That's it, ugh. I'm in a foul mood. I really don't have a good reason. I'm just feeling sorry for myself, and I have an attitude problem. I'm pretty sure Matt could vouch for that.
Jonah has had a good day today except for bath time. He was in a lot of pain and screamed the whole time. He's more banged up right now than usual. I'm not really sure why. He has a bad place that won't stop growing on his upper right side (sort of under his arm), had a new big blood blister on his left foot, has a bad spot where the skin is about slough off on his right cheek, and his boy parts are worse than ever. We're now mixing equal parts Desitin, Triple Paste, and Aquaphor in hopes that will aid in quick healing and provide a barrier so it doesn't hurt him so badly when he pees. I can't tell you how frustrating it is when these blisters won't stop growing and spreading. I can't heal them if they keep spreading. AGGGHHH! I put two to three slits in them with scissors, drain every bit of fluid out, and they still seal up and refill, grow, and spread. What starts out as a dime size place ends up being the size of a lemon. And then the skin sloughs off so you've got a huge patch of painful, raw skin. FRUSTRATING.
Anyway, I went to Walmart today and could say about 100 negative things, but instead I'll focus on the positive: my cart was not broken, only about three creepy old(er) men checked out my butt when I walked by, and I didn't say any bad words when the alarm went off as I walked out, and I had to stand there waiting for them to check my receipt (that contained at least 60 grocery items... fun times). See? I'm the eternal optimist.
I'll go to bed now before I overwhelm you with my cheery demeanor.
I'm sleep deprived (my own doing), self pitying, and losing perspective.
I'll feel better tomorrow.
On a bright note, Courtney called me today, and we got to chat for a few minutes. I really love that girl. She's my hero!
45 comments:
Hang in there.
When Mason would get really bad diaper rash, I would leave his diaper off of him for a couple hours and just let him hang out on some blankets and towels. Yes, he peed everywhere but the air seemed to always help it some. I'm not sure if this is an option for Jonah, but maybe if you monitored him closely and didn't let him squirm around much it wouldn't cause any additional blistering and give the raw area time to heal up a little without staying so damp...I don't know, just a thought.
Praying for you. I was nanny for a kid who's bottom was eternally raw and his doctor suggested A&D and blow drying before putting the diaper back on. I am not sure if this would work for Jonah, but it is an idea you could ask the doctor about. I will keep praying. God bless.
you do NOT have a bad attitude! obviously i dont really know you but from what you have been through and what you deal with on a daily basis it actually seems like you have an incredible attitude! everyone is allowed a bad mood once in a while.
hope jonah's blistering improves really soon.
So sorry, Patrice - I'll pray for healing (quickly, as well as permanently!) Will also pray for you to rest and have encouragement. Please let me know if there's anything at all I can do for you (even from TX!)
Love,
Laura
PS - Caroline has started making Jonah a birthday card - she's so excited about mailing it to him!
Hi sweetie... I haven't commented in awhile, but I read & read, pray and pray even more. These posts are just breaking my heart for both of you.
I have an ileostomy and whenever my skin gets really excoriated and I still need to put my pouch back on I use BAG BALM.
The have it now in some of the pharmacies, but make sure there aren't any perfumes in it. The kind is like what they used to use on cows udders.
Sounds silly I know... maybe worth a thought...
Lots of Hugs for you all,
Barbara Lyman :-)
Marysville, WA
I love you, lady! I'm sorry it's been such a rough few days. I'm always thinking of you, even if I'm not commenting or calling. I know you know that, but I have to say it!
And seriously, they check your cart if the alarm goes off at Wal-Mart? Here they don't do that. They wave you out the door. Of all the luck!
Can't wait to see you in just a few weeks. Love!
Have you tried Arbounnes baby cream. It's an all natural product and when my child had Hand Foot and Mouth it kept the blisters dry! Here is a link to their website http://www.arbonne.com/international.asp
It is a bit pricey for diaper cream, but like I said, it works wonders!
Have you tried mixing some Maalox in with the creams for his diaper area. It helps with calming the acid to keep it from burning the area more. I don't have experience with EB, but learned the trick with a baby recovering from rota who was miserable. Hugs!
Hi there, I read your blog daily to check on Jonah, but this is the first time I have commented. My daughter used to get horrible diaper rash and while I know it's nothing close to what Jonah must endure we found this amazing diaper rash cream, pinxav, http://www.pinxav.com/. It isn't found in many stores so we found ourselves ordering it online after using the smaples we had gotten from te hospital. It is amazing and after putting it on at night the diaper rash would almost cleared up in the morning. On the website it says it can be used for other uses too so I just thought I would mention it if you wanted to give it a try.
Hang in there - praying for you in Los Angeles, CA.
Joy
Thinking of you and so sorry you are in a funk today. I pray that tomorrow is a better day for you and Jonah.
I'll be the babysitter for you girls to have a night on the town!! :)
You are doing pretty good if you have a boy with all that going on! Wow! I am praying for healing. You have all rights and reasons to be totally frustrated!
Jennifer of Southeast, NC
I am so sorry that poor Jonah is hurting! I just wondered if you have ever heard of Lucas Paw Paw ointment? It is all natural and I have used it on both my kids everywhere since the day they were born. It is great with diaper rash and burns, really anything. I just wanted to mention it, I am sure you have tried everything and are getting better advice form EB experienced moms, but I couldn't resist mentioning it - you never know right. It is form Australia, if you are interested in trying it, let me know and I will send you some. Erin Mitchell
eemitchell@gmail.com
Bless your heart and bless Jonah's heart. When my girls were little they had really sensitive skin. I found mixing Resinol with 5% Cortizone cream worked wonders. Resinol is over-the-counter but for whatever reason they keep it behind the counter at the pharmacy. And yes, you can get it at Walmart :)
I am a new(ish) reader and I don't have any advice, but I wanted you to know my heart goes out to your family. Even if you don't feel like it- you are so strong and such a good mom. I hope you have a better tomorrow. You & Jonah are in my prayers.
Praying for you, knowing His desire is to hold you and Jonah and comfort you with His love.
I don't anything about EB other than what you have educated me on here on your blog. I can't imagine what your days are like. I can offer you this, when my oldest son was little he had the most awful diaper rash--a deep read everywhere. I kept a diaper off of him for several days and let the air do it's thing. It did and the rash finally went away when the trigger, the urine was removed. Yes, you have to sort of try to catch the pee in a towel, but it worked.
Keeping you in our prayers.
--Mari
I wish there was some other EB mom out there who could say "do this....." and that would clear it all up. I can't imagine how much your heart aches for Jonah. I don't see how you can bear it but you do. You do it every day and you do a great job. You are SO allowed to have your pity party days. If you didn't you wouldn't be normal. Have a good cry, ask Matt to hold you in his arms and tell you everything will be OK even though you know it won't....Maybe that comfort will help. Wish I could do something to help.
Funny how you can care so much about people you don't even know!
Hope Tuesday is a better day and I am praying Jonah wakes up with some evidence of healing in all the bad blisters he has going on.
Much love to you and baby Jonut!
I have no advice for anything for your lil' Prince Charming, as I am not a Mommmy, and for that I am sorry. However, I do want to offer some praise to you for being such a GREAT and STRONG Mommy to that lil' babe. God KNEW when he picked you and your husband to be lil' Jonah's Mommy that you two would be the best parents Jonah could ever ask for. He also knew that you two could handle whatever it is that is thrown at you. It takes a special person to be a Mommy to a child with special needs, and you ARE that Mommy. But you too deserve to have a pity party, if you will. For everything you go through with him, and all the fighting you have to do to make sure you Son has the best of the best, including medical care. I can't imagine the pain that you and your husband go through every day knowing what kind of pain your Son is in and yet you can't do anything about it. Every parent would take their childs pain away if only it would spare their child, and I just can't imagine that feeling. I know my Mom shares that same pain with you, for I too have multiple chronic health conditions. I just can't imagine. I pray for you and your family every day and hope that when Jonah wakes in the morning that there be some healing of his lil' body. I pray that you too can find some good in this, and that tomorrow is a better day not only for you, but for Jonah as well. Big HUGS Sweetie. Don't ever be afraid to take a few minutes for yourself! You deserve it Momma.
Keep on keeping on dear.
Sounds tough, honey. Sending love and prayers your way.
Cxx
poor baby jonah! no baby should have to go through all that. and no parent should have to deal with what you are going through!
sometimes we all have crappy days. its ok to complain a little bit, i think! :)
i'll keep yall in my prayers!
I am a long time reader but first time commenter. You have an absolutely beautiful family! I love the pictures of Jonah, he has such a lively, full of mischief look in his eyes!
I know you have alot of advice already but when our boys had bad diaper rashes we would use Vitamin E liquid capsules. We'd open them and spread them on the area and cover with our regular diaper cream. It was really amazing how fast it would help it clear up. I'm not sure if you would be able to use this with Jonah but we have skin issues (psoriasis, eczema, etc) and it worked for us.
Every mommy gets in a funk somedays, with all you have to do to keep Jonah healthy, I would say that you are allowed to be in a funk more than most! It must be very stressful sometimes trying to figure out what the best is for your son. I am praying for you all.
Karie - Canada
I'm so sorry! Praying for a better day today and for quicker healing of Jonah's skin.
It breaks my heart to hear Jonah having such pain, and I can't imagine just how hard that must be for you. I'm sure you are sick of hearing random advice from strangers, but thought I would mention that I know a child with mild EB and his mother swears by raw, unrefined shea butter. It has been amazing with the healing process. Just a thought! Praying for you and Jonah, always.
Big hugs to you...so sorry it's a rough patch...still praying for you!
Poor mama and Jonah. I pray that you both have a better day today. Staying away from that icky Wal-Mart should aid in a better day. Maybe you could treat yourself to a Target run soon.
Praying for you,
Ashley
Partice, It has been far too long since I posted on your blog.I missed several days due to final demise of MY computer, I check on THE WILLIAMS FAMILY as often as I can. Although Jonah is the central figure I PRAY FOR EACH OF YOU.
Love & prayers always,
2shoes
So sorry. We love Jonah and are praying hard for you all daily. I'm so thankful FOR Jonah and for his mommy and daddy who are so brave and love God and are awesome too. :)
Love, love and more love to you. You can be all the crabby you can't help but be, and you are still loveable and loved. But I know too, that bad moods hurt (boy, do I know), and I am praying for some relief for you.
WendyBee
You are more than entitled to have moments like these. It's not a bad attitude, it's life, and I can ONLY imagine the high highs you may have, and possibly the low lows. Keep your head up if you can. By the way, Jonah is such a handsome little man! Thanks for sharing your family with blogland.
you are allowed to be in a funk. you are a great mom. and you are getting really good with the camera too:)
Go Wake Forest----enjoy your time at the game with Matt--I know Granny will enjoy her special time with Jonah..
God will continue to bestow His blessings & love
I hope today was a better day for all of you!! Praying for you and Jonah :)
I don't think I have ever posted a comment on your blog. I have been reading your posts for a long time now and have often wanted to post a comment.However, I always felt I had no right to comment. I know it sounds silly. I feel silly about it. Anyway, I just want you to know that I truly admire you. On your blog you are REAL about your feelings. You are honest about your worries and about what brings you great joy. I keep your family in my daily prayers. Your son is beautiful and the Lord has picked the perfect mother for him.
I'm sorry your having a tough day. I read your post and was thinking. My son had an allergic reaction to a medication for an ear infection and it among other things it gave the wost diarrhea. (He would have a fit every time he used the bathroom.) It was very acidic,and it blistered his skin, it was almost burn like when he used the bathroom. Anyway, the doctor prescribed a prescription triple antibiotic ointment, that was able to coat the blister when he used the rest room and helped it heal. I can't remember the name, but I thought I would share with you what we tried. Hang in there. I'll be saying prayers for you guys!
So sorry to hear about the pain Jonah is in. I hate that he is pain :(. Sending prayers yours and Jonah's way.
Not sure if you have ever tried this, but when I was having a tattoo removed, they always had me use a product called Second Skin. It is like a bandaid, only no adhesive. I dont really know how to explain it - the side that touches the skin is completely a liquid like gel and give the skin a chance to heal. Not sure how that would work for EB blisters or where the skin has sloughed off, but it worked wonders to heal the blisters from the laser treatments. Hoping tomorrow will be a less stressful day for you, hang in there!
xoxox~
I hope that you are both feeling better. I am used to you being an every day poster, so I hate to see you miss a day:(
Hope you had fun at the Wake game! You're an awesome mama to your sweet baby Jonah and such an inspiration, Patrice. Praying for his healing!!
Praying always for sweet Jonah. Really. The Lord bless you all, Williams Family.
I just read about Jonah's blisters in his diaper area, and I'm not sure if someone already suggested this to you, but Boudreaux's Butt paste has worked wonders on my son's diaper rash. It had gotten so bad as to be open wounds and everything was irritating it further, including Desitin and Balmex. We used a combination of cornstarch based baby powder and the Butt paste (available at Walmart, Target) and the areas cleared up within days and better yet, he didn't scream every time we applied it. Maybe this is another option to try?
MY son used to have really bad diaper rash, and NOTHING worked until a friend gave me this concoction that her sister's dermatologist gave her. I don't know if you can use it or not, but I thought I would send it, just in case. It worked magic on my son (for diaper rash). Maybe it would work for you too. Oh, and when you put it on, spread it on like icing.
A squirt of the following:
Balmex/Desitin (either is fine)
Lotrimin
Neosporin/Bacitracin (either is fine)
Hydrocortisone
Aquaphor
Mix it all up.
Then add MYLANTA until it become thick soup.
Then add CORN STARCH until it becomes thick and pasty again.
Good luck.
Beth
Patrice, You have a better attitude than anyone I know (even though I don't know you). You know what your "problem" is? You love your little boy with all your heart and want him to get better. You watch him in pain every day. That is more than any mom I know could handle. Hang in there. Keep praying. Keep pouring your heart out. Don't beat yourself up when you get pissy. The rest of us would be much pissier.
XOXO,
Susan
First time commenter here, long time admirer of Jonah ;0). I dont have eb, but I do have planter postular psoriasis of my hands and feet (my brother has it too now). We are both grown adults and as much as we love to get advice or suggestions about miracle cream we know they don't work on us. But we take them with stride like you must do for Jonah, maybe someday hu? A miracle make it go away cream. ;0) Anyway, I feel for you being stuck in the house, I have a 6 and 2 year old and we are done with this weather as well, and were in Texas. Wet, soggy, cold and boring! I laughed so hard when you mentioned the 'check your receipt' remark about Walmart. Did you know that is actually illegal of them to do? This has been a subject of many conversations in my household lately. Unless they have reason to believe your stole something, you can refuse them and leave. I have done it and they dont say a word. Sometimes you just have to stand up for your rights lol. Just wanted to comment on your beautiful family and funny blog (even when your not feeling so funny). Much love, a friend in Texas
You don't know me. I follow your blog. But I know what you mean about the funk. My daughter is now 15 months old. My world is finally settling down and now I am fighting so hard. not when she was in the ICU trying to die, not when I was planning her funeral for the umpteenth time, now...now that things are reaching a manageable place I am fighting. I am praying. I am reading. I don't want to leave the house. I don't want to talk to people. Oh well. We'll make do :)
Thanks for your honesty. My daughter is adopted and I just don't feel like I should post about myself on her blog. Just wanted to say I understand. I think the body can only take so much stress for so long before it says, Hey - remember me? :)
Thanks again for your blog.
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