Thursday, January 28, 2010

this and that

Hi Friends.

This will be a short post because it's 10:15 pm and the first time I feel like I've really relaxed all day. I thought it was cold outside just based on how it felt when I opened the back door first thing this morning. Then my friend, Aimee, came over this afternoon and told me it was in the 50's and beautiful so the three of us went on a walk. And then Jonah cried the whole time, we had to cut the walk short, and he had to be carried back. But that's neither here nor there.

We've had an okay day, but Jonah refused to even take his thirty minute nap in bed today, so literally, the only time he has slept today has been in my arms. I've gotten very little done, but did manage to clean the whole kitchen while Matt gave Jonah his last bottle of the night.

Oh, Katie wanted me to let you guys know that as far as items donated, we are good to go for the auction. I think we have ninety some items, which is just amazing (we were originally hoping we'd get twenty!!!). THANK YOU SO MUCH! This is going to be so great. Now we just have to get the word out so there will actually be enough people to bid on all this great stuff! If you'd like to offer a back-up item in case some of the stuff falls through or donate money to help with shipping costs (so 100% of the bid money can go to DebRA), you can email Katie at jonahsebauction@gmail.com.

And before I end this I would just like to ask for prayers for Jonah tonight. His little boy parts are in very rough shape right now. This happens once in a while, but this time they will not stop blistering. Usually the blistering stops after two or three days, but we've been draining three to five blisters a day in that area for probably the last two weeks. It's really hard for it to start healing when the blisters JUST KEEP COMING. Several times today he would be perfectly happy and then would suck in lots of air and just start crying. I'm pretty sure he's crying at least part of the time when he's urinating. I'm keeping Desitin on him with every diaper change hoping to create a barrier, and I'm sure it's helping some, but the raw areas are so widespread right now... I don't know. I just know it hurts him, and I want it to stop.

As always, thanks so much for praying.

I don't know about you guys, but I am so ready for the weekend. Five to eight inches of snow expected here. I could do without that, but a weekend's a weekend, so I'll take it.

37 comments:

Danny, Angie, Jacob, and Abigail said...

Praying for Jonah and for you and Matt, as always!!!!

Amy said...

We (Peyton, Sarah and me) just got good giggles out of your Charnette message. We listened to it a few times. I'm glad you felt relaxed today! Hoping for MANY more of those days as the spring weather comes (except this weekend, stinkin' snow).

Tina said...

Hi,

Remember me. Just wanted you to know that I am still keeping tabs on you. Wishing your little one well. It is so hard. My kids have had the stomach flu and that's hard enough to watch that. I don't know how you do it? Thanking of you

Tina
www.littletotsbigideas.blogspot.com

Corby and Lauren said...

Poor Jonah! I can't imagine how painful that is! I know when Harper has diaper rash, she can't even sleep. I don't know if this ointment would be effective for what he's dealing with, but Dr. Smith's ointment (over the counter...I get it at Target) does wonders on her rashes. I realize they are different things, but I just thought I'd pass it on because I had never heard of it. Our pediatrician recommended it... but obviously you know what's best for him! Hoping y'all have a great weekend together as a family!

Laura A said...

Poor sweet baby - lifting him up right now! We're getting rain, rain and more rain right now. Jackson (my 5 yr old) is convinced this will turn to snow, though I'm not sure where he got this idea. I think it's just wishful thinking on his part!!

Anyway, I hope you have a wonderful weekend and that Jonah heals quickly. Stay warm!!

Love from TX!
Laura

Penny said...

I use the Aveeno (unscented) diaper rash cream on my grandbaby. It works wonderfully. My kids had sensitive skin and Desitin always made things worse for them. Hope it heals soon. Poor baby.

Kelly said...

Hi Patrice. I read your blog everyday, but never really comment. I pray all the time for little Jonah, and will continue to do so for the specific issue you mentioned in this post. You may have tried this already, but Buedroux's Butt Paste works magic! At least on redness/rashes. I don't know if it would do the same for blistering. Literally one application of it takes away any redness/rash. It's kind of expensive, but very worth it. I have extra (new) tubes of it, and would be more than happy to send you some. Please let me know if you are interested. email: kellyhancock78@yahoo.com.

jamie said...

Hello! My nephew dealt with this as well (RDEB) at 1 year and i know his mom put tons of aquaphor on the the tip to keep it moist and was told that it's very important to make sure he is still peeing. Wouldn't want that hole to close up! Best of luck - that's a tough one!

Sabrina said...

Praying for Jonah extra hard right now for healing. Poor little guy, I hadn't ever thought of that part of EB and am aching more for him and your mommy heart. Prayers, prayers, prayers.

brandie said...

:( poot little man. Try having a great weekend, and may he get better soon! I can't imagine all the pain he endures...

fire890 said...

Hi you do not know me, but I found your blog through another families blog and your familys story touched me! Jonah is the cutest thing and i pray for him everyday, i have went through struggles with my own son who is 17 months now but was born at 24 wks and was 1.5 pounds, he beat the odds and I do not know your struggles, but i have so much hope and love for your baby, he is a blessing and if it makes a difference he has blessed my life in many ways. I will pray for him everyday and I hope he feels better soon.

Andrea McCollum here is our family blog www.aamccollum.com

Sailor and Co said...

I have to say that desitin always made things worse for my babes too...they would get open sores almost blisters when they would have the poops....the only thing that helped was oatmeal baths (oatmeal in a ladies stocking right in the tub water) and or baking soda baths.(sprinkled right in the water).and then open air..it seems that anytime I have used a barrier cream it hasn't done the job..but who knows...every kid is different..and with Jonah's sensitive skin it must be so hard to figure out what works..poor guy..I will pray for his man parts for sure.

thorney said...

Praying for Jonah. I read that and I cringed, as I can't even imagine how painful it is for the little guy. Praying.

I'm sorry Jonah had a bad day, but happy you were able to let it go and just hold him, loving on him and relaxing a bit.

Prayers for you, Matt and Jonah.

Blessings, Mari

Jill said...

I'm assuming it's impossible to "wear" Jonah in a sling, due to friction? Because then at least you could move around while he's sleeping...he's probably too heavy now anyway? Oh well...will be praying for his boy parts...i couldn't imagine that...heartbreaking. Praying for you all as always.

Heidi said...

I will keep Jonah in my prayers.

I did not know snow was coming!!

jess said...

POOR THING!! Big prayers for healing, that must be so very painful.

Tara said...

Praying for Jonah!!

Wanda Wilkinson said...

Praying for Jonah to get some fast healing--poor baby.

Looking forward to the auction so I can bid on some great stuff---

Love & prayers to you, Matt & Jonah.

boltefamily said...

praying

Jennifer L said...

I'm not sure if it would work for Jonah, but my son had a horrible diaper rash and we used Bag Balm (or Veterinary Balm which was bought in the pet supply area at a Walmart I believe) and occasionally used an anti-fungal(one of my son's rashes turned out to be a yeast infection on his skin, but I think the anti-fungal would probably be too rough for Jonah's skin).

Heather said...

Poor baby! I will definitely be praying. My son was a preemie and got a bloody diaper rash from special formula to help him gain weight. They told us to use Triple Paste (from Walmart), and it worked better than any diaper rash cream we had tried. Maybe it would help? It literally creates a barrier and helps the skin underneath heal.

Jenny loves Louisiana said...

Oh man. Not great news. Poor baby!! You are such a sweet mommy. I will pray my heart out all weekend (and always) for all of you!!!!!

Diane said...

Prayers for your little man and hope that you have a great weekend despite all of the snow.

Bethany said...

Poor sweet baby. :( For my little guy, once the skin was broken for a diaper rash (which I know is different), the desitin just stung and seemed to make things worse! Aquaphor and Arbonne diaper rash cream worked wonders. The Arbonne is so pure. He would wince when I put on the desitin. Praying it heals up fast.

Tracey said...

I am praying for Jonah. My little boy used to get terrible rashes and the only thing helped was Triple Paste which I buy at Target because it is cheaper there. It is not cheap but it is thick and keeps the area protected. I now use it on my daughter when she needs it.

Melissa said...

I know you have read a lot of suggestions already but do you also use powder on him or can you? My son's nurse told me to put a thick layer of desitin and then powder or corn starch to create more of a barrier. Not sure if you can do that but it worked wonders b/c the powder kept the cream from wiping off on the diaper. Hope he feels better soon.

gedwards1810 said...

Father, I pray for Jonah and his present blistering condition. It is so hard to understand the why of the pain he has endured so far and there seems to be no end in sight. Father I pray for healing in Jonah and for his discomfort to cease. I cannot imagine how Matt and Patrice stand seeing Jonah in pain with seemingly so little they can do to provide relief. Father I pray against his pain and ask you to block his sensation to it while his skin tries to heal. For Matt and Patrice, give them patience and faith beyond our understanding that they stay strong when frustration builds and there seems no where to turn from this disease. In the healing name of Jesus I pray....

Lisa said...

I have mild EB (simplex only) and colloidal silver heals my blisters extremely fast. Silver has natural healing and disinfecting properties You should be able to get it at a health food store.

Carrie said...

Do you think that Jonah would sleep in a moby wrap? That way you could get some things done too. I know don't know if this would cause blistering, but the fabric is very soft and he would likely only touch the fabric with bandaged areas. I just know this was the only way my daughter would sleep for the first 8 months of her life!

The Cadwallader's said...

I've been reading your blog for a while now but don't comment. Like you, I live in NC and am a teacher. Jonah is such a cutie! I'm looking forward to seeing pictures of his 1st birthday party in a few weeks.

Jennifer said...

Could you use one of those fabric baby holders so you could get stuff done? Wish I lived closer I would love to help you out (not stalker wise) while you enjoy your son OR actually get house work done (while I learn more about EB..) QUick question, Do you know how many kids with EB are in the foster network?

chinamoon1420 said...

That just breaks my heart for baby Jonah. So not fair.....
Lots of aquafor and desitin. Maybe the desitin first if you can then tons o' aquafor. I am sure you are already doing this though.
Patrice, you are really an amazing woman. What a cross you are having to bear and Jonah too but you are doing. I pray for you guys everyday.
Much love

Melanie said...

Oh how that must hurt little Jonah!!! Praying for healing!!!

Linda said...

Hi Patrice:
Isn't it just great that you receive so many suggestions for Jonah's problem. People are so considerate and caring. It really amazes me. It makes me feel all fuzzy inside just to know that there are so many nice people in this cruel world.
Samantha is back in the hospital and Daisy is in the hospital. Do these poor EB children ever get a break. Sorry I just had to get that out. I DESPISE this awful EB with all my being, and I know you do too.
Take care Patrice and give Jonah a kiss for me. Tell him Leah's Nana is always praying for him. Love you guys. Love Leah's Nana

Rebecca said...

Praying. Enjoy your weekend!

Ronda said...

Just a suggestion...ask your doctor if there is anything other than Desitin you can use. I just got a prescription for my son for aquaphor mixed with a blood pressure medication that is ground up. I know it sounds kind of crazy, but maybe it will help your baby boy.

teacheroftwos said...

Praying for Jonah! Seems funny to pray for his Boy parts, but hey anything for Jonah! I wanted to recommend Mother Love Diaper Rash and Thrush Cream! At first sight of a rash I put it on my kids and it clears it up quick! Just a thought...