Sunday, December 13, 2009

MUCH better day

Something else: I just saw that I Heart Faces featured Lauren as their Fan of the week and posted about Jonah and EB on their site. Pretty cool, huh?

Jonah ate 27.6 ounces today and has not thrown up since 7:30 last night. That means he has not thrown up in 25 and a half hours and 35 ounces!!!

Praise God!

He's been on soy formula since yesterday afternoon, so I'm hoping that's made the difference. Oh for it to be such an easy fix! That would be so unJonahlike. I don't know if it's a whey protein thing or a lactose intolerance thing. I know soy formula still has whey protein, but I'm assuming not as much. I think it is not uncommon for EB babies to have lactose tolerance issues. Something about the layer that has the lactase that breaks down the lactose sloughing off so they can't break down the lactose... something, something, something. I don't really know.

Anyway, I am not in any way saying our problems are solved (I don't think 24 hours is enough to really say), but today has been much better than the previous two days, and we are so thankful. He's been on the Good Start and Pediasure (with additional Beneprotein) since Monday, November 16th, so he's been having LOTS of milk protein for about three weeks, but maybe it's just now catching up with him? I have no idea.

Thank you so much for praying. Whether our issues are solved or not, Jonah had a nourishing, peaceful, non-puking day. And hopefully he won't be up seven (that's right, SEVEN) times tonight like he was last night. Sheesh.

And finally, here is a cute picture from last week of Jonah looking out the window.

32 comments:

Sarah Duncan said...

Yeah for a better day! I prayed, and I'm still praying.

brandie said...

That's incredibly, amazing news! wooo hooo! And I'm with you on the idea that even if it's not the fix, at least he had a break with a good day!

Oh for cute!(the pic of Jonah) Soon enough he'll be running outside!

Meghann Gehring Turnquist said...

Yay Jonah!!!
Looks like somebody is looking out for Santa Claus ....

Cari said...

I am sure you are tired of "advice", and I have started and stopped several times, but I decided to go ahead, obviously. :-) EB complications asside, I experienced it taking 3 weeks to build up an intollerance to a formula. My nephew who went through every formula out there finally was able to do goats milk. something about the protein being different. So exciting you guys had a good day, and the decorations look great.

Jessica said...

yay yay yay!!!!! I was praying for you guys so much this weekend as my son was having belly issues. It wonderful to hear that Jonah had a better day. Continuing to lift you guys up!!!

Heather said...

Woo Hoo! Look at all the hair that boy has!! Cute, cute, cute!

Aaron & Laura said...

I didn't figure out my Gabe's lactose intolerance until he was 10 months old and we switched him to the 'next step' formula (more like milk.) The screaming fits every 1/2 hr tipped me off... ha... so don't feel bad for not trying soy earlier! You beat me to it! :)

Corby and Lauren said...

I certainly hope the soy helps as much as it helped my little Harper! Her reflux was pretty bad too, and it was a life saver! Praying that tomorrow is even better for y'all!!!

Lauren said...

I was hoping you saw that today. So cool that they wrote about your story and linked about his magnets, too! And so happy about his eating today. We'll keep praying...

Rochel said...

I just saw that at I heart faces. Way to go Lauren! I saw that they put something about the magnets too-so cool! I loved that picture she took!
Eat Jonah! Eat! (And keep it down...:) )

Cristi said...

Glad yall had a better day. AND I LOVE all your decorations!

the*4*of*us said...

I'm so happy that Jonah had a better day!!!!

Sewconsult said...

Look, he's up on his knees! What a cute pic & great news!

Melanie said...

I am so happy that today was a better day for Jonah and you! I will continue to pray that Jonah will do well with his feedings and keep them where they belong - in his belly! You are an amazing mother and I gain strength from you everyday! Jonah you make me smile!

Katherine @ Grass Stains said...

Jonut, you ROCK! I know you like keeping Mommy and Daddy guessing, but I'm so glad you gave them a break today. Love you, baby.

Melissa @ The Littlest Lobo said...

I've been praying for Jonah today. Now I'm saying a prayer for you. I know how hard it is to lose a baby. I know it must be just as hard to have to endure sweet Jonah's EB and related issues. I'm also praying for a miracle and healing of Jonah, and peace in your heart for the loss of baby Gabe.

Laura A said...

Praise God for a better day! Will pray that you all have a gush-free, sleep-filled night.

Love the window pic! Just wait until he starts climbing up on the couch by himself!! :)

Love from TX!
Laura

Laura Kathryn said...

More people becoming aware of EB...what a great thing! AND I just got your Christmas card - PRECIOUS! It is now hanging on our fridge, so there will be lots more college students & high school YL kids learning about EB, too! Thank you so much for the sweet thought :)

Praying for Jonah's insides to start working again and for all to run smoothly in the Williams household...

The Castro Family said...

Just a visiting "I heart faces" member! I am touched by your family and your strength. We also lost our son at 38 weeks along. :(
Please know you are all in our prayers. Jonah is a special blessing!!

Erin said...

He's such a cute little chunk looking out the window! :)

lifelaughsandlove said...

Oh, Praise God! I was so sad when I read your last 2 updates, but didn't have a chance to leave a comment saying that I was praying for you. I'm so thankful that you have gotten a little reprieve today and pray that it will continue for Jonah. I totally feel your pain on the up 7 times a night thing. At 14 months old Anthony still likes to keep us on our toes. He had croup 2 weeks ago, and now has a lingering cold and has been up 7-9 times more nights than I care to remember :) Praying for some really great sleep for you and Matt tonight!

~Amy

Melissa Stover said...

i'm new here from i heart faces and just read a little about your baby's condition. it's heartbreaking. you seem so strong and i'm so glad you have the Lord to lean on. i will be praying for precious Jonah and your family.

Sarah said...

I soooo hope the soy is what works! We did soy after leaving vomit flavored nutramagin first...as it's less apt to cause the MPI issues. Soy formula doesn't have whey...so if that is his issue...you might just be good to go

Sarah

Rachelle said...

Hi There...
I came across your blog from Confessions of a Working Mom (and actually the I heart faces site too). I read for HOURS last night (much to my husbands dismay when I didn't go to bed till 12:30)... but I digress.

Your life story is so amazing. I studied human genetics as an undergrad and yet I've heard nothing of this disease. Jonah & your family will always be in my thoughts and prayers!!! I get so angry thinking of anyone who would send you rude comments, as if they have a place to say such things. I cannot believe people. But know that for those couple of horrid people, there are thousands of nice people to over run them and our hearts are with you! We all do what we need to do and each situation is unique. I am always of the philosophy, don't judge me unless you've walked a mile in my shoes.

Again, I digress... my main reason for commenting is to give you some info I found very useful.

My son is a "normal" albeit skinny little dude (went from 25% to 5% in 3 months), so I can sort of (in a tiny tiny way) relate to your fear when there is no weight gain. For my son, 8-14 months were very very hard... it was challenging to get him to eat anything but very sweet things. FINALLY things have gotten better between 14mon & 15 months, I can actually get him to eat veggies & meat too (and yes my friend, I am VERY familiar with lock jaw and head shaking and many other ways to avoid food, my current favorite, taking MOUTHS full of milk and SPITTING them out. Fun.)

My friend suggested a fantastic book to me (you've probably already heard of it) called Super Baby Food. http://www.superbabyfood.com/
I am not a nutritionist, but I try to take diet very seriously (mostly b/c I have inherited high cholesterol). This book gave me great ideas for preparing nutritious high calorie foods. I imagine Jonah will need everything he can get from his diet. I now make my own cereals (it is actually easy, you just get grains & grind them) so that I can have my own mix of many grains (good to keep them regular!). I've also gone to grinding nuts b/c the fat in them is SO good for babies (I am now a microbiologist who studies fats & lipids for a living and have really become a fan of nuts!). Anyway, just thought I'd let you know about that since the book has helped me a ton. If you have any questions, please feel free to message me.
I am glad he had a better day & I hope today is even better!!!!
~Rachelle

Linda said...

Hi Patrice;
So glad that Jonah had a better day with his eating. Hope you found the solution. It is so heartbreaking when your baby doesn't eat well and all the gushers!
Hang in there and remember we are praying for you and Jonah.
Happy belated birthday too.
Love Leah's Nana

Wanda Wilkinson said...

Happy belated birthday, & happy day with no gushers yesterday!!! Hope the same continues.

Love the picture of him on his knees looking out the window--maybe looking for daddy to come home from work or mommie to come home for TARGET or maybe just looking.

Still praying & hoping for many, many better days to come

Love, Wanda

Amanda said...

What a sweet and wonderful mom you are! Little things like having Jonah propped up so he can look out the window must mean the world to him. He is very lucky to have you. (And I'm sure you feel the same about having him!)

erin said...

i am praising Him right now!!! and props to you and Matt for being such awesome parents...jonah and gabe are two very lucky boys! hope he continues to not puke his little guts up anymore and he sleeps well too! much love and blessings from ga~erin

erin said...

p.s. love the pic of jonut...want to see more please!! miss his precious little chubby face! happy monday ya'll. much love and blessings~erin

Sara said...

I just wanted to let you know, today I laid down with my 2 year old to take a nap, and I dreamed of Jonah. I dreamed that there was a huge convention in his honor, and I was there with your family (felt like I was with celebrities!). Anyway, that is about all I remember from the dream. I just thought you should know! It was kind of awesome finally "meeting" all of yall, LOL!

Continuing to pray for Jonah, I hope that the soy formula truly is a fixer!

xoxox~

kimmie said...

i LOVE pictures of the back of a busy baby's head! My 11 month old daughter likely has the most photographed hind-head ever :) so i love that picture of Jonah!

Katherine @ Grass Stains said...

I'm about to head to bed but wanted to tell you that before I fall asleep, I'm praying for you guys! You're covered from approximately 1:09 to 1:20 your time. Love ya!