Monday, April 20, 2009

jonah's article

Click here to read Jonah's latest article.

(I don't know WHY in the world they posted that last picture of me in the slide show. Yikes.)

30 comments:

Katie said...

That last picture makes me miss you even more. :) I love you guys.

The Burgess Family said...

Great article! Still praying for a blow out!!

Crystal in IL said...

Yes I have prayed for poop :) When you're baby is on high cal diet (even with breast milk + formula) and using pain killers constipation is always a concern. I'm sure you guys will consult your doctors but a baby suppository always did the trick in the hospital and at home. Helpful hint- Push the suppository in with the blunt end in first. Use KY of course :) If you push it in with the pointy end first it makes it too easy for him to push out before the med does it's job. Best of luck guys!

Anonymous said...

The article is great! Jonah is so precious.

I wanted to comment about the previous post...I love the Angel Care monitor! We have a 10 mo old son, and it has only alarmed once, when he was 6 months old (he had rolled to the foot of the bed). It gave us a heart attack when it went off at 3 am, but all was well. Also, my son did not liked to be swaddled either, but we used the Swaddle Me and I highly recommend those if you haven't heard of them. He would fuss as we wrapped him in it, but after it was on and some cuddles he slept so peacefully.

Jonah looks so happy in all the pictures! You are doing a great job :)

Anonymous said...

That is a great idea to get EB out into the limelight!! Casey is two almost now and we still get his story in every newspaper we can every year..IT's alot of fun and it educates people...People can't care about the disease unless they know it exists...that's our theory ..we continually heard..we never heard of EB...We have educated thousands of people..fairs, storefronts, educational booths at all kinds of events..gettign people aware will make them care..Best of luck to you...
beth
johnbeth91@ao.com

Melissa said...

Thanks for sharing the article. Jonah is precious!!

Kathryn said...

You look so beautiful in the Journal pics Patrice! Matt is photogenic as always:-) Tell Jonah I'm missing him today! Love you!--Kat
ps You guys are fantastic parents!

Toni :O) said...

Great article...you two are so amazing...I'm just awstruck at how you have jumped into this journey and how you are both holding up like champs. You are doing a terrific job and you should be so proud of yourself. I wish I lived closer in order to give you all a hand. I think it's wonderful what your church is doing for you. Here's hoping Jonah's tummy issues get better real soon. Sending you hugs (( )) (( )) for strength!

Anonymous said...

Wonderful article -- WONDERFUL family! You are an inspiration to all of us...even when you are "down". Prayers continue to come your way from Batavia, IL.

Stephanie said...

Great article! I know you are so pleased to be getting the word out about Jonah! Praise God.

Marie said...

Great article. I am so glad that y our paper is making the community aware about EB. We cannot get enough information out to people who don't have EB in their lives. We had never heard of it until my grandson was born with EB. Now I try to educate everyone I can. You continue to do a great job! Jonah looks wonderful!

Prayers and Hugs from Texas

Jane said...

Great article and pictures! All of you look great for what you have had to endure, even the last picture Patrice. Praying for "poop" :-). Iron will surely constipate anyone, I am sure the doctor can help you out with that. Praying you all have a good week, praying especially hard for sweet precious Jonah.

Lacey said...

Hi there, is EB what they call, the butterfly kids? I have heard of that before. Praying for him and your family, Lacey and Jax

Ki said...

That first picture of you and Jonah is just so beautiful. Great article- shows just what HEROES you two are!

Lynne said...

Okay, someone may have already mentioned this, but I haven't gone through all 30,000 of your comments (lol), but I saw in the newest edition of In Style magazine that Gwyneth Paltrow has collaborated on a swimwear line for women and kids and that 10% of proceeds will be donated to the Epidermolysis Bullosa Medical Research Foundation. Thought that was pretty cool :)

You can buy the suits at lillypulitzer.com

With much love,
Faithful reader in St. Louis

Anonymous said...

The picture of you holding Jonah really showed how much HAIR he has!!
God Bless you all.
2Shoes

Ellie's parents said...

I linked to your site from the article. My prayers are with you and your family.

I had to write you to give you a suggestion for the stain removal. Goo Gone has always worked for me to remove grease satins. It worked on A and D ointment stains. It may work for aquaphor. Just wet the stain with the goo gone. Let it sit a few minutes then wash. This even works after drying the stained clothes in the dryer.

Best wishes!

Ben and Meredith McDaniel said...

loved the article and ALL the pictures sweet friend. praying for you guys daily. i've heard his skin is precious..like fine china. i can't wait to see you all! love, meredith, ben, & grady

Anonymous said...

You guys are such a beautiful family and with all you've overcome, I believe your family can get through ANYTHING! I love the picture of Matt looking at you. He loves you so much!
Linmarie

Heather said...

Praying daily for you guys...and especially praying for poop now! The pictures were so touching. Jonah is beautiful!

jennifer said...

we had such little information ourselves about eb when my brother and i were kids that all this is pretty exciting to witness. thanks for letting other eb families like ours experience bits of this with you. continued prayers and a special thought for gabe this week.

Beth said...

What a great article and what lovely pictures of your family!!

Looking at all of the pictures that show a small fraction of what the dressing changes actually are, is simply amazing! It is one thing to hear what the process entails, to pray for easy and pain free dressing changes, and it is completely different to see pictures of the process. The love and patience you have is just amazing!!

Praying for sweet Jonah as always!

Jenny Hintze said...

Oh, that last picture is funny. It looks like you're saying "Whacha talking 'bout, Willis?"

You guys look like you're doing amazingly well with him. He is such a cutie pie. Congratulations on being the parents of such a rare jewel of a boy.

M J said...

lol You look beautiful in all the pictures! I know you worried about your "fat face" (certainly your words and not mine!) but EVERYONE has a fuller face when they've just had a baby! ;)

Twin Mommy said...

Beautiful pictures & what a great article. Jonah is just the sweetest!

Kathy said...

The article is very good and so glad the pictures (all of them!) were included.

You two are amazing parents! Keep up the great work and we all will be praying for your very precious son. He is very, very handsome!

Erin said...

Oh, you look beautiful in the pictures! Wonderful article!

Tracy said...

That is a great article, and great insight into your lives with an EB baby. Picture #11 broke my heart though :( You two are champs for sure!!

Kelli said...

A great article. Beautiful pictures of all of you!!!

Sue Ann said...

Yeah for poop prayers! A little trick to keep in mind that adds some calories for Jonah, (check with your doctor)we added a little light corn syrup to the baby formula and that cut down on the constipation. My sister-in-law used mineral oil instead. My kids turned out better :) ha!! Love you guys. Remember the offer!