Wednesday, June 10, 2009

el problema de las manos, parte dos

Today has been a decent day. About an hour after I last posted, Jonah took five ounces, no sweat. And part of that was his second helping of juice, so within just a couple hours, things began to move... if you know what I'm saying... twice... all over his leg bandages. Got a visual?

Trials two and three have failed on the diapers. I tried Simple Green and Country Save tonight, as well as boiling hot water, but it may take several treatments. I am not giving up hope. I'm excited to write down your suggestions from the comments, and try things until something works.

I have great photos from the party Saturday (not so much of Jonah as he slept through the entire thing), but some great ones of birthday girl, Maddie, and
my ever-so-talented-cloth-diaper-making-friend Jen's little boy, Jude. But I'm way too tired to get them off the camera and post them tonight. Sorry. I know you peeps love you some cute photos... and I'm no photographer or anything, but let me just say, I'm patting myself on the back over these. Too cute.

Jonah's hands were in decent shape when we unwrapped them tonight. He had a few blisters that needed to be (re)drained, but the swelling had gone down. So tonight I've wrapped the body of his hands, but left his fingers out. We'll see how that goes. I know ideally it would be best to wrap his fingers individually (a necessity with RDEB, but not with JEB) to protect them best yet still give him full use, but I can barely get him to hold still when I'm wrapping just the body of his hand. I can watch videos til the cows come home, and that's still not going to help me wrap his hands. Homeboy is strong. And ill. And doesn't like to be messed with. You have a very small window of opportunity when doing anything to his hands.

And oh man, I forgot to say that JONAH IS COMPLETELY OFF OF BOTH ATIVAN AND MORPHINE. And has been for about a week. I can't believe I've forgotten to mention it before now, but this is such an answered prayer and blessing that he is off those mega-kick-butt drugs. Now we're controlling his pain with Tylenol only when needed. And besides being the fuss box he's always been (the pictures only make him appear to be a laid back baby), he's handling things just fine.

Ok, my eyes are closing as I type these last words, and I'm sufficiently pumped pooped out, so off to bed. I'll try to get some pictures up tomorrow, but no promises. I'm way overdue for a Target run. Priorities, people. Priorities.

39 comments:

Tribulation said...

it is possible that his hands swell because they have been wrapped for so long. maybe if the bandages were lossen slightly... but i think that might cause more blisters.... just something to think about though and maybe discuss with other eb families to see how they handled it?

well good night to you and jonah

Ki said...

So glad Jonah's hands are better and that things are, um, moving again!
My 3-year-old son has had digestive issues all his life- GERD being the main problem- and I just wanted to mention the idea to you of looking into Miralax. It's a very gentle over-the-counter laxative, but it's absolutely necessary for my guy or things just stop moving. He takes a daily preventative dose and our GI specialist says it's not harmful in any way. I also mix in a Culturelle capsule to keep all the healthy bacteria in his bowels thriving... all mixed in apple juice and given with a needless syringe. Once we found the right dose- it really changed things for my little boy. It used to be he would spit up hours after nursing- and all the breastmilk would STILL be in his stomach- curdled. Now everything moves through and he gets hungry more regularly, eats better, etc. Just wanted to throw that out there in case it might help. Praying for Jonah!

Ki said...

oops- that should say needle-less syringe! It's late!

Tricia said...

Glad that last night wasn't worst case scenario. Sounds like it went pretty good, all things considered. I hope you get some good rest tonight. God bless.

Channe said...

Glad to hear that Jonah's hands aren't so swollen.

Hope success with those stubborn diapers is right around the corner.

as written by Barbara said...

Wish you weren't so tired... glad you are getting right to bed! Yeah, things are on the move, but it didn't need to be gushers... humph...

Guess what came in the mail today... my magnet!!! and I only ordered it on Saturday... so exciting!!! Jonah, I'm writing you a bigggg e-mail in the next couple of days so you better be good!

Have a good tomorrow,
Barbara Lyman:-)

Laura A said...

Hi Patrice-

I'm just about cross-eyed, I'm so tired, but wanted to let you know I'm still praying for Jonah's hands. Glad they didn't blister as much, and will pray for less swelling!

BTW, Miralax is a Miracle Worker (noticed Ki's post above) - we use it on our 3-yr old who battles constipation all the time! Don't know if you can give it to babies as young as sweet Jonah, though. When he gets older, fresh pineapple and watermelon also do the trick for us! (Sorry - TMI!)

Off to bed - continuing to pray!

Love,
Laura

Dana said...

Have you tried Fels-Naptha? It is a laundry soap in bar form. I would hand wash in the sink any tough stains I wanted to remove from my children's clothing. Then I would throw it, all sudsy, right into the washer and proceed with a regular cycle, adding my regular detergent. Worked like a charm:)
Keeping you in heart and prayer<3
Your sister in Christ and fellow Target fan club member,
Dana in MD

mrs. mari said...

glad to hear that jonah's hands appear to be better--good news!

sitting here trying to thnk what else you could use on the diapers. dawn is a grease cutting agent, yet it didn't work for you. maybe there is something at the hardware store along the lines of "goo be gone" only for using on clothing? thinking . . .

and i have become a target fan! i have been at my sisters house in las vegas, with my mom (took her there for a week to visit and she had a stroke on the plane, and then 3 heart attacks) anyway, my sister loves target and there was one right across from the hospital. i spent the last month going to target every day. literally. i had to buy a huge suitcase to haul it all back to seattle. i don't have one any where near me here, but i am the gps in the car can find me one here.

carissa said...

hmm maybe you could try washing his diapers with a chelating shampoo (joico makes one..you cant get it at target sorry LOL) or paul mitchell shampoo 3..they take hair product/shampoo build up out. maybe worth a shot?! good luck!

Becca B. said...

We understand, Target comes first...So glad to hear little hands faired well. Many prayers were said over those sweet little hands he doesn't want you messing with.

Love from Arkansas!

Kelli said...

Praise God for no heavy drugs. Will continue to pray for decreased swelling and no new blisters. Have fun at Target and hope Jonah will sleep the whole time.

Kim M said...

Whoot - whoot for Jonah being off those medications!!!! Way to go Mom! It's amazing to see how far you've come - do you ever go back on your blog to see what it used to be like? Praise God for answered prayer and precious baby Jonah!

Kriss said...

I cloth diaper and I have found that for poop to use the liners and if it's a little bit of staining to spray the simple green on it (which you mentioned using) and then wash as normal. If it's BAD staining then I rinse I use simple green on it, do a cold water rinse in the washer with a scoop of borax right then. THen once its spins I put it in my dry pail to be washed with the others. Rinsing is a HUGE help in keeping staining at bay. There is also this stuff you can get at Dollar General called M-40 and it's like a dollar a tub. I kid you not this stuff works miracles. My son dripped quesidilla grease on his collar on a polo shirt. I knew the shirt was a goner. I put that stuff on it and then let it sit 15 mins and then washed. The grease was gone! Then another time my baby threw up blueberrys all over his bedding. I just knew I would never get the stains out of it sheets, baby blanket, etc. Again, I put that stuff all over his bedding, let it sit 15 mins, the stain went from purple/blue to hot pink. I washed it with cold water and I kid you not it got all that blueberry out of everything. I am still in amazement over such a cheap product that works so well. It's supposed to get out chocolate, blood, grease, etc. So it would prob. work on a poop stain and help get the aquapher out as well. -Kriss

Kristen said...

So much good news - less blisters AND off of those meds. We're praying everyday. Have a great time at Target. I think Target is one of those things God meant when He told us He came to give us life more abundantly. :)

Suzanne said...

Glad Jonah's hands are better. Just wanted to let you know I saw a Jonah magnet on a car yesterday near Mt. Tabor High School in Winston-Salem!

Anonymous said...

Priorities for sure. Keep it straight Patrice! LOL! Good, keep trying with those diapers. Something will work or they will just dissolve in the wash! Glad you are experimenting with the hands too. I know it will all come together! Jennifer in Southeast, NC

SweetP said...

Hope you get to have your Target fix today. :)

It's so glad to hear that Jonah's hands aren't blistering as badly as you had feared.

We sent you a package (over a month later than we had hoped) with some milk storage containers the other day. By now, you may not need them anymore, but we decided to send them on just in case. I had meant to note that you will not want to fill them up over 4 oz if you plan to freeze them. The extra room is needed or the lids will pop off. (Last night, my husband asked me if I'd remembered to note that.)

Anyway, still praying for you and Jonah...and Matt!

Anonymous said...

Patrice, I am proud of Jonah. He seems to be strong in body and mind, he knows how to do what he wants to do when he wants to doodoo (sorry) it. Good for him.
But, I am REALLY PROUD OF YOU AND YOUR DETERMINATION AND PATIENCE AND YOUR RESOLUTION TO DO WHAT IS RIGHT FOR THE WILLIAMS FAMILY. I look forward to seeing the pictures you made of Maddie and Jude, as photography is NOT my gift. Keep up the good work, dear friend. And if you want/need a partner for your Target trip, let me know.
Sandy

hellomorleen said...

Don't forget to post your "Target List" vs. "What you bought" list. They are so fun to read :)

Blessings to you and your sweet family. I think of your lil' Jonah all throughout the day everyday.

Toni :O) said...

Still praying for your sweet boy. I'm glad to hear the swelling isn't as bad and here's praying that God gives you the wisdom and guidance you need regarding his little hands. You're doing a great job and have fun on your Target run. I, like you, am a Targetaholic and proud of it...I'm especially happy there with a Starbucks in my hand! Woot Woot! Oh, and best of luck with the crazy laundering of those diapers. Unfortunately, I have no guidance or suggestions to offer you but I'll pray they come clean for you.

Mike and Mindy Aumann said...

PRAISE GOD for getting off the meds!! I'm sure it's a relief to see him doing so well off of them.

Continuing to pray! :)

Anonymous said...

Good Morning! I have never commented before, but wanted you to know that I pray for you, Matt, & Jonah everyday! You have such a sweet baby and I know God has special plans for him. Keep going and hang in there. I feel so bad for you when you are down and wish so badly that I lived close so that I could help you with Jonah. Know that you get extra special prayers on those days!

As for getting the Aquaphor out of his diapers, have you tried "Greased Lightning"? Comes in a white bottle with a yellow label. I know you can get it at (gasp!) Wal-Mart, so I am sure you could find it at Target too! It is on the same aisle as the cleaning supplies like lysol, comet, tub & tile cleaners. It is some tough stuff & is supposed to work great on "greasy" stains!

Good luck and I will keep praying!

Dana in Mississippi

Sandy said...

So happy to hear about NO MORE Ativan and Morphine . . . I've been meaning to ask about it. Still lovin' your postings, and of course still (AND ALWAYS WILL) lovin' and prayin' for Jonah and the Williams fam!

Love to you all,
Sandy in little ol' King, NC

Elizabeth said...

i know this sounds RIDICULOUS, but my grandmother swears by a cap of lighter fluid in the wash followed by two rinses to remove grease stains. if you get REALLY desperate and think you might want to try this insanity, i'll post the instructions for you.

**please blogworld, don't judge me for suggesting this...only trying to help!**

Amanda said...

Hooray, God for Jonah being off those heavy drugs. :D

Melissa said...

Yay! I'm so happy to hear that Jonah is off the big-time drugs and you're using Tylenol as needed. That is fabulous news!

Praying that his fingers do well unwrapped, and that you find time for a Target run!

Blessings from NM.

Malinda said...

Another thought on removing build up...Try placing several paper towels over the build up and then using a hot iron let the build soak into the paper towel. The paper towels have to be moved as they get saturated. One of the other solutions may work then to get out the residue. This has worked really well for me in the past ....even on the maroon candle I melted into the back seat of my car (NO STAINS left over!!)YAY! Have you contacted Aquaphor?

Kathryn said...

Yay, glad his hands are adjusting! I'll be over tomorrow, I'll give you a call...love!

Beth.. One Blessed Nana said...

Praying that Jonah's will experience better circulation in his hands and that the blisters will heal.

Hope you had a good night,

Autumn said...

Wash the diaper with dawn in your washing machine. Then rinse & rinse & rinse in of water. I usually go ahead and do several hot washes with no detergent. I've never had aquaphor build up but have had other.

Anonymous said...

I love how often you have been posting Patrice! Keep up the Jonah updates. I am hooked. And praying for you all!

kace said...

Jonah is precious and we will be saying lots of prayers for his lil hands! BTW I tagged you on my blog:)

Ebeling Family said...

PRAISE THE LORD!!
SO glad he is off those other meds- what a huge step fro the little guy :)
oh..and you are hilarious. sufficiently pumped- too funny!
btw. I showed my little brother the picture of the lady pumping with the special bustier you were talking about in a couple of your past posts (when I say "little"- I mean 22, 6'1", 180 lb. little)His jaw dropped and said..."you've GOT to be kidding me."
it was awesome.
Anyway...still spreading the prayer around to whoever is willing to pray with me about healing for Jonah.
Have a great night!
~Em

Anonymous said...

Just wanted to tell you that your blog cracks me up!! Obviously not about Jonah etc but just the way you write- we have the same sense of humor:0) Like when you said homeboy i was cracking up!and thinking if my mom read this she would be like what?! Anyways, we arealways praying for you all and amazed by your strength! everyday gets a lil better:0) take care
Sara from St.Louis

purejoy said...

i love how you all just keep on keepin on. way to go! and way to go, jonah(if you know what i mean, lol)
press on. y'all are doing fantastic!
and the pictures are completely precious from the bday party!

Joy H said...

You are doing an amazing job!!!!!!!! Keep your chin up and take day by day. What a blessing your are to sweet Jonah.

On the constipated note, you could try glycerin suppositories. They make little ones and when my now 11yo (gulp) was a wee one and I didn't want her to have juice yet the glycerin worked like a charm. Good luck!

Cristin said...

Praying for you, Matt, and of course Jonah always!

Diapers-have you ever tried Charlies Soap? It comes in a powerder and is all natural. My cousin swears by it. Also I've heard Borax works well and isn't a harsh soap either.

Anonymous said...

My friend told me about your blog and your cloth diaper issues. I haven't had a lot of experience with aquaphor, but was wondering if you have bleached your diapers. Don't use a full cup, just about 1/4 or 1/2 cup, choose the biggest load setting, and run it on HOT water. I know FuzziBunz say not to bleach, but ANY diaper can be bleached on occasion, and as long as you don't use too much, it won't hurt them at all, even colors and prints. I've bleached my BumGenius several times.
Also, if that doens't work, try stripping them with dawn again, and just let them SIT in the soapy water for 24 hours or so. Then rinse and rinse and rinse until you have no suds.
I really hope you can get the residue out. Good luck.