying for you and your beautiful boy (who looks more and more like you!). God bless.

Elizabeth said...

Dear Jonah,

My mommy and I pray for you and your mommy and daddy every day. I already told my mommy about your new prayer requests...and rest assured, we are ON IT.

Also, I wanted to tell you that I was a big puker too just a few short months ago. My mommy would get so sad, because she felt like we were trapped in the house all day every day. Everytime we ventured out, I would destroy my outfit, my seat, and anything else in a 2-foot radius within 3 minutes of leaving. My mommy even made up a nickname for me that she never told anyone but my Grammie(until now) - High Maintenance Henry. Then, one day, I turned 9 months old, and it just stopped. Now, I can burp and hiccup like a C.H.A.M.P, and, guess what, no puke. When you turn a few more months old, this'll probably happen to you too...then we should have a good ol' fashioned burping contest...cuz that's what boys do, right?

**insert non-fricting chest-bump here**

Your friend,
J. Henry Chesser, 14 mos.

Cathy said...

Low-tech, low-effort solution. If you *know* he'll throw up as soon as he gets in his seat, you can shove an emesis basin under his chin and catch it? The hospital-style kidney shaped ones, but we've also used buckets and cups and .. you get the idea. (Obviously, doesn't work if he's on the go already unless you ride beside him, but it sounds immediate.)

Bonus? You can measure how much it is and get really good at estimating how much he's losing, which helps the doctors to figure out what else they can/need to do for him - and maybe make you feel better that he's keeping more down than you think.

*Really* reduced the amount of vomit-stains in my house.

Jackie said...

Dear Jonah: What a sweet little boy you are! Your mommy is always in our prayers!

Rachelle said...

Hey Patrice. Jonah is so cute and I love how you give him a voice. So sweet. Ashleigh had pretty bad reflux and the car puking got much better after 6 months. Maybe there is some hope for the all the vomiting to end soon. I am praying for you (and Jonah, and Matt).

love,

Rachelle

ps, would one of those plastic coated bibs with the folded-up-ends that are supposed to catch the food rub Jonah's neck? If not that might be a solution. Just thinking out loud.

Toni :O) said...

Yes, prayers will continue to come your way for your mommy. I can only imagine how difficult it must be but we hope that you, sweet Jonut, will grow out of your yucky reflux and SOON! Hugs to you all!

Sabrina said...

Jonah, what a sweet boy you are! And that face..melts me everytime. I will pray for mommy. I wish I lived closer to help you and mommy out, so many of us have that wish Jonah. I hope you can outgrow that reflux sooner rather than later. My little guy never had reflux just normal baby spit up but did even quit that at 10-11 months like others said.

Love & prayers.

Sabrina

Linda said...

Patrice,
My prayers are always with you-today I will ask God to help you find the strength-His and yours-to keep coping, one day at a time. I will ask Him to keep allowing you to recognize the moments of joy the Jonah brings you and to continue to see the positives in your incredibly difficult situation. You have touched so many lives-but I know that no matter how much love and support you receive-there is still a place in your heart where you are facing this alone-a mother's heart breaks in a way that no one else's can. God knew it would be that way-that is why He gave women strength beyond what we can imagine, until we need it. You will get through this.
On a practical note-I read lots of suggestions for using towels to protect Jonah from vomit in the car seat-I wonder if one of the pre-molded plastic bibs-with the neck edge protected to avoid irritating Jonah's skin, wouldn't be an easier way to protect without all the extra laundry? I will be on the lookout-might even check your favorite store-TARGET!
Take care Patrice.

Anonymous said...

Jonah,

You're such a sweetie! We'll be praying for your mommy...she's doing such a great job w/ you. Wish me and my mom lived closer...we could hang out and our moms could visit. We'll keep praying for you too.

Caleb (almost 6 mo too!) in TX

the-mommy-person said...

I love it when you blog Jonah. Mommy's great too, but it is just super special when it comes from you. :) Multitude of prayers for mommy, buddy. And daddy too. You have the strongest, bravest mommy and daddy EV-AH!

Lisa said...

I have a son who could send a stream of vomit eight feet. It was a lot to try and get somewhere before he vomited all over himself or his twin in the carseat next to him. We would get in the car (and declare success), then the end of the drive way (and declare success), then we would get to the stop sign at the top of the street and BARF. So we would pull back into the garage and assess the damage. Usually we only had sternotomy bandages to redo, but a lot of the time up would come the NG tube which I had such a hard time putting back in, especially if all the tegaderm had to come off and be put back on. Anyway, what he did to help was make a towel (or you could use a really soft blanket) and put a face-hole in it or even a neck hole using an old t-shirt collar, then we would put it on with the part behind pulled up in the back (to catch the part that didn't go as far) and put the rest of the towel over the buckles and the baby and the seat. I am not sure if you can picture what we had going there or not. But it was a real sanity saver because the only time my babies didn't scream non-stop was when we were out and about, which we could only do in two hour bursts because our feeding pump was not really portable and people really give you the stink-eye when you gravity feed with a syringe in a restaurant. Anyway, maybe you would be able come up with something like our vomit catcher that would work for Jonah.

Gene and Annie said...

Praying for your mommy sweet Jonah! She's one very awesome woman of God!!

Laura A said...

I love you, sweet Jonah. You tell your mommy that I'm praying for her right now.

Love from TX!
Laura

Wendy said...

I will definitely put all of you on my prayer list. You received many good ideas here - see if you can adapt one to your sensitive skin situation. Thank you for sharing Jonah's story with all of us. You continue to inspire people with your strength. Hugs and prayers!!!

Lorraine-bo said...

Good post, Jonah! Praying for you & your Mommy & Daddy. You are so precious! I especially love the pictures of your nap on the floor!

Kelly said...

Patrice :
I'm crying this morning as I pray for you. I was having a hard day yesterday with just new mom struggles and now I feel like a horrible, selfish mom thinking about the struggles you have. God needed to remind me today to pray for you. I wish we lived closer - I would come over and help you with Jonah and he and Harper could play. She thinks he's really cute!
Hang in there - I know it has to be so hard and you must have a lot of down days. You are an AMAZING person and mom! Praying for especially hard today.

Neighbor Wars said...

Oh sweet Jonah...I love your pictures! You are the cutest thing ever for sure! Your mom takes great pictures! I will definitely pray for your mommy! I remember when my kids were small and I couldn't get out of the house...it was sooooo hard!! And my little Billy had colic so bad. I couldn't take him anywhere!! Its hard when you can't take your babies out. I'll be praying you stop throwing up Jonah! That was so super nice that someone paid for your meal! Its great to know there are special people still in this world!! God Bless,
Ellen

dg darling said...

Oh sweetie...hang in there. I cannot even imagine how frustrating this all is on a daily basis. I pray for you daily and will continue to do so. My kids had reflux, yes exorcist style, and it is NOT fun. Add in the EB and extra dressing changes and I can see why you are so overwhelmed. I agree, it's not fair that he has reflux too. Have you tried putting him in his seat when the straps are loose and then tightening them slowly after you buckle them? That helped some with my babies. Also, when I would put them in I would have a couple of burp rags on the sides of their heads and and a towel ready in front to catch it. I don't know if that's realistic with the EB or not. If didn't leave the rags there, they just helped right at first if the puking started right up front. Anyway, I pray that the reflux calms down SOON and coming from someone who had a perfectly healthy baby and still had a really hard time, never be afraid of some meds and therapy for awhile to get you through.

Nora Lee said...

Jonah you write the best posts! Tell your mommy we are all praying for her and of course you and daddy too. Bless you all :)

mkmom591 said...

I've been reading your blog for a long time. I know you are always concerned about Jonah's face. You might try having him sleep/lay on a lamb's wool pad. It's very soft and might cause less friction than a sheet or blanket. Hope the vomiting subsides soon. My daughter was projectile vomiter so I know how hard it is. Blessings to you.

Anonymous said...

I don't know if this would be an option, but my daughter threw up every time I put her in the car seat too. I took her to the chiropractor and it made a world of difference. Never could hurt, unless there is something with the EB, that may make a difference. Good luck and you are in my thoughts.

Ani said...

prayers going up!

Wanda Wilkinson said...

Dear Jonah, Yes you are the cutest, most awesome, loving baby around. Of course we will pray for your mommie & daddy too, they are always included in my prayers. They have the most wonderful precious little guy around. God knew what He was doing when He blessed them with you.

Lots of good ideas have been posted so maybe mommie can find something to work so she can take you out to show you off to the world.

You have such a great family.

I must say I do love looking at all of these great pictures of this handsome boy...just consider, if you weren't puking so much how bit you would be!!!

Love & prayers

The McCullough's said...

Just so you know...Ellen loves Jonah and really likes looking at his pictures! Thinking of you and hoping EVERYTHING gets better/easier.

Christina said...

Dear Jonah,
Your tell your sweet mommy, who was chosen by God, that I already pray for her everyday! You are such a lucky boy to have her as a mommy and she is blest to have you as a son. She is one of the strongest people I know, not that I really know her in person. I am a NICU nurse at Forsyth and was there the day you were born. I have prayed for you since that day. Please give mom extra kisses today.

Christina

Bellamomma said...

Hi Jonah! My Noodle-girl & I have been reading your site for a while, but we never seem to have time to write you. We've been praying for you since you were teeny & we're so happy to see how big you've gotten. Noodle loves to point out all your baby pictures while I read to her!

Someone may have told your Mommy about these already ~ but just in case we'll tell her too ;) Noodle used to have horrid reflux & would throw up in the car too. I got a large waterproof lap/bedpad & tucked it up under her chin (over top the carseat straps) and it caught the vomit & kept her clean. When she would throw up I could just pull it off & toss it in the wash without worrying about her clothes. She liked to hurl on the way to daycare. Constantly. Your Nana may have to rig a pad with some soft soft material at the top to keep it from rubbing you wrong ~ but maybe it could catch 90% & keep your Mommy from having to do a total dressing change on you ;)

(We found ours as bedpads at CVS pharmacy for about $13 for a pad big enough to cover a pack-n-play mattress) HTH!!!!

Melissa said...

Patrice,
I am praying for you and sweet little Jonah. I love reading your blog. I think I found it through Kelly's Korner. This is the first time I have commented.

I, too, lost a chid at birth, so I know that pain.My daughter was born at 34 weeks with Trisomy 18 and lived 2 days. I now have a healthy son who just turned one.

You are such a strong person, even if you don't feel like it. I can only imagine how frustrating your daily routine must be. I understand how overwhelmed you must feel all the time. Just taking care of a healthy child can be overwhelming. With all the dressing changes, puking, acid reflux and general uncertainty of Jonah's future health, being overwhelmed is understandable and even to be expected. I pray for patience and strength for you and for healing for Jonah. He really is the cutest thing!

Anonymous said...

Sweet Jonah, thanks for the update! I love your commentary! And mommy Patrice. You are 1/2 through the 1st year, the hardest year in any baby's life and probably in mommy's. Keep plugging along. In the meantime, one other thing to throw out there. My children were both Milk/Soy Protein Intolerant. Commonly mistaken as lactose intolerant (not the same thing at all). My daughter had volatile spit up/vomit until 9 months. They told me that she had acid reflux but did the actually testing with the dye and then said she wasn't. No one ever diagnosed her correctly, she just suffered through it. My son was born three years later and suffered bloody diarrhea for 12 months. He was diagnosed at 3 months and even the hydrolysed (sp?) formulas (Alimentum) made him react. I had to nurse him on a VERY strict diet (me) of dry meats and fruits and veggies until he was 23 months old. Most babies outgrow this by 9months, but he didn't until 18 months. He could have taken a prescription formula called NEOCATE. Most pediatricians are not well versed in MSPI (milk soy protein intolerance), but our GI doctors was right on it. It is commonly treated alongside Acid Reflux. It might be worth a shot. Most babies do great with Alimentum/Nutramigin, but my son was one that still reacted heavily to the milk in those formulas. Just thought I would send my experience since I have always felt sad that my daughter suffered with that vomiting because my pediatrician didn't know what to look for. UGH...parenting is so hard sometimes. I have learned to press on if something doesn't seem right, doctors are only human.

Good Luck and hope that it improves soon. At any rate, these tummy issues almost always resolve by 9-12 months on their own if nothing can be done.

Blessed1 said...

Dearest Jonah,
Please whisper to mommy that we always pray for her when we pray for you. What a wonderful mommy you have Jonah! We will pray for your niagra falls events to become less and less so that you and mommy can go out and have you some target time :) oh and mommy really need to have a sweet tea...praying!
dj from cali

Anonymous said...

praying for you and your family!! Jonah is beautiful and I love to hear about your outings with him :)

purejoy said...

patrice, you crack me up. even when you're grieving, you find humor in the ordinary.
the prayers are still going out for you and the jonahrater. (he's a great writer by the way!!)
wish i had a suggestion for puking in the car seat. maybe a poncho??
i'm praying that jonah outgrows that tummy trouble soon.
press on, sister. there really are alot of folks out there praying for you!!

Stacy aka Fahiima said...

I will pray for you too.
The convertible car seat is a good idea. We never had an infant seat for Layla.
I also had another random idea before going to bed.
Cold pressed coconut oil. Its really good for helping wounds heal, and builds up the immune system too. You could try it topically for Jonah and maybe feed him some too for the extra calories. Who knows, it might even help his tummy too.
It was just something that came to mind and I thought God was leading me to tell you guys.
Blessings to your family.

Nicole said...

Haven't you suggested to your mother she could hold up a bowl to catch things when you are vomiting?
I used to do that for one of my daughters... It makes much less mess!
I used to get very good at cutching all that!
Or can't she make you a giant bib that will cover you up and protect you the time you are sick?(because she knows you are bound to be sick!)
There must be a solution!
Help her to find one little cutie!

Ginster said...

Hi Patrice, I posted to you about awhile back about how my children were huge vomiters when they were babies too...that it only lasted until they were 6-8 months old and sitting up. I hope that it will only last that long for you too. I also remember that the car seat was a problem too. I think that it is caused from them being folded at the waist and the pressure from the straps too. Does the vomiting always happen shortly after you put him in the seat? If so, can't you cover him with something until it happens to catch it? I am sure that a tie bib is out of the question, but I used to buy bibs that had a big pocket on the bottom to catch stuff, perhaps you could fashion something to work. You need to be able to get out, and I know you are determined, there has to be a solution! I remember my worst puke episode: I was in a fancy department store. Needed to nurse, went into the "womens lounge" and sat on a sofa to nurse. When I put my daugher up on my shoulder to burp, she proceded to unload her entire stomach down my back and onto the sofa!!!!!

ourbobmarley said...

Dear Jonah,
Ask your mommy to look for one of the children's art aprons in Office Depot or Wal-Mart to put over you while you are in your car seat... it's large enough to cover you from top to bottom, Vinyl for easy clean up and they come in cute patterns. This way your mom can remove & clean it as necessary, & continue on your way. Best of Luck & God bless you all!

Mrs. Plish said...

Didn't read the other messages, but could you tell your mommy that she could get a little plastic hair cutting cover-up that can go right over you and your car seat. If she buys the really cheap plastic ones, she could just wrap it up and throw it away when you have your little accident. Your mommy is awesome, but you already know that!

Sarah said...

We had a puker...and his was motility related not reflux related. His stomach doesn't empty things in a timely manner, so it ends up all coming back up.

Motility meds erythro, reglan, bethnacol....is what did a world of difference. Reflux meds we still use, but never stopped the vomitting.

For my son between puke and the o2...we just never left the house...and it was very hard.

Praying things get a little bit easier soon ((HUGS))

Anonymous said...

Hi Jonah. I'm just a lurker on your blog, but I think you are so adorable, and I think your mommy is an amazing person. I had a little boy that was just a few weeks older than your brother Gabe and who died when he was 6 weeks old. I suspect maybe they've met in heaven. Anyway, I think about you and your mommy every day. Sometimes when I walk at night I listen to the Twila Paris song "The Warrior is a Child," and the song gives me strength but also always makes me think of your mommy. I wonder if she's ever listened to it - if not, I think it might help her find strength for some more days. Keep being cute and give your mommy a hug!

JenD said...

praying for you tonight! From Michigan

Jill said...

Jonah - You are one cool dude. I follow you everyday, but I keep waiting to see you on Twitter. That way we could chat about how cool our Moms are all day. I have to say you have a pretty amazing Mom for dealing with all that puke. I don't think my Mom could handle that. We love seeing the pics and hearing the stories. So keep them coming, and we will keep the prayers coming your way.

Love,
Cooper

Anonymous said...

I have never commented before, but I have been checking in on your blog for several months now. I have been praying for you and your family.
Jonah is so handsome and blessed to have such a wonderful family. Glad to hear that you got to get your tacos!

Jenny in CA said...

Sweet Jonah,
You are just the most thoughtful and precious 6-month old ever.

We are praying for your brave and devoted mama to find peace and continued strength as wall as praying for an improvement to your reflux combined with many, many good 'skin days' in your future.

Anonymous said...

I don't know if you get tired of hearing advice or stories from people you don't know, but I hope this encourages you. My nephew was a **major** puker...like I didn't know that much could come out of a child kind of puker. He grew out of it around 9 months...it just stopped. I'm praying the same happens for Jonah (before 9 months).

I'm also praying that God gives you peace.

Courtney said...

Hey baby Jonut! I just wanted to let you know that you should always wear one of those huge apron plastic type bibs whenever you get into your carseat so that if you spit up you will stay nice and dry...and really Target isn't so bad, give it a try.

Stacy said...

Always praying for you sweet Jonah and special prayers being said tonight for your mommy : )

Anonymous said...

LOVE the expressions on his face! He is sooo cute!

-Natasha

lauren said...

I always love Jonah's posts the most :) Prayers for you and your family!

Laura said...

Praying...you are so loved. Praying for grace and strength.

Team Martins said...

Dear Jonah,

Sweet one, we are praying. Through tears streaming down my face, I am beginning to pray even now. Tell your mommy that she is brave, so brave. And you are the bravest little boy-- do you know that? I know you do because your parents must tell you it all the time. You all make me want to be braver too.

May God hold you all close and may He see fit to, in Jesus' name, RIGHT NOW heal your body from the acid reflux! In Jesus' name may your EB be healed! May grace and strength unspeakable cover your mommy and daddy every moment of every day.

With Love,
The Martins' Family

Penny said...

Patrice
We had similar upchuck issues with my son Logan. Everytime we got him in the car he was sick before we got him off our road. We finally started to put a homeade "cover" over him and his seat. That way atleast when it happened we didn't need to completey need to clean him and the seat. It wasn't perfect but it caught a lot. It looked a bit like a barber cape with a pocket around the bottom. Jonah may need to have it altered in how it attaches but it worked wonders for us.

Praying for you all!!!

Leah's Nana said...

Jonah:
Thanks for the blog and I will pray for your mommy tonight just like every other night. I know what she is going through and she is always in my prayers. Hang in there Patrice, it will get better. Thanks for all the updates, I read them everyday. It's nice to know we are not alone in this fight with EB. Take care.

Anonymous said...

try making some plastic lined big cover ups to up over him in the car so if he throws you can take it off and put on a new one so you don't have to change bandages...kinda like a plastic blanket...put the plastic inside two pieces of cloth so the plastic will not be against him.

Baby Bird said...

PRAYING just what baby Jonut asked!
Love, Aimee

Sandy said...

Hi Jonah! Looks like you and your family had a fun time yesterday. That's great! You guys deserve it. Please know that I will be praying for your mommy. I have grown to love you ad your family so much. I know God will prevail buddy.... you know, God will WIN!!

Love and prayers,
Sandy in King

Weird Unsocialized Mom said...

Praying for your sweet mommy, Jonah. Did you know that you look an awful lot like her?

Nina's Mama said...

Many prayers your way, stay strong.

Your little boy is so precious.

That was so kind of someone to take care of the bill when you were out. It's amazing how many good people are out in the world.

Our life is a bowl of Barry's said...

Little man, your mama is amazing and she is being held in countless prayers tonight. You are a sweet funny guy and I have to say you have a real talent with words and computer skills!! Now, try to give your mama a break tonight and SLEEP well!!

Tribulation said...

jonah,
zachariah here. i will definitely make sure my mom prays for your mom extra especially tonight, when we go to bible study. i know my mom gets sad when she sees you guys having a bad time. but she tells me that when she looks into your eyes, she sees why your mom and dad do it.
i guess that means you are pretty special. anyway, i gotta go help mom figure out what to make for lunch so talk to ya later.
zachariah aaron thompson

p.s. my brothers and sister like to hear about you too. and they are praying for you too. someday, i hope we can meet in real life.

Abby said...

i will defintely praying for his vomiting to stop. do you think he might be prone to carsickness? because i know when i was a toddler i would throw up after a minute or so of being in the car. i know he's seen an ENT, but have his ears been checked to see if he needs tubes? those really helped my carsickness which was due to inner-ear problems more than motion sickness.
praying for your whole family daily.

Anonymous said...

You are the most beautiful baby in the world!!