Friday, April 17, 2009

another day another post

***UPDATE***
The Zout/Oxiclean combo was a no-go. But no worries. At least I ran everything through the dryer again and set those stains EVEN deeper. Grrrr...
*****************************************************************

I'm happy it's Friday. Not that my weekend days are really different from my weekday days, but Matt's around more, and that makes me happy. He has used sooo much vacation time that after next Wednesday (when he takes off for Gabe's one year birthday) and our beach trip we had already planned for this summer (assuming we'll still get to go), he'll only have 2.5 days of vacation left... which is actually great when you think about what he's already had to take off. His work has a very generous PTO policy. He'll just have to stay healthy.

I put on make-up on today, brushed my teeth, and blew-dried blow-dried dried my hair with a hair dryer -thankyouverymuch.


Not a whole lot to report today. It's 72 degrees and sunny, and Jonah and I spent some time out on the back deck. I'm sure we'll be out there again. It gives me the semblance of getting out of the house. It was all going great until he projectile spit up all over me, the chair and the deck. Sweet boy missed his bandages though, so I was very thankful for that.

Think we may have gotten some real smiles today... still too hard to tell.

I'm currently washing my Aquaphor stained clothes. I'm trying a concoction of Oxiclean powder wetted with Zout spray and rubbed in. I'm washing them in warm water (YIKES). We'll see how it goes. If it takes the color out, it's not really a big deal since I'm not wearing them out of the house as it is anyway. Thanks for being considerate of Jonah's clothes, but HE doesn't wear clothes. It's OUR clothes that have grease stains all over them. Matt and I are developing Aquaphor and Non-Aquaphor sides of the closet. If this doesn't work, I'm eager (I mean not exactly eager, but you know what I'm saying) to try the other options you guys recommended.

Oh yeah, I forgot to mention when I was writing about the crazy, incoherent breast milk labels - I also tried to pour the milk from the bottle to the storage bag, totally missed, spilled milk all over myself and the bed, and had to do a middle-of-the-night sheet change. Just what I want to be doing at 3am. Good grief.

They say the newspaper story is on track to run on Monday. I'll let you know if it changes.

Jonah's still eating well, and we were able to skip the midnight feeding last night. It was a good move except I accidentally turned off the alarm clock at 3am. So at 3:30 when he woke up, it was NOT pretty. Homeboy woke up with a vengeance. And as much as I wish I could heat up milk in 10 seconds, it didn't happen. VERY ugly.

We'll be celebrating Gabe's one year birthday on Wednesday. I'd like to do some special things, but am having a hard time coming up with exactly the right thing. It's hard for anything to feel right when he's not here to celebrate with us. I think we'll probably take Jonah and have a picnic out at his spot if it's nice weather. Other than that, I'm not sure... it's such a bittersweet day - mourning the incredible loss, celebrating the day we finally got to see his beautiful face. I miss him every minute of every day - even more now that Jonah is at home, and we're getting to do so many baby things with him. I wish he was here with us but am thankful he rests in the arms of my Savior. I can't believe it's almost been a year.

Please be in prayer for us as we approach the day. I'm not sure yet how we will handle it, but I've teared up several times the last few days just thinking about it. Our hearts are still very much broken.

Also, please be in prayer for Jonah. He's got some new blisters on his face, the back of his head, his shoulder, and his belly. The ones on his belly and shoulder keep refilling and stretching out. He's going to have huge raw spots by the time they're done growing for good. The ones on the back of his head hurt him a lot and make it very hard to pick him up. And the ones on his face just make me sad. His face has looked so great for so long... my hope for him has been that his face would stay clear - superficial though it may sound. It would just make his life easier. I need to not care what people will think and say, but I just know how cruel the world can be. I want them to see what I see. I want them to see Jonah.

84 comments:

Anonymous said...

I'm glad it's Friday too!! I hope you guys have a good weekend and I will pray for strength for you guys. Jonah is so blessed.
LinMarie in Florida

Katherine said...

M&P, Even as we celebrated Jake's birthday yesterday, my happiness was tempered by the fact that Gabe wasn't here to celebrate with us on Earth. I know that next week will be exceedingly difficult, but I am so glad you have Jonah to hold in your arms and comfort you. We love you so much!

Anonymous said...

My husband, in his 5 a.m. early-morning haze, has poured milk into a Playtex nurser bottle sans liner - milk spilled all over the counter... Oh, and when I had a PIS, it would tell me "leavethemoneyleavethemoneyleavethemoney". Don't worry too much about how people will react to Jonah, I'd be surprised if they saw anything beyond that gorgeous little face ;)

Sonja said...

I haven't read over the aquaphor stain removal tips post, but I was wondering what it is made of. Is it greasy? I have extremely good success with a tip my mom gave me years ago, when I was first wondering why my laundry didn't look as nice as hers.

For really white whites and stain free clean colours try Ultra Tide powder in a pail of lukewarm water. (I often use the washer itself--with four kids we have a lot to soak!). Soak the clothes overnight up to 24 hours--the time is essential because the Tide needs the time for the enzymes to break down grease and stains. Then wash the clothes as you would regularly. I have been AMAZED at how much this has changed my laundry stains. I've even bought clothes from second hand stores with formula/food stains and MANY of them come out after one or two soaks.

Just something you could try. But I don't know what Aquafor is made of...

It is nice to think of you enjoying the outdoors with Jonah after you have had to spend so much time inside. Thinking of you all!

Anonymous said...

i wish you the guys the best and you all will be in my prayers. my name is jennifer and i believe i used to cheer with you years ago. i have been keeping up with your blog since i read about jonah in the newspaper. you have two beautiful little boys. just wanted to let you know that you guys will always be in my prayers.

Jill said...

We see what you see. One of God's Miracles. :)

Amy B said...

And thankfully we serve a God who knows the desires of our hearts, even when they are bordering on superficial! I think every mom wants the world to see the very best of their beautiful baby & there is nothing wrong with that. And, thanks to your openness and honesty in your blog writings, we have all had the chance to see your Jonah, and see your heart as well. You will be in my prayers as you approach precious Gabe's 1 year in a combination of sadness & celebration. And we'll continue to beseech our miracle-working Father for healing in your strong Jonah.
Blessings & Prayers,
Amy in WA

Erin Hingley said...

Dear Patrice, I see what you see in Jonah and he is so beautiful! I'll be praying for you as Wednesday approaches. May God bless you with His peace and healing.

Love always,
Erin in va
youmeandwipee.blogspot.com

Sandy said...

So glad you and Jonah had some time outside on this beautiful day God has granted us. Oh precious Lord, God Almighty, our Ultimate Physician, our Prince of Peace, Abba, Father - I pray for our beloved Jonah that the blisters on his face be healed and removed in the name of Jesus, I pray that your healing hand is upon Jonah, that your hand is upon his mommy and daddy. May they experience peace, joy and happiness on this beautiful day. May your calm spirit dwell within them as they face the coming days.
In Jesus Name
Amen

Claire said...

I see a beautiful, loved, inspirational little boy. And his awesome parents.

I'll keep you all in prayer.

Cxx

This IS The Fun Part! said...

Dear Patrice & Matt,

I know how you feel about the way some people can be concerning how Jonah may look sometimes. But maybe you can think about it this way -

The people that matter don't care - the people that care don't matter!

Just something MY Grandmother told me a very long time ago.

Grannie

Erin said...

Oh, he is a beautiful baby! I will pray that the blisters on his face go away you are not being superficial at all. You are such a great Mom!

j3k said...

One thing you might want to try for the grease stains is Dawn dishwashing soap. I know it sounds crazy but I use it on all our grease stained clothes and it always works. Don't use the one with bleach just plain old dawn! Best of luck...
Hearts and Hugs
Marie

Anonymous said...

Yay for Friday :-) Praying for sunny, warm weather for you this weekend so you all can spend some time outside. Yay for Jonah eating better, skipping the midnight feeding, and getting to sleep a bit more. Praying the existing blisters heal and no new ones. Jonah is a beautiful, sweet little boy.

Gail
Annapolis, MD

sstoga said...

Hi there - there are some bottle liners that you can pump directly into, which is a big time-saver, esp. at 3 a.m.! I think Gerber makes some, as does Lansinoh. You just have to make sure you have the compatible screw-top things for the pump. Take a field trip to Target (yay, Target!) and check it out!

I've never been a very spiritual or especially religious person, but I'm getting there through following your journey of faith - thank you for that. I also have an infant and when i'm up with her in the middle of the night, always say a prayer for Jonah and his family! :)

EHW said...

Hi Patrice (and Matt & Jonah, too)...

I've been following your blog faithfully since sweet Jonah was about 2 days old! I have also faithfully been in prayer for your sweet family!!! I so enjoy reading your blog postings and getting to see your BEAUTIFUL family. As silly as it sounds, I almost feel like I know you, like you are a friend! I'm sure others feel the same way - so just know you've not only got lots of prayer warriors out there, but also a great deal of friends!!!

Your postings about your pumping experiences make me laugh. My pump has never "spoken" to me, but I'll keep listening to see if it wants to tell me anything!

After nursing and pumping for my 3rd baby, here are a few tips that I wish I had known MANY years ago when I had my 1st child...

*** I pump directly into "Breastmilk Storage Bags" made by Lansinoh (TARGET, and this brand seems to be the least expensive)... I keep a roll of scotch tape in my pump bag and pull off a strip about 4" long and just tape each bag to each breast shield so the milk dribbles into the bag instead of screwing on a bottle to the breast shield (this elimates the risk of spilling the LIQUID GOLD as you pour and saves you having to wash/sterilize bottles just for pumping). These bags seem to freeze well and thaw out pretty easily in warm water.

*** I use something called: "Easy Expressions Hands-Free Bustier"... This is THE BEST $35.00 I have EVER spent!!! It is a little halter bra with a zipper in the front... 2 holes in the right places to hold the breast shields close to your body... check out:

www.easyexpressionproducts.com

I LOVE, LOVE, LOVE, LOVE this product as it allows me to type, write, and even drive my car (I pump while I work doing Home Health Physical Therapy - not while I'm with patients, but when I am driving in between patients, ha)! I bought mine at a local medical supply store that sells/rents breast pumps and supplies, but you can order online as I have NOT seen this at Target, yet!

And, I have already been praying for you as you REJOICE in April for the birth of your first son, Gorgeous Gabe!!! I pray that the joy in your heart will outweigh the sadness!

Much Love and Many Prayers from Elaine in Lubbock, Texas

Anonymous said...

So glad you got all doddled up to go "out" and enjoy the sunshine. You sound a bit like me when my wee ones were wee! Getting out is still an experience and they are all in school now! We are still praying for you, Jonah and Matt. I will try extra hard on Gabe's birthday. I know it will be so hard on you. I am glad that you are having some better days. I hope we start on a "trend'! Jennifer in Southeast, NC

jennifer said...

we'll be thinking of you all come gabe's birthday. and with jonah and those pesky blisters. take heart. i was once shocked looking back through some old high school pictures in realizing the hottest guy in our class actually had some pretty bad acne. as long as jonah remembers how loved he is and feels deep down he is one handsome boy, his light will outshine any blister, bandage or teen-age blemish. and as grannie said, that's all the people who matter will see. now if only clothes had a little God-given light that could cast shadows on aquafor and projectile spit-up stains...

Tiffany said...

Hi i just read that you are trying to get a grease/oil stain out and my best friend's dad has a chemical company. If you go to shippcleaningsystems.com (company name is Shipp Chemical) they have a chemical called Citro that I absolutely love. If my kids get any kind of food grease on any clothes I just put citro straight on the stain with a paper towel or rag and then wash it and it ALWAYS comes out. It's the best thing ever and I bet you might have good luck with it. It's worth a try at least. It smells really good too, like oranges!! If you have any trouble or questions about getting it, you can email me and I will see what I can do for you. I have been following your blog since Jonah was born and even my 5 yr. old son asks me periodically "Mama how is that baby doing with all of the blisters on him?, I bet he is getting better now, can I see some pictures of him again" He is really sweet about him and I pray for Jonah and Baby Stellan EVERY day. My 5 yr old had to have surgery on his bowel at 4 days old and we spent 11 days in the NICU so I know just a small portion of what that's like but you are doing an Amazing job with Jonah and he is precious. Let me know if you need my help with the chemical stuff. Ray0287 at bellsouth dot net ..Good Luck!

Girl Child said...

"oxyclean" ?! haha.. u just reminded me that my 5 yo asked me for that. He came in the room and was like "Ma, you HAVE to buy me Oxyclean! If my shirt gets filthy, I can clean it." Then we saw the commercial a few days later and he looked at me with a big ol smile and was like "I want that for Christmas!" haha.. i should go buy him a bucket and wrap it up! LOL I'm glad Jonah had a better day today (which means MOM had a better day today) =) I check in with you everyday. Jonah Rocks! (and you too Gabe!)

Jane said...

So glad to hear you got to go outside today, the weather will get better and you and Jonah can spend more time outside, it will be a nice break for you both. I will be thinking about you Wednesday, Gabe will always be in your heart and thoughts. Sorry about Jonah's new blisters. Don't worry about what other people think about his looks, they are just curious I am sure. He is a beautiful baby boy and you never judge a book by it's cover anyway. You and Matt are doing a great job and very dedicated. My thoughts and prayers continue to be with all of you. Hope you have a nice week-end.

Anonymous said...

ABSOLUTELY A BEAUTIFUL BABY BOY!!! He is so precious, so sweet, so innocent, so fresh from our Father in Heaven. My prayers are with you and your sweet little Jonah. His life has, and will, touch so many lives for good. How blessed you are to be his parents. MOre perfect parents for Jonah could not be found. What an angel!!

Erin Edwards said...

I am so happy that ya'll are home and doing well. We have really been thinking about you all!

As for clothing... good lucki;) I have some hints, although you should prepare yourself for clothes that are ruined quickly. As soon as they are saturated & won't come pretty clean you are going to have to toss them or hang them to dry (but then they aren't soft enough many times). There have been several fires in the ichthyosis community because of clothing saturated with aquaphor in the dryer!

This is what I do: Wash Ethan's clothes separately
Wash on hottest setting (we actually bought a front loader with sanitize option to decrease risk of skin infection & melt the lotions out)
Wash with Country Save detergent (you can get a good bulk deal on Amazon. If you want to try it first I can give you a ziploc of it. It is dye free/ frag free)

I used to boil Ethan's clothes in a big pot with the ultra dawn. It just isn't practical anymore. I wish you could have seen the water when it would cool... it would have a 1/4-1/2 in layer of aquaphor on top!

I really hope this helps... It is really frustrating.

Jenn said...

Just so you know Oxiclean makes its own spray. It comes in a blue bottle iwith a red squirter (lol.) Anyway, that is what I use for stains...oxyclean powder didn't work as well for me but this does.

Anonymous said...

I see what you see - a beautiful baby boy. My seven year old just walked by as I was looking at a photo of Jonah and she asked, "Awww, who is that baby? He's sooo cute!" and then my hubby came over and asked the same - "Who's blog is that you are reading? What a gorgeous little baby, he's so cute!" So from three strangers who you don't know - we all see the very same thing - a beautiful little baby boy. I've been reading your blog for only a few days now, but Jonah has secured a big place in my heart. I think your little one radiates love from the core of his very being - he certainly has captured my heart. Please give him a gentle cuddle from his new fans in Adelaide, South Australia.

BeckyAnne said...

I used to keep a bucket of what my kids called moms stuff for soaking clothes. It removed formula, food and even red dirt when we lived in Alabama so you might try it. You mix 1/2 c tide, 1/2 dry bleach and 1/2 dishwasher detergent in hot hot water until disolved. Then soak clothes overnight. I used to keep this in bucket in the laundry room sink so I could used a batch all week. about a 2 gal bucket. Now with no kids at home I just use dawn!

Anonymous said...

Grease removal tip: You won't be able to remove the grease unless you use boiling hot water. I would wet the spot, saturate it in Tide and rub it in real good, then stretch if over something so the water can run through it out the back side, then pour the boiling water slowly through the greasy spot. You may have to repeat it a couple times. Add more Tide, rub and repeat...Air dry the garment, and see if the grease is gone, repeat if necessary. Never dry grease stained clothes in the dryer. Good luck! If you are concerned about losing the color from doing this, choose different clothes to wear!! Also, polyester and manmade fabrics are easier to remove grease from than cotton, and are more colorfast. Hope this helps!

Jenny said...

Jonah looks great and he looks happy in your previous post! You're doing a GREAT job! We are praying for you in Kansas!!

Linz said...

I second the Easy Expressions Hands Free Bustier that Elaine suggested. It is absolutely fabulous! I probably wouldn't have pumped at work for as long as I did without this.

Praying for you in Austin, TX.

LisaL said...

Hello! Sorry to hear that Jonah has more blisters popping up, especially in spots that hurt him. I have also used Dawn for grease spots. I am always splattering myself with grease (or dropping stuff on me) and it has really worked. It has also helped with grease stains that have gone through the dryer, too (although not always). Prayer for all of you! Thanks so much for keeping us updated on Jonah everyday!! I love seeing his pictures! He is so beautiful! And you look wonderful without makeup!!

Sharon said...

THe BEST thing to get out those type of stains is good ol Dawn (dishsoap)... If there are just a few stains you can drip a little right on the stain and let it sit, or soak a few pieces of clothing in a bucket with lots of Dawn! I have even done it after a run in the dryer! Hope it works out.

Shane said...

Hugs and prayers...... For the aquaphor stains, we have had VERY good luck with Dawn Dishwashing liquid.. My son has to use aquaphor for exema, and for a while it seemed like EVERYTHING was stained. A little Dawn on a brush, and rubbed into the spot usually takes the grease out, even after it has been through the dryer. After all, "Dawn gets grease out of the way." :)

The McDaniel Five said...

This is going to sound crazy, but I have three kids and they love some greasy chicken. So, we have a lot of clothes with greasy finger prints. My husband tried GOJO that is the stuff mechanics use to clean their hands. It works wonders.

Anonymous said...

I use this stuff I buy online Chef Stain Killer. Works great on blood, grass and tomato based stains. Have not tried grease. it is a bit pricey but works great!! I just use a little bit on the stain. have to find it online.

Michele said...

When I look at Jonah's pictures, I see a beautiful face, especially those pouty lips, which are my favorite. He's going to break some hearts someday with those lips.

Candi said...

I was just reading your blog & seen that you were looking for a way to celebrate you late son's birthday... 1st I would like to say sorry for your loss :( 2nd something we did for my best friends lil girl on the anniversary of her death was we took a bunch of pink balloons, Had anyone who wanted to write something on theirs balloon with a sharpie, then filed them with helium & did a balloon release.It was really emotional but it was really nice.
Just a thought :)

Amy said...

Just a tip . . .
Do not do anything at night that you absolutely do not have to do. If that means you toss down a beach towel over a spill so you can get back to sleep, do it.
Blessings
Amy

Anonymous said...

Patrice!! :) I cannot believe you did not post a picture with your make-up on...I was so expecting one :).

I will definitely keep you in my thoughts as Wednesday approaches. Anniversary dates are very difficult, no matter how "prepared" we are.

You are right, the world can be oh so very cruel. I know you and Matt will handle these moments with grace, love, and care. The hope is that you have very few or none at all. He just has to remember that people are mean because of what is going on in THEIR world, not Jonah's...it is not about Jonah, but about the person who is being unkind. People do the wrong thing when they are having a bad day, not the one they are "attacking" or hurting.

You enjoy the sunshine with your wonderful husband and sweet, beautiful baby...oh, and that cute little furry one too.

Kimberly
WI

Susan said...

Did you ever try Greased Lightning? It works wonders, I'm telling you! :) Don't you dare worry about what "they" say about your sweet Jonah. He is a gorgeous baby inside and out regardless of how many blisters he has. They are perfectly placed by our God. :)

Anonymous said...

Try Dawn liquid dishwasher detergent... it has worked for me
just apply it and let it soak for a few minutes - then wash

the-mommy-person said...

My husband and I lost our son, stillborn with Potter's Syndrome, and his 3rd birthday is at the end of this month. I remember what his first birthday was like. I will pray for you guys, and pray that you find comfort looking at your sweet little guy and maybe he'll give you a really really real smile that day. :)

Anonymous said...

I've been praying for Jonah since I stumbled across your blog...and I'll keep praying. You're such a beautiful family.

I have a suggestion that is an alternative to Aquafor. It's made by DCL (Dermatologic Cosmetic Laboratories) and is their Multi-Remedy Ointment. It's consistency is much the same as Aquafor or Vaseline, but for whatever reason it works so much better for me and my family and I don't have a problem with stains. My dermatologist first recommended it to me for extreme dry skin. When I was pregnant I lathered in it to try to prevent stretch marks...and I mean lathered. No stains....and no stretch marks either. It comes in a large tub similar to Aquafor and you can find it on the internet. I just thought I would suggest it since it's not very widely distributed and it doesn't seem to cause the staining problem of Aquafor.

Anonymous said...

Still reading your blog and praying for you. I'm glad that you are home with your precious little one... it may have not been what you thought it would be but it sounds like you are enjoying the good with the bad.

Will be thinking of you next week as you go through the joy and pain of Gabe's birth.

Diana in GA

Anonymous said...

Jonah is beautiful....with or without boo-boos

Anonymous said...

Well, you might have to let the ones set in the dryer go to the "Aquaphor" side of the closet. If you can catch fresh ones (!) then I have a friend who swears by Greased Lightening. It is a spray in a bottle. It is NOT in the laundry aisle. In the cleaning products. My mom uses (get this!) Mr. Clean on subborn stains. I am a soaker. HOT HOT HOT water, then oxyclean and soak. Repeat! It usually gets it clean but aquaphor is not in my usual department. Of course, you can just keep "uniforms" to put on just for the aquaphor moments. I have LOVED reading some of the breast milk/pumping stories and tips. I could have used these ideas a few years ago (when the web was still an infant and blogging was unheard of!). What creative people are out there! Jennifer in Southeast, NC
Yes, I am a "stalker" and yes, this is my second comment for the day. I check all through the day as I pray for you guys!

Misplaced Country Girl said...

Maybe you could do a little baloon release for Gabe during your picnic. I'll be praying for you and your family this week. I can't imagine how hard it will be for you.

julie said...

Have you tried Simple Green? There are directions on the bottle how to dilute it for laundry. I have used this on grease stains after they have been washed and dried many times before I remembered it had the stain. I have never not had this work.

Julie

Yamma Mamma said...

My prayers are with you as you Gabe's day approaches. Angie over at Bring the Rain (http://www.audreycaroline.blogspot.com/) just had to experience the same pain - the day little Audrey would have been 1. The last couple of posts discuss how their family spent the day. My heart aches for you, yet I rejoice at the miracle of Jonah.

Penny said...

Praying for Jonah, praising God for giving you the blessing of the baby firsts........ Sorry about those stains, sounds like a great plan to have the closet in sections.
So sorry about the new blisters, faces are so important in this world we live in. I pray that everyone sees him with the love that his family does.
It is good to hear that he is starting to smile for you!

Kelly said...

I don't really know much about Aquaphor, but my mom has told me that to get grease stains out of clothes, pour baby powder on the spots (a lot of it), wad up the clothes really tight and secure it with a rubber band and let it sit for 24 hours before you wash it. She has tried it on grease spots that have already been washed and dried and it seems to work pretty well. The powder apparently absorbs the grease from the clothing fibers.

Hope it works for you!

Anonymous said...

You have a beautiful baby boy!! I think that he is perfect, and handsome I might add!! When I read your blog sometimes I think of the joy our Lord has with you and your family. I will also say this the Lord may return sooner than we think and we then will all be with our Lord Jesus in our perfect bodies!! What a beautiful thought, huh!! Many prayers for you and your sweet boys

Amy C. said...

Try using M30 on the grease stains. It's a hand cleaner that you can get from Dollar Tree or Dollar General. Put it on the stain and let it sit over night and then wash it. It works GREAT!!!!

Kelli said...

Jonah is so very blessed to have parents who love him so much and will raise him to love and serve Christ!!

Snyder Central said...

For greasy stains, try pretreating them with dishwashing soap. Like the kind you'd use to hand wash dishes in. Scrub it in a bit with an old toothbrush, let it sit for a bit to break up the grease (because that's what it's made for after all!) and then toss in the wash like normal.

I hope Jonah's blisters on his face clear up quickly. Poor guy!

Stephanie said...

I'll be praying for you in the days to come. I can't imagine what you're going through right now.

I think that those that look at Jonah and don't see just him have a much bigger issue than what they are seeing. Jonah is such an inspiration and a true miracle. I am thankful that you are sharing your journey with me and I'm able to walk along with you in a way.

I pray that you have a nice and restful weekend....with successful stain removals..fewer blisters...pain free and full of first smiles!

Anonymous said...

Hi Patrice, Matt & Jonah
I've been reading for a long time now, and just posting now. Jonah is as gorgeous as his parents - and honestly I've had to go back and re-look at pictures when you have mentioned a specific problem spot like a blister on Jonah's face - I never noticed them the first time around - Jonah's just so cute the blisters don't show if that makes sense.
Really, I wanted to post about Gabe's birthday. My sister passed away when I was young. My family always marked her birthday quietly - with a birthday cake on her birthday. We still miss her (26 years this year) but the cake was a way to celebrate the fact that we were blessed with her in the first place. It's not really a suggestion, it's more a statement of what we do :-). I think it helped us to have something small that's easy to do every year (regardless of weather) and it's also something that we would have done if she had lived, kind of a moment of normal in the not-so-normal reality of child loss.
We'll be thinking of you & are continuing to pray!

Anonymous said...

matt & Patrice, I can hardly beleive its been almost a year , that your sweet Gabe was called to the arms of his heavenly father. I am praying that next week , you will find strenght in knowing that the same heavenly father has his arms wrapped around you both, and baby Jonah. Patrice I am so glad that you and Jonah got out and enjoyed the sun shine today. I love you guys and miss you.
praying for a healing.
Love Gina

Lucy and Ethel said...

My husband and I had lost our third baby just a few months before we opened a new little business (my husband had also lost his job). Five weeks later, we faced Jeffrey's first birthday, and it was miserable... mostly because we had to work and be nice to customers when I was still fighting bawling jags.

We immediately decided to close on his first angel anniversary, which happened to fall just after the mass chaos of the tourist season. Our older son opted to go to school (one of us had to be conscientious!), but our daughter gladly took the day off with us, and we had a GREAT day. We bought tons of bulbs to plant all over where we could see them, and while many didn't make it, many pop up every spring not long before Jeffrey's birthday.

Next month, we'll be celebrating Jeffrey's 12th birthday... already.

Some ideas for doing something special for Gabe: a tiny flower garden, cute birdhouse, garden angels - anything that could be placed wherever you could see it easily.

Wednesday will be tough, but you know Gabe is in the perfect place and probably sending you some signs to let you know he's watching over all of you :)

Helen/'Lucy'

PS - You're doing a terrific job with your beautiful Jonah!!!

Anonymous said...

And how could I forget to remind you ,that little man baby of yours is adorable, and those big baby blues, I am sure are going to break alot of hearts.
Love ya
Gina

Anonymous said...

I have been following your blog for quite awhile and posted a couple times to just send some good thoughts your way. I can relate to your precious Gabe. We had a beautiful daughter, Cassidy Lynn, she was stillborn 13 years ago when I was 7 1/2 mos. She was PERFECT!! Anyway, just passing on that time does help heal and we always celebrate her day with a birthday cake and we let helium balloons that her sisters pick out go and send them up to heaven for her! I put real flowers out in the summer, and it is sooo peaceful to go out to the cemetary and sit. Best wishes for your many challenges!
Tracey/Wisconsin

Anonymous said...

Hi. I had an idea about the dawn dishwashing soap to make it easier to use on large areas. Try some dawn in a spray bottle and dilute just enough so you can spray it. Dawn even works on car grease. It even gets grease out of my clothes that have gone through the dryer. The only thing I have found that always gets grease out.

Mary Lindsey said...

Just wanted to leave a little note... found your blog yesterday, and I think you are an awesome mom with a fightin' little boy!!! God is so good!

As for getting aquaphor stains out, try using plain dawn dish soap. Put it directly onto your clothes, let sit for an hour or so, then wash as normal... should pull it right out!

Thanks for writing and being so transparent.

The Dolezal Family said...

We see Jonah and we love him.

Kammy said...

If you can find a product where you live called "Soil Love" it's a VERY runny liquid but gets out even blood and oil stains . . . so it might get out Aquaphor. In CA, we can only get it at certain stores (Stater Brothers to be exact, I've never looked at Walmart) but it's usually tucked away in the laundry isle easily missed. Small green pour bottle.

The Kahler Family said...

I have been checking on you a bit and have been praying for Jonah so much since I've found your blog. He is precious and such a blessed boy.
I didn't read any of the other comments so I don't know if it has already been recommended... Dawn dish soap gets any grease stain out for me... it works like a charm... ultra concentrate works great too (no bleach)! Rub it in a bit and let it set for a few minutes then wash as normal. Just make sure not to dry them before you're sure the stain is out (you already know that!). Another thing is that WD-40 works wonders too. You just have to put baby powder on the fabric after the spray because it is greasy itself and needs soaked up. Wash in the sink well before putting in your machine and don't dry it either, especially since it's a bit flammable!
Good luck with that!
You are in my prayers!
Angie in AZ

Anonymous said...

Murphy's oil soap!!!

nancy said...

Patrice and Matt,
You are approaching your first hurdle on what would have been Gabe's 1st birthday. Since he was born in the springtime when their is new life popping out everywhere, planting a tree or flowers in "his garden" in your backyard would be quite fitting. Each year you will see the rewards of them growing and flowering right around his birthday. A dogwood tree would be very nice esp. of what it represents anyway! If you could incorporate something with a butterfly would be nice too as they represent "new life". I will be thinking and praying for you extra on Wednesday. Just hold onto your little miracle, Jonah and be thankful that because of him, you now know why Gabe didn't survive.
I think sunshine is good for the soul. I am so glad we are having several days of it so you can all get out and enjoy it!
When I look at Jonah's pics, all I see is Jonah, honestly! He is so darn cute that you don't even notice anything else! His face, eyes, lips, chubby cheeks just melt my heart!
Patrice, you are hilarious talking about all that goes on in the middle of the night! I have a mental picture of it in my head! Love , love it when you post stories like that because it is the Patrice I know, that always would make me laugh with some sort of cute story!
Hope you have a great and beautiful weekend with the loves of your life!

Nancy:)

Erin Edwards said...

Something else we do on our clothes is put simple green (undiluted) on the spot before washing in hot water. Don't dry the clothes until it is out. I am constantly on the lookout for cheap shirts because they get ruined so quickly. I don't think I have a single shirt without a grease stain on it. It is worth it though for those snuggles;) Another thing I did when Ethan was little was to put a cloth diaper on my shoulder where his face would touch it and not my clothing. Scratchy clothing would hurt his skin too, so it helps on two counts. I loved the new pictures too, btw:)

Anonymous said...

I have been praying for Jonah and your family for over a month now. I am so glad he is eating much better. I know God has a plan for your family. On the stain issue try some dawn dishwashing detergent. Just put a little bit on the exact spot and wash in cold water.

SamPacey&Joshua said...

Another vote for regular Dawn. I used it for cloth diapers, when they'd get buildup. Then when my little one rubbed black grease (as in from an excavator) into his white blonde hair, Dawn was the only thing what would get it out. It's awesome stuff!

Buffy said...

Hey Patrice. Just wanted to encourage you to give yourself some grace on the "wanting him to look normal" front. My little one has a chromosomal disorder and she is really really tiny. I worry about those things too - will she be laughed at, will people always stare, will she ever have a date to prom...that kind of thing. It feels petty, but we just want our kids to "have it all", even though we know they already have it all in Christ! Praying for you - that you (and I) will be able to live in the moment and not be anxious for tomorrow!

Blessings,
Buffy (ylbuffy@yahoo.com)

Anonymous said...

We use a product by Amway/Quixtar (no, I'm not a salesperson!) that will take grease stains out of clothes that I buy at garage sales (and you KNOW those have gone through the dryer many times!) Here's a link: http://www.quixtar.com/products/product.aspx?itemno=E8945&ctg=2083


A little goes a long way!

Still praying for you in Illinois!

Anonymous said...

Goop (hand cleaner/degreaser) sold at the automotive dept. at Wal-Mart (and maybe Target) will take out set in grease stains. Rub it in and rinse with very hot water. Repeat until it comes out.

Anonymous said...

Vinegar is a natural degreaser. I soak my clothes in white vinegar and some water.

Susan said...

Patrice,

I have never posted on your blog, but I have an idea for your Aquaphor stains...plain old Dawn dish detergent. When I was younger I had to wear cotton slathered in vasoline in my ears. My hair got very greasy...my mom tried every shampoo known to mankind and could not get it out. Some one suggested Dawn and it worked. The motto "Dawn takes grease out of the way" is so true. I have no idea if it will work, but it is worth a try.

Also, Jonah is so cute. God Bless you and your family through this journey. God only give us what we can handle and you are doing an amazing job. You should be proud of yourself.

Susan
Upstate New York

mandi@it's come to this said...

Definitely keeping your family in my prayers, but especially on Wednesday! My husbands family does a balloon release every year on his brother's birthday. We now have young cousins & nephews around it's kind of an uplifting way for them to participate. As Jonah gets older he may enjoy sending a balloon to his big brother!! Whatever you decide, I'm sure it will be special & significant & perfect for your little Gabe. Continuing to prayer for Jonah & your family!

Anonymous said...

Johan is such a sweet baby!
Squirt a little dawn dish soap on the grease stain (aquaphor) before you wash it. It works great!

Chantal said...

Not sure if anyone has mentioned, but dish soap (I love Palmolive) works great for getting grease out of clothes. I just rub some into the greasy stain area (when it's fresh is best, but I've had it work on stains that have been "set" in the dryer as well) and then throw it in the wash like normal. Nine times out of ten, the grease is gone... hope that helps!

Praying for Jonah in Canada.

connie said...

I will pray that they always see Jonah. Just beautiful Jonah. As a mommy to a baby who was born with a cleft lip, I know what you mean. Of course, we want to not worry what others think of us/our children, but wanting that and being able to be that way are not the same thing. One thing you will find out is that fairly soon, you will stop noticing any occasional bad spots when you look at his face, and barely notice how others look at him. And friends only ever see the beautiful baby, anyway! You aren't heading outside the home much in these early days, so maybe you can just let that worry slide for some far-off time when you're out shopping with him in Target more often! :)

Anonymous said...

I've had luck with the orange scented, garage soap with pumice for Vaseline and Aquaphor spots on clothes. It's called Gojo and they sell it in the Auto parts section. If you kinda rub some into the spot and let it sit before washing in the washer it works great for me - better than OxiClean has.

The Murillo's said...

For the Aquaphor stains you may want to try Simple Green. You can find it in the automotive section. I know it sounds strange, but it can be used on clothing (bottle even recommends it). I once washed a tube of lipstick with all my jeans, and dryed them. I sprayed Simple Green on the stains and they all came out.

Jenn said...

For the stains try dishwashing liquid (with NO bleach) mixed half and half with water. Pour or spray on the grease stains and wash. It works like a charm, even on ones that have been through the dryer.

Saying lots of special prayers for your family.

Kassie from TX said...

If aquafor is greasy then I know a great solution for the stains! This stuff called LA's Totally Awesome. Here is a link http://www.lastotallyawesome.com/

It's sold at most dollar stores like dollar general and 99 cent only stores. It's very concentrated but it says on the bottle how much to dilute it for use on clothes. It gets the greasiest stains out! I had a fast food grease stain on a shirt and I sprayed some Awesome on it and let that sit for a while then washed it in cold water. It didn't come out in the first wash but I kept repeating the process and after the 3rd wash the stain was gone!


I really relate to you saying how you just want his face to be clear. I know this doesn't compare at all to your situation but my son has a hemangioma above his eye (link to a picture http://i3.photobucket.com/albums/y87/kassumms/Parker/9-10%20months/DSC00069.jpg) and when we go out places I know people look at his birthmark first and then his face second. Like I said, I know his birthmark is such a small deal compared to everything Jonah is going through but I just wanted you to know that I can relate to what you said. We just want everyone to see the perfect sweet baby that we see when we look at them but I can assure you that when I look at Jonah I see him first and blisters second. He is a very handsome little boy and no amount of blistering could cover that up. He is just beautiful. <3

Amy said...

I know you tried Oxiclean and Zout, but you might try just Zout alone. Try scrubbing it into the greasy stains with a fingernail brush or an old tooth brush. I swear by Zout and I find that it will even work on washed and dried stains. It's worth a shot! GOOD LUCK!

As always, praying for Jonah in CA!

Amy