Tuesday, April 14, 2009

jonah - tuesday, april 14th

Jonah's scope went great, and his airway looks clear. The only thing the ENT saw was some very slight inflammation in his vocal cords, and he says that is very common - that the slightest irritation could cause that.

He's breathing great, and there were no signs of blistering or ulcerations. He's moving air well, and his airway looks very open and clear. He said that you would really notice a problem when Jonah is ticked off - as far as not moving air well, constriction etc - and believe me, folks, he was pretty TICKED OFF. But he held still for the most part, it was quick, and I don't think it was any more intrusive than the NG tube Jonah had in and out and in and out when he was in the NICU.

So... as hesitant as I am to say it... for now, things look great and stable and as normal as possible. Jonah took 120 cc at his 3am feeding and 85 cc before we went down for his scope. That's up A LOT from what he's been eating.

We're relieved and encouraged. Praise God for protecting Jonah's airway. Another prayer answered. I'm continuing to pray that airway issues are NOT something Jonah has to deal with. He's got enough junk on his very little plate as it is. We'll still have to watch his breathing very carefully, but for now, things look good.

We'll be heading home as soon as possible, but at the speed things have been moving around here lately, that could be a while.

Thank you so much for praying and loving on us. Now if someone could just figure out my Aquaphor stain problems... you know now that we have the breathing issue resolved. :)

98 comments:

A simple being said...

im a lurker, and a prayer warrior for jonah but i thought id just suggest that if you soak his clothes in a sink or tub of warm/hot water with a dishwasher packet dissolved it will remove just about anything then of course wash them well as im sure the detergent could harm his skin but it got us through som horrible reflux stains.

jcclifton said...

So happy for the good report - still praying in North Florida!

SLewens said...

What wonderful news!! - keeping up the prayers in Wisconsin!

michelle said...

So glad everything looks good! Hope y'all get to get settled in back at home soon. Still praying for Jonah!

Our family page said...

You are PRECIOUS!! I am so happy for all of you! I was praying and I must say, I looked in the mirror today and, well... rumpus is a tiny bit smaller! ;o) So glad He answered our prayers and everything went well! As far as your stains go, good luck! We still have stains from our daughter's use of it when she was burned almost a year ago. Sorry! The one thing we did find helpful on SOME of them was to put baking soda on them and let it sit for a day, (usually while in the laundry pile) then wash as normal and little by little that did take them out. Hope this helps! Love to you all! Missy in Mexico

Stephanie said...

Praise the Lord that the scope went well. It's wonderful to have some good news.

I don't know if you have ever read the book "Talking Dirty with the Queen of Clean", but she has tips for all kinds of natural cleaning/stain removal tips. I keep her book in the kitchen. As far as stain removal, since Aquaphor is greasy, try putting some baby powder or baking soda on the stains. Rub it in and let it sit for 15 to 30 minutes to allow it to absorb and draw the grease out of the fabric. Brush the powder off. If it looks like you can absorb more grease do it all over again. If it still won't come out, sprinkle it with cornstarch, cover with an old rag and use a hot iron. This will draw the grease into the rag and off baby Jonah's precious little clothes. I hope that helps. Let us know!

Mike and Molly Spivey said...

praise God!!!!

nancygrayce said...

Oh, praise our good Lord! So glad everything went well. Continuing to pray in Northwest Florida.

Rochel said...

My mother-in-law claims degreaser gets EVERYTHING out...and I gotta be honest...it has worked on everything I've ever tried to get out :) SO glad Jonah is doing better.

Lucy and Ethel said...

Great news!

When you're able to think about the stains, it's a sign that all is, as you say, as normal as possible. And that's WONDERFUL!!!

Lucy

Jenilee said...

praise God!

Katie said...

Ok, for the Aquaphor stain...put a little bit of dish soap on the stain and rub it together. Then wash in VERY HOT water. That should work, or at least reduce the stain.

Katie

Kristie said...

Hi Patrice.

I am praying for you all, usually in Texas, but right now I'm in Arizona. I'm not very good with stains but I have read the book, Talking Dirty with the Queen of Clean and I think the baking soda just might work.
I follow your blog daily and I pray for little Jonah daily. He's such a beautiful baby.

Anonymous said...

I just stumble across your blog as a button on one of the other blogs I read. I read many posts before i noticed your story in the sidebar.

When I realised what your poor Jonah is up against it both broke my heart and hit close to home. One of my brothers best friends has EB. He is 25 and lives life to the fullest, however I must admit sometimes it is heartbreaking to see him struggle on a daily basis.

God knows you can do it, and that you have what it takes. Jonah is bless, and so are you!

Janel Waters said...

Praise the Lord! I have been sick with worry and praying constantly for your whole family!

Thank you so much for the update!

kristisweeney said...

I've been lurking for a while, and praying for your family. In answer to the Aquaphor stains, cornstarch works well to get out greasy stains. Just put a little pile on there when the stain is as fresh as possible and it will soak up much of the grease and cornstarch is generally not harmful to skin. I'm so glad the scope went well.

kathunt said...

I'm so glad that Jonah's scope went great! Praise God & all the wonderful things He does. I will continue to keep you guys in my prayers.
Also, the pictures from a few posts ago are so sweet! Johan has the most beautiful blue eyes.
Have a good day.

Jenny said...

PRAISE GOD!!! We will continue to pray in Kansas!

Nancy said...

YAY! We've been praying for you guys and I was happy to read this post this morning.

As for aquaphor stains... we let Noah's stuff soak in the washer for a half hour in the water with the detergent (we use 7th generation) and hydrogen peroxide. It works great with formula & other baby stains, not sure how it will do with Aquaphor.

Michele said...

I am so happy the scope went well. The speech pathologist in me is relieved the airway looks good. The mommy in me is just happy he's ok.

Angie Davis said...

what an answer to prayer!

committed to pray for the long haul~
angie

Kristy said...

So glad the scope went well.

As far as the Aquaphor stains....the best thing I have found is Shout spray FOR GREASY STAINS (it has to be that specific formula). It works great, although sometimes I have to use it twice. It has even worked on clothes that have been through the dryer. Which is great, 'cause you usually can't see those greasy stains until the clothes are dried.

The baking soda, etc. suggestions and will probably work great if you attack the aquaphor right away, but I never seemed to see the stains until the clothes had been washed and dried. :0

Kristy
Mom to Carson (king of Aquaphor), 6 years old, EBS

Erin Hingley said...

PRAISE GOD! I have been praying over sweet Jonah all night/morning. Thank you, Jesus that his precious airway is fine! Horray for this victory!

Love,
Erin in va
youmeandwipee.blogspot.com

dg darling said...

So glad things went well! I have been praying almost constantly since I read your last post. I hope sweet Jonah can enjoy some peaceful at home time for a while now. You are a wonderful mother and he is so lucky to have you!

April said...

Oh Patrice! That's wonderful news! I couldn't sleep last night because little Jonah was so heavy on my heart. My praying and other prayers, definitely worked! I will continue to pray that he doesn't develop anymore problems down the road and also for a miracle! Also, I know that Melanie (MelH)mentioned to you on a comment yesterday that her and her sons are going to walk for Jonah in the March of Dimes in Northwest Arkansas on Sat. I may participate as well. Thank you for sharing your journey with us. I feel honored to be a part of this journey and to be able to pray for him, you and your husband.

Jenn said...

So relieved!!!

Penny said...

I think that legion of angels did their job! praying that they stay around and help to heal Jonah day by day.

Praying fervently here for Jonah and all his caretakers and family.

No ideas on the aquaphor I don't have any experience with it, but have you tried simple green or oxy-clean?

Anonymous said...

Matt and Patrice, I praise God for the positive report on Jonah. Why are we surprised when God has already answered so many prayers on his behalf? And I have confidence in our God, that He will be faithful to answer our prayers. That's a strong little one you have! How blessed he is to have you as his parents.
Sandy

Meghan said...

Hey Patrice! I don't comment often, but I read every post and Michael and I have been praying for Jonah, you, and Matt from the beginning. Sooooo glad to hear the good report. We will continue praying! Thanks for sharing your sisters with me two weekends ago. We had a blast but let me tell you, they were both hesitant about leaving since it was the first weekend that Jonah was going to be home. :)

Leanne said...

YAY, Baby Jonah!!!! Praise our Father for his mercy and provision! I'm SO THRILLED that the scope went so well and am excited that the discussion of the day is Aquaphor stains!

My recommendations for greasy stains are dish soap (I think Dawn works best) and baking soda.

Prayers from GA,
Leanne

Jane said...

Praise the Lord, called Leigh and gave her the update. Got to get back to Seth. Keep the faith sweet Patrice.

Kelsey said...

I woke up this morning and the first thing I had to do was find out how Jonah's scope went. It's amazing how much I care (like many others) about someone they don't even know. Wahoo! I am so glad that you recieved good news today. I am hoping that good news keep coming your way!

Channe said...

yeay - we are rejoicing with you!!

Amber Schmidt said...

His mercies are new every morning! Praise God!!! SO glad to hear that the scope looks good and that Jonah is eating better!

lainielou said...

If Aquaphor is greasy, try dish detergent. A few drops before washing and VOILA! I swear by it on grease stains, even after a round in the dryer.

Cathy said...

Praising God for the good news!

Danielle @ Living Out Loud said...

Praise the Lord! I'm so relieved to hear this good news... and even more relieved FOR YOU! I know how scared you must have been and knowing that he is breathing fine HAS to make you feel so much better!

And I just wanted to comment on your previous post about the statistics for EB babies. Remember that Jonah is not 46%... he is already a miracle and you have told us that you have witnessed God's healing right before your very eyes. Hold fast to the knowledge that God CAN heal him and that 54% of JEB babies to NOT have those dire statistics! Jonah WILL be in the 54%... not the 46%! I admire you so much. I personally struggle terribly with fear and worry, so although I don't have a baby with EB, I know what it feels like to be terribly afraid. You give me strength in my own struggles.

Enjoy the day with Jonah today! Just enjoy him in all of his baby-ness! Trust me, it goes so fast!

Praising God for your good news today and praying for continued health and healing for Jonah... and peace of mind for YOU!

Anonymous said...

That is such great news. I'm glad things look good. AJ has his scope in two weeks - sometimes it's great and other times not so good - EB never seems to stay the same but you get used to it (sort of) Have a great day - go home and enjoy that sweet baby.

Barbara and AJ (RDEB 16 months)

Susan said...

Yay! Way to go Jonah! (And doctors!) Good is so good! Have you tried Grease Lightning? It gets just about anything out of clothes (even though its intended use, isn't necessarily clothes)..try it out! Have a great Tuesday with your boys!

Megan said...

Aquaphor stains? try wd-40. Works wonders on oil stains!! :)
Thrilled Jonah is doing great!!!

Alyson said...

That is such great news!!!!

I bet you guys can sleep a lot easier at night now!

I'm continuing to pray for little Mr. Jonah!

Alyson

p.s. I have a whole sealed tub of Eucerin Cream that I have never used,....My sons have eczema and their allergist gives us tubs of this stuff at every visit....I will NEVER get to use them all.....and I have ONE tub that is still SEALED... If you want it please let me know.....I'll send it out ASAP!

The Mind of a Mom said...

Oh my gosh what wonderful news!!
Patrice I don't mean to be nosy but I would like to better understand your little guy's struggles. Can these blisters be on the inside of his mouth, throat, ears etc.. as well as the outside?

I did pray for Jonah and added his name to our prayer book at church so now he has a bunch of Canadian's sending prayers his way.
Congrads on the good news!

Heather said...

Praise God for simplicity! Praying that he never has to deal with airway issues. He is a beautiful baby! Praying for you guys daily here in Charleston, SC.

Stacey said...

Praise GOD!! I am so glad the scope went well and I hope you can rest assured that things are good in that department now.

Have a great day and know that we are continuing to pray for your precious family.

<><

Craig said...

Thanks be to God! You have a bunch of people praying up here at Andrew & Kim's church in New York. This is wonderful news.

Happiness is Here! said...

What a blessing! I thought about your family all night! We will continue to pray that the recovery goes well and he is eatting good!

The Hartung Family

Lauren said...

Praise God! So happy for you guys and so relieved. I was praying for him this morning and just hoping everything would come out alright.

Anonymous said...

I have been reading your blog since Jonah was born, that boy would melt anyone's heart. He has the prettiest blue eyes and seems like such a sweetheart. I am praying for him and your family. You can try Dawn dish detergent for the stains, should work or get the majority of them out. In him, Dawn

Toni :O) said...

Praise God...reall good news! Hang in there and enjoy that sweet boy of yours!

Anonymous said...

Go Jonah...GO GO..Go Jonah GO GO!!! That's great news and what exactly is the aquaphor issue?? I am a Jonah stalker so I read every post and don't remember that one...anyway..i'll just pray for the "aquaphor problem"...LOL ;)

Janet said...

Patrice -- I'm so happy to read that the scope went well. Maybe that means that things will begin to be more positive. We'll keep hoping and praying!

Janet

Nora Lee said...

Prayers answered!! So happy for the good report. We all will continue to pray for healing and comfort for Jonah and his mommy and daddy.

Tracy said...

SO GLAD to hear that his scoping had great results!!! I still continue to pray for your family and Jonah and check in everyday for reports :)
For greasy stains, the only thing I use every single time is regular dawn dish soap. I just put it on the stain right before I throw it in the washer and out it comes! Hope that helps you!

Beth said...

Praising Jesus that the scope went well and that you can now focus on simplier things, like stains!! :)

BOWquet said...

Jonah is such a beautiful baby boy! I love his blue eyes!!! :)

Jenny said...

That is great!

If you are talking about the grease stains from the aquaphor, use Dawn dish soap to treat them.

Scrub regular Dawn into the stain with a plastic bristle brush and also spray with Shout. Then launder as usual.

It may take a few times, but Dawn always gets oily dark stains out of our clothes.

Anonymous said...

Great news! Try looking in to the Neocate formula. He probably has some reflux going on! Praying for you!
love,
Jennifer in Huntington beach, CA

Anonymous said...

Yay! That's awesome!

Melissa said...

Praise God for good news for Jonah!

Aquaphor stains issue: if you haven't tried it yet, OxyClean is wonderful for most stains I've encountered with my boys, but I can't testify personally about using it with Aquaphor. I soak the stained item for several hours in small empty sherbet bucket of hot water with a scoop of OxyClean. Then I dump the entire bucket into the washer along with laundry detergent. By the way, el-cheapo Sun Oxygen Cleaner has worked just as well for us, but if it doesn't work for you, just upgrade to the OxyClean.

Standing steadfast in prayer ...

Peggi said...

Hi. Not sure what an Aquaphor stain looks like, but am assuming it is a greasy stain. I use Dawn dishwashing soap on greasy stains. I put the spout of the bottle directly on the and squeeze out a little soap to cover the spot.(I don't like to end up with too much soap all over) I roll up the clothing and throw it in the dirty laundry. When I wash, the stain comes out. It even works for stains that have gone through the washer and dryer, I just treat the spot and let it set. It doesn't take a lot of soap to do the trick. Hope it works.

So happy to hear about Jonah's airway. I was praying everytime I thought of him. Sweet baby.

Anonymous said...

Be careful with Oxyclean. I soaked my one half of my daughters outfit, the part I soaked ended up fading quite a bit. If it had been a one piece it wouldn't have been a problem, but the shirt and shorts no longer matched because one was darker than the other.

precious 3 said...

Praise God the scope went ok! We will keep on praying.

For the stains, try Goop. It is a hand cleaner, but I have used it many years for laundry. It's worked on grease, chapstick (that somehow made it into the dryer), and vaseline. I usually wash it with Goop, then wash it again with just my normal detergent.

You have a lot of good suggestions! I may have to try some out, since we currently are out of Goop.

Nathalie from Toulouse said...

that's wonderful news! still praying from France.

Anonymous said...

That's wonderful news!! THanks for keeping us posted. We will continue to pray for clear airway. (sorry that rhymed...) ANyway, hang in there. You are doing great! I think you needed some good news, and maybe that's why God led you down that path for the scope. HE is in control and knows every single hair and exactly how many globs of Aquafor are on Jonah's sweet self at any given moment in time! =)
praying still,
daisy (alabama)

Anonymous said...

Continually praying for Jonah...

Regarding the stain:
rub in powder (baby powder, after-bath powder, etc) to the stain and let it sit overnight. The next day, shake out the powder and you'll see where the spot/stain was. Stick in the wash - and WA-LA! - stain be gone!

Michelle in Va said...

Praise God for such wonderful news. Now, enjoy that sweet baby boy. Praying each and everyday for all of you. God is so amazing and the ultimate healer. We have all witnessed such a miracle with your little tough guy. I know your story has so touched my heart. I pray from here on out it will be nothing but sunshine. Enjoy that baby boy, they grow so fast. Much love to you all!! God is so good!!!

Anonymous said...

Stains- try cleaning with Murphy's oil soap on spots by hand. Rinse well and then wash as normal. It's good for grease stains of various kinds.

Kim M said...

Yeah!!! Praise God for good news! Way to go Jonah - you must have studied hard for that test to have such great results! :-)

Stephanie said...

PRAISE GOD!!!!!!!!
Thank you so much for letting us know!
Go, baby, GO!! Into all the world...

Sleep well tonight! (or at least for an hour!! ;)

Kat and Crew said...

PRAISE GOD!!

For greasy things I have heard to use baby powder or baking soda. They suggest letting it sit for a day or so though. Good luck and GOD BLESS YOU ALL!!

Claire said...

Praise God and way to go Jonah!

Cxx

Anonymous said...

Aww I'm so glad that the scope went well! I am glad that his airway is blister free. It was good to see you guys yesterday, and most of all, it was good to get some Jonah loving! I miss it!

Sabrina

Laura A said...

Hi Patrice-

Praise God that things went so well! Will pray for continued good feedings and peace at dressing change time.

As for the Aquaphor, I don't have anything new from the other posts, except for maybe some humor. One of my favorite movies is "My Big Fat Greek Wedding" - the father in the movie insists EVERYTHING can be solved with Windex. Who knows -it may work! :+)

Love,
Laura in TX

Jenny said...

I'm so glad to hear that Jonah's scope went well. I'll keep praying for you guys.

Anonymous said...

Glad to hear that Jonah's airway is clear, his breathing has improved, and he is eating better. I am sure you and Matt are relieved hearing Jonah's scope results. Praying Jonah continues to get eat and grow. He is such a sweet baby!

Gail
Annapolis, MD

Anonymous said...

What a mighty God we serve
What a mighty we serve
Angels bow before Him
Heaven and earth adore Him
What a mighty God we serve

Alex(andra) said...

Praise God! So happy the scope went well! Still praying here in Kansas!

Erin said...

Oh, so happy to hear that his airway was clear! This is wonderful news! Glad that you are going home. Will continue to hold your family up in prayer

Wanda Wilkinson said...

I keep trying to come up with the words to say how awesome, wonderful, glorious our God is. This morning I was praying for the legion of angels to hold Jonah & surround him with loving & gently arms. God did more than that, He showed all of us that He is in command & He knew that the 3 of you needed some good news, & boy did He come allow you to have the best news.

I pray frequently for Jonah, you & Matt, the doctors & all who are involved in Jonah's care. I truly believe that if we continue being prayer warriors for Jonah that God is going to heal him. What a testimony Jonah will have. Jonah will have the proof, that God is healing him. I went back & looked at the pictures from the beginning until now, what MIRACLES God has already performed.

Patrice & Matt, I know you were picked by God to be Jonah's mom & day, not everyone would have the patience & love to do what you do & of course Gabe is sitting at God's right hand, intervening one on one for his baby brother & mom & dad.

Thank you for sharing your personal lives, trials, happiness & heartaches with all of us. You have been such an inspiration for me & many, many others. I feel that I know you personally, I feel closer to you than I do to some of my family.

I know God will continue to bless the 3 of you. Of course there are going to be some trying times, but then you will have more to praise God for when Jonah is healed.

I agree with the others, Jonah is beautiful, you can see the love & happiness in his your face.

My prayers will never cease.

Hugs & kisses (xoxoxoxoxoxo) Wanda Durham NC

Tracey said...

Dawn dishwashing and perioxide will remove any stain from anything! Just mix a little in a cereal bowl like a cap full of perioxide with a squirt of dawn (sorry we never meaure) and rub it on the spot it should come out! Good luck my family has used this for years and it always works like a charm!

SavedbyGrace said...

As I am typing this, I am beginning to get a little teary-eyed. Jonah is such a blessing. I am so happy to read that he's doing well today. May his health continue to improve. Keeping your family in my thoughts and prayers - Christina

Brandi Jordan said...

PRAISE THE LORD! Still praying for you and sweet Jonah.

Cindy said...

Praise Jesus that all went well and Jonah's airways looked good. I continue to keep all of you in my prayers.
Cindy in NC

Molly said...

I think you have such a wonderful attitude about all of this. It says a lot about you as parents. I don't know you but I am so proud of your entire family! Jonah is in my heart and remains in my prayers.

Erica said...

It's been a few days since I checked on you all and I see I missed the scary stuff! I'm glad to hear Jonah's airways are nice and clear, Amen! Hope you get to go back home soon (if you and Jonah are ready)!

Anonymous said...

I have spent the last hour reading your blog. I don't think there has been one minute that I haven't had goose bumps. What an amazing story.
One minute I want to wrap my arms around you and give you a big hug, the next minute a high five. You are amazing people! Amazing parents. And what an awesome God we have!
Jonah is a miracle! I pray for patience for you both and for him. I pray for him to continue with good progress. I pray for the energy you need daily! I pray for him to be pain free!
I will continue to follow his blog and pray for you all daily!

Kelli said...

Praise be to God that the scope went well. Praying in South Carolina. FYI We had lunch with some young guys from the Raleigh area this past Sunday. I was discussing Jonah and EB. One of the boys said, "Oh you mean baby Jonah? We pray for him at our church." Now how awesome is that!!!

Anonymous said...

Still praising God for all that has been done and that will be one in your lives.

Like you need one more thing to do...A speech pathologist can help with Jonah's feeding, making sure that his communication milestones are being hit and can also look at his upper airway issues. The good news is that until he's 3, the services can be provided in your home on your schedule and by whomever you choose.

And your choice may be to do nothing right now.

Sus said...

Praise God! I prayed and cried and prayed again this morning. I felt your fear and worry and had myself a little cry for Jonah. Praise be to God the Father for answering and providing---He always does...on His time and in His way! For tonight, celebrate the news...relish the moment...and snuggle that sweet baby!

The Price Family said...

Williams Family--

Our fifth grade class in South Korea lifts you guys up in prayer every day. We sent some extra prayers up today for Jonah's scope. We were so grateful that things appear to have come back well. We will continue to pray for him and you guys.

We put your Pray for Jonah button on our blog and so the kids have access to your blog and enjoy keeping up with you guys themselves and not just through me.

God Bless and we will continue to pray!

5th Graders at Taejon Christian International School in South Korea

Ann said...

I have to say that Jonah is the SwEeTeSt little fella EVER! That small soft little face just makes me smile...what a trooper!

SO glad to hear your good news! Will continue to keep you in my daily thoughts and prayers- God IS good!

God bless!
(((hugs)))
Ann in SC

Kristie said...

TRy some baking soda......first wet the article of clothing then use a tooth brush and make a paste with the baking soda.

Kristie

Valerie said...

That is great news! I'll keep praying for Jonah and more good news :)

Anonymous said...

YAY GOD for the scope, and dishwashing soap for the stains! :)

Joy in Denver said...

Thank You, Jesus, for watching over Jonah and for giving his mama peace and joy today.

Patrice, I am so happy for all this good news. :)

Katherine said...

M&P, What an answer to prayer! I've been out of it for a couple of days (stomach bug) and am just now getting back to all the "news." I've been praying and praying, and this is wonderful. I know some of your worries are lessened, and I can't wait til you're home again! Love you all to pieces ...

Karen said...

The Dawn dishwashing liquid is what is used to remove oil from animals when there has been an oil spill. It is gentle and will work. I rub it in the stain and let my clothes soak in the sink for an hour or so then wash as usual.

We continue in prayer for your family!

Anonymous said...

can i suggest pouring a liter of coca cola in your washer with your laundry soap n clothes