An update on Charlie, the incredible skinless child!

[Splash]

Hi everyone.
Yet again I have been remiss in issuing a mass update. But when people are venturing over to the car seat board to ask how he's doing, it's time to talk I guess.

He is doing wonderfully. Really, he is. He has skin. Everywhere. Nice skin. Beautiful skin.

We now to 2 20 minute baths twice a day. First bath is with bleach to kill all the surface bacteria on his skin. Second bath is with olive oil in the water to really oil his skin up.
After the baths, while his skin is still wet, we slather him head to toe with vaseline. Any suspicious spots get elocon. Once (sometimes twice) a day we do his legs, face, and back with triamcinolone, and twice a day we do him with 2.5% cortisone ointment.
We bleach everything daily. Mop the floors with bleach and bleach all hard surfaces. Bedding is washed daily on hot, dried on high, and then frozen. His diapers are bleached weekly. He's getting oral atarax to control the itching.

So what is wrong with him? What did our heartbreak and our hospital stays and our million plus dollars in medical bills get us?
Nothing.

Same weird problems with the donor siblings also.

Severe multi factorial eczema we know. Severe food allergies we know. MRSA we know. Staph allergy we know. Immune deficiency we know. Moderate sun sensitivity we know.

Other than that, we don't know. But right now, things are wonderful. Difficult, but manageable. And he's healthy today.



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[Sandy]

He looks great. I am so glad you have found a routine that is working. Keeping my fingers crossed that all continues to go well.

Sandy mom to Alexander Thor 3/16/02
& Marisa Mia 4/23/05

[mamicka]

I'm so glad that you at least have enough knowledge to make life somewhat normal.

Charlie is *such* a cutie - his skin is truly beautiful!

So happy to hear this update!

Allison

[goodnightmoon]

He looks wonderful!!!! Thank you for the update. You are in the thoughts of many, many moms.

Laura
mommy to Eva Marie 2/16/05

[lisams]

Charlie is beautiful - those EYES!!!!! Oh my goodness, I bet he does a fine job of breaking hearts with those eyes!

I check out your blog once in a while and it makes me so mad that this donor has not been pulled.

I'm so sorry that you have had to go through this. I cannot even imagine how heartbreaking it must have been to go from dr. to dr. with no real answer. Luckily Charlie has 2 dedicated parents who would do anything for him - you both are amazing!!

[bcky2]

i was just thinking about you the other day. look at his beautiful skin!!!! i love the pictures of him, he is just so cute. that is alot of work to do each day but look at him, he is sooooooo worth it :)

thanks for the update.

[barbarhow]

He looks absolutely beautiful. One would never guess the trauma he has been through.
I am thrilled for all of you that he is doing so well.
Barbara-mom to Jack 3/27/03, a Red Sox fan
and Anna 5/12/05, my little Yankee fan!

[Lovingliv]

I am so glad that Charlie is doing so well! He looks great! I was just thinking about him! Hope it continues!

[tina-t]

He looks gorgeous! It is a lot of hard work but he is so worth it.

[bubbaray]

So glad he is doing well -- what wonderful news!


Melissa

Maya Papaya!
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[DebbieJ]

What a gorgeous baby!

Thanks for the update!

~ deb
DS born at home 12/03
2 year check up: 25 lbs with clothes on and 35 inches!
BFARed for 20 months and 6 days
(Breastfeeding After Reduction is possible! www.bfar.org)

http://www.bfar.org/members/fora/style_avatars/Ribbons/18months-bfar.jpg

[candybomiller]

What a beautiful boy he is! I'm so glad to see how well he is doing. Please continue to keep us updated!

[Dcclerk]

What a gorgeous, wonderful boy. Thanks so much for updating us :)

[ohiomom]

Your post is great timing. I was thinking of you this week and was going to search your blog link for an update. Charlie looks amazing. One would never guess it was the same baby, he looks so well now. He's lucky to have two dedicated parents who will do whatever it takes. Hope this is a nice, long "good" phase.

Nicole's Mom 7/03
Joshua ^|^ 5/05
Baby Girl! EDD 7/29/06

[mamato1]

Don't you just get lost in those big eyes of his!!!! I am so glad he is doing well. Your routine sounds exhausting, make sure you are taking care of yourself too!
Chris

Mama to Brendan (aka Boomer) 01/04


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[mamato1]

Don't you just get lost in those big eyes of his!!!! I am so glad he is doing well. Your routine sounds exhausting, make sure you are taking care of yourself too!
Chris

Mama to Brendan (aka Boomer) 01/04


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[kboyle]

OMG, he's soooo adorable! I'm soo happy to hear that something is finally working and that his skin is beautifully baby soft!

Like pp, I was going to do a search so that I could find your blog address, somehow my bookmarks ALL got erased and you were on there.

I'm glad to hear that things are working out!

[kboyle]

OMG, he's soooo adorable! I'm soo happy to hear that something is finally working and that his skin is beautifully baby soft!

Like pp, I was going to do a search so that I could find your blog address, somehow my bookmarks ALL got erased and you were on there.

I'm glad to hear that things are working out!

[bostonsmama]

Wow, what a story! I admire you for the courage to stick with it and get a regimine that can keep his condition under control. I have read a few entries from your blog over the past year or so and I must say that my heart goes out to you. Charlie looks beautiful...what great skin now!

Larissa

We're doing it! IVF orientation & consult scheduled for May 2nd!
Saline Sonogram--May 5th

Proud Aunt to Jack Dorian, born to my brother and SIL on 3/06
http://www.windsorpeak.com/dc/user_files/32719.jpg

[bostonsmama]

Wow, what a story! I admire you for the courage to stick with it and get a regimine that can keep his condition under control. I have read a few entries from your blog over the past year or so and I must say that my heart goes out to you. Charlie looks beautiful...what great skin now!

Larissa

We're doing it! IVF orientation & consult scheduled for May 2nd!
Saline Sonogram--May 5th

Proud Aunt to Jack Dorian, born to my brother and SIL on 3/06
http://www.windsorpeak.com/dc/user_files/32719.jpg

[mamamayi]

What an absolute cutie! Thanks for the update.

[Splash]

My blog is ******sonthethirdfloor.blogspot.com
It is exhausting, but it's more than worth it. Better than what it used to be. And somehow in all that sick period, he managed to grow. Of course he was near 12 pounds at birth, so he's never been tiny... but he is easily in 2T, some 3T. At eight months old. He's a MONSTER!
For those of you who have no clue why all the beautiful healthy skin is so wonderful... I give you some of the before pictures. It got worse than this... way worse... but most of those pictures I won't even look at and definitely am not showing them off. They are for medical reference only.



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[mudder17]

Estelle, I am just so happy to see that Charlie is doing better! I wish you had more answers, but I'm glad you've been able to find a way to help him. I will continue praying for him and for you both, his loving mothers.


Eileen

http://www.mothering.com/discussions/images/smilies/candle.gif for Leah
http://www.gynosaur.com/assets/ribbons/ribbon_sapphire_24m.gif

http://tickers.baby-gaga.com/t/catcatcvi20040222_-6_Kaya+is.png
Kaya will be a sister, ~11/14/06!

[purpleeyes]

Yay! Thanks for the update-so glad things are going well. Most importantly, Charlie looks great! I got all choked up when the pictures came up-so happy to see he looked good.

Beth

[mommy_someday]

He looks wonderful! I continue to keep you all in my thoughts. Thanks for the update!

[s7714]

Thanks for the update! He's such a cutie. I'm so glad he's doing much better.

Jennifer
Mommy to
DD 3/03
DD 6/05

Calling fellow BBB SoCal moms...we'd love to meet you!
http://groups.yahoo.com/group/babybargainssocal/

[ribbit1019]

Charlie looks great! I am glad you found a routine that works. Sounds absolutely exhausting though. But you beautiful little boy's skin looks thankful for your efforts.

Christy
My Waterbabies
Maddy born 6/9/04
http://lilypie.com/baby2/040609/3/4/0/-5/.png
&
Jarred born 3/8/06, 11 lb 14.5 oz 24" @ 6 wks, a happily breastfed babe.
http://b1.lilypie.com/KH1pm5/.png
Co-Owner Ribbit Baby

[Tondi G]

OMGOSH what a beautiful healthy little man!!!! You must just want to squeeze him all the time. His skin looks fantastic.... though you must be exhausted from the routine it's working and thats what counts right! He looks fabulous!!!!! CONGRATS!

~Tondi
Mommy to Mason 7/8/01 and Aidan 5/4/05

[Rachels]

He looks beautiful and perfect!!!

-Rachel
Mama to Abigail Rose
5/18/02
http://www.gynosaur.com/assets/ribbons/ribbon_amethyst_36m.gif
Nursed for three years!

and Ethan James
10/19/05
http://www.mothering.com/discussions/images/smilies/bf.jpg


"When you know better, you do better."
Maya

[karolyp]

You have GOT the most beautiful little boy ever!!! Thanks so much for the update and I'm so glad to hear everything is on the up!

[elliput]

Estelle,

Charlie is so adorably cute. I am just in love with him, as I am sure you and Jean are also! You both are such great Mama's for everything you have done for him.

[dr mom]

Charlie looks beautiful! He was a precious child even when he was broken out all over, but I know it was heartbreaking for you and your DP to see him suffering from that terrible rash. I'm thrilled for your family that you've figured out a routine that minimizes his symptoms.

Thanks for taking the time to update us. :)

I have my fingers crossed for you that he will outgrow the worst of this as he gets a little older...

[Moneypenny]

It's great to see that he's doing so wonderful! Good job, mamas!
Susan
mama to my cutie pie, Avery
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[Zana]

He is absolutely adorable and you both are incredible mamas!

[starrynight]

He looks incredible!! Wow, what a routine to do everyday though, you must be exhausted.

[brittone2]

I'm so sorry that you still don't have the answers you deserve. It sounds like your hands are very very full with doing all of the things Charlie needs to stay healthy.

You are obviously doing an amazing job with him as he is just *glowing* and gorgeous. Seriously, he is one of the most handsome little guys EVER :)

Thinking of you and your family.

[thomma]

Charlie is so damn cute! He looks great! :)

Kim
t&e 5/03

[kep]

That is so frustrating to never get a difinitive diagnoisis. :( But, I am so happy to see that Charlie is so happy and healthy looking! He is such a cutie-pie. :)

Kelli
Proud Mommy to Lukey (4.2003)

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[Corie]

He is just the most adorable baby!! :) I absolutely
love his eyes!

I'm glad to hear that he is doing so much better! I wish
you had all the answers to your questions.

[boys2enough]

Thank you so much for the update. I thought about your Charlie often. He's adorable! So glad that you found a routine that works for you, though you still don't have any definite answers to the questions. Just look at him! :)

Finally, bless your heart! I am tired just reading all the things included in the routine. Hopefully he will outgrow all these very soon. We can all collectively hope. {{{hugs}}}


Cheers, Lin
Mom to 2 wild boys
D 3/98
G 11/02

http://smilies.vidahost.com/kao/otn/pcomputer.gif

[nicoleandjackson]

Estelle (and Jean!)--

Congratulations! As I am reading/writing, DS looked intently at the computer and asked me (in wonderous voice): "Mommy, who is that SWEET baby? He is SO CUTE!" I totally agree! :)

Nicole
Mommy of Jackson 4/30/02


Who's the Biggest Boy? It's Jackson!
http://lilypie.com/baby4/020430/1/2/1/-6/.png[/img][/url]

[hez]

I'm so glad he's feeling & looking better! I wish you had a final diagnosis-- I hope you can learn something more soon.

[KBecks]

He looks fantastic, I'm so glad that you found a skincare routine that is helping him so much.

Good luck in finding a long-term solution, and I hope Charlie is able to stay healthy and comfortable!

[lisaE]

OMG. That is one of the cutest babies I have ever, ever seen.

Sorry for all the difficulties you are going through, that must be so frustrating. :(

[Wife_and_mommy]

What a handsome little guy! So glad to hear the great care he's receiving is helping so much. Thanks for sharing. :)



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