Saturday, March 21, 2009

great news

Jonah did fairly well during his dressing change tonight. Still had some cries of discomfort and LOTS of wiggling and fighting, but after a second shot of morphine (threw up the first), was in little to no pain... just took a while to kick in. He is very easy to dress when he's sedated by the drugs, but I hear rumor that they want Jonah to be on ONLY Tylenol for us to go home. Although I know this is best, I cannot imagine being able to get him still enough to do proper wound care and bandaging on JUST Tylenol. The patch-up jobs we do during the day when he's on Tylenol only are close to impossible and "crappy" at best. And that's when we're NOT having to do his OT exercises (the part he hates the most). Unless a lot changes, they are going to have to find some sort of combo of drugs they feel good about sending him home with if we (or anybody for that matter) are going to be able to do the dressing changes.

But enough about that...

Dr. Ali (Jonah's dermatologist) had left a message on my phone at some point today. I didn't get it until about midnight. She said that she had faxed all of Jonah's biopsy results to Dr. Fine (Vanderbilt specialist; EB extraordinaire) yesterday, and after looking over everything, he said that he is very, very (maybe only one "very"... I can't remember) optimistic that Jonah has the NON-HERLITZ form of EB. This is VERY good news. Praising God like a mad woman. Trying not to dance around the room. (More because our room currently looks like a tornado just passed through than a dignity thing... I have no shame). I thought you guys were just praying for no infection. Very sneaky... very sneaky.

Here are a couple pictures of a very cool jacket-sleevey thing we tried to rig up for Jonah to help keep his arm bandages on. It's one of a pair of leggins (Thanks, Aunt Amy) made out of a very, very soft, silky material. We cut two little slits in it, so now he's wearing it across his back and on his arms. It's pretty loose on him and stretchy, so it may do no good, but worth a shot! I don't think it will cause new blisters, but who knows???

Don't be jealous that Jonah rocks your socks off. No worries. You guys are cool by association.


A few questions for my EB peeps (if you don't mind):

1 - What kind of pain meds did you go home on and how did you keep your baby still to do OT and dressing changes? (For me it's less a pain issue - although of course I don' t want him in pain - and more of a sedation issue as far as needing him to be still - or at least manageable.)

2 - How do you keep the top of his bandages from rubbing new blisters on unblistered skin? We try to keep the Vaseline gauze wet with Aquaphor (the Stanford video says the leave some gauze sticking out the top, so the Curlex (sp?) doesn't rub), but he always seems to have new blisters right above where I stopped the bandage the previous night. I tried a thick strip of mepitel around the top tonight, hoping it will stay more moist than the Vaseline gauze. (We are back to Vaseline gauze because that's what they use in the Stanford videos... I'm not sure what they didn't like about the Mepitel/Mepilex... whatever it was. I'm sure it's just trial and error figuring out what keeps the most secure).

3 - Any easy diapering solutions? It's not going to be practical to cut the elastic out of diapers and let him just lie on one once we get home. Having to change his sheets/blankets all the time and redress/patch up his leg bandages because of urine and stool are not practical options for once we get home.

(You can comment here or email Jonah's address if you want... THANK YOU so much!!!)

Seeing as how it's almost 2 am, I should probably go to bed. Thanks again for loving Jonah so much and praying over and over and over again. We are encouraged by tonight's news, but are still dealing with the possible infection issues. GO ORAL KEFLEX!

Hope everyone has a great weekend.

80 comments:

amber said...

yay! What great news! I'm so glad for you guys! Will be praying about the infection issues!

K said...

I think you need to look seriously at options in cloth diapering. There are many, many different kinds and so many people making them that I'm sure you can have them tailored to your son's special needs. Fabric is SO much softer than the disposable diapers and there are many different fibers to choose from.

At the top of my mind comes doe skin, which is a synthetic fiber, actually, and supposedly very soft and absorbent. I've always loved cotton but I thing it may be too abrasive for your son, especially when wet.

There is also a special gizmo, I can't remember the name, unfortunately, that is hung on the wall above the toilet. It's like one of those fold-down changers that restaurants have only with a drain hole so that you can attach a sprayer to your sink or tub and put the baby on this gizmo for diaper changes and spray the poop off instead of having to wipe. The waste water then goes through the drain and lands in your toilet. I think it was actually intended for bathing a baby but I can't remember.

Back to the diapers: There was once a time, about 32 years ago, when disposable diapers didn't have elastic and neither did cloth and millions of mothers put them successfully on their babies.

As for a waterproof cover, I think that a super, super soft wool soaker (that's what they are called) would be better than any synthetic fiber because the synthetic fibers are too sticky and elasticky.

Wool "leg warmers" might also work great over light bandaging, too, using the same idea you've got on your son in tonight's picture. I'd suggest a super light-weight fine wool. Wool breathes and is naturally anti-microbial. It's a fiber that is cool in summer and warm in winter. I imagine that keeping your son from over-heating is important as is not keeping the wounds too hot where infection can breed.

Please feel free to email me privately if you wish. I am a baby clothes pattern designer and would be happy to help you with your diaper dilemma. My pattern for cloth diapers is a great world-side seller but I think you need something special for your son. kimi@newconceptions.com If you email me a phone number I'd be glad to speak with you, too. I offer my skill as a gift to your son.

I'm a mom in waiting myself, adoption from China. Look into Elimination Communication, too, since the sooner your son is out of diapers, the better.

Jenny said...

Praise the Lord! I am so happy for your news from Dr Fine - this is so wonderful!!!! We are continuing our prayers for you all here in Perth, and was wondering about the little sleeves that you have on Jonah's arms, I don't know much about EB except for what I have read on your blog but was wondering if something could be fashioned very similar but out of 'minky' to cover his bandages, this might stop him from pulling them off and also as minky is so soft it would be comfortable and soft on his skin... As I said, I don't know much about all this and the bandages may need to breathe so I could be completely wrong here but I have been thinking about this every time I see pics of his arms. If I could get to you I would try and measure him up and works something out but it is such a long trip LOL, but you probably have lots of sewers in the family who would love to help. Anyway, just a thought. Take care of yourselves and will keep praying and thinking of you all.... Kisses to Jonah xxxxooooo
with love
Jenny and Doug

Anonymous said...

I have zero experience with EB, and I agree with K that perhaps cloth diapers might work...but if you do want to go with disposable - is there something you could put between his skin and the elastic that would stop it cutting into him?

Marie

Brandy said...

What wonderful news! GOD IS GREAT!! :) praying that sweet Jonah continues to heal, and that the bandages don't cause so many blisters, and the sleeve thingy works, and that you and Matt continue to wait on the Lord for all you need :) and praising HIM for every small step of improvement! Much love from the West coast...
Brandy

Mary Dunbar said...

What wonderful news!!! We love you Jonah!!

Mary w/triplets!

Anonymous said...

Every tidbit of good news, every hint of hope, every creative method of helping Jonah (and thereby Mommy and Daddy) shows me what a fighter Jonah is. He is determined to beat this thing as much as he can, and he is trying his best to show his caregivers what to do and when to do it. I praise God for his determination. May you continue to see these tiny but important bits of progress; I pray that his will to survive grows as much or more than he is growing. Jonah is a beautiful child. May God keep on adding His blessings.
Sandy Widener

Lisa Worthington said...

After the last few days of emotional turmoil, it leaves me beyond joy to hear this wonderful news from Dr. Fine! Praising God a million times over. This weekend I will pray that the oral Keflex knocks any infection right out of little Jonah's body. Also praying that you will find what works for Jonah as far as pain medication, diapers and successful dressing changes/OT sessions. I wish I had advice, but all I can offer is continued prayer and emotional support. We love Jonah and we love his family, too! Hoping for a weekend even more perfect than last (despite the WFU loss last night...:-()!

nancy said...

This is the best news I have heard about baby Jonah from the beginning! All of the other things, dressing changes, diapers, OT and PT will work itself out. If he indeed does have the Non-Herlitz type of EB, we just Praise God! Jonah is such a fighter inside and out, so you could have your hands full no matter what solutions you come up with when you take him home. He has already formed this "I will not let this disease get mt down or stop me from anything" personality! I just feel in my heart that he is going to grow up to be this amazing, strong-willed person who beat the odds of this disease! With parents like you and Matt, how else would he grow up, but STRONG no matter what direction this disease takes him?
I am so humbled that we are witnessing that prayers are lifting Jonah up to HIM. Gabe is up in heaven and is working on HIM as well as the angels he is playing with. Gabe is sending words to his brother everyday, saying fight Jonah, fight! AND INDEED HE IS!
I just love his new look! We never know what we are going to see him in next! I mean how many babies get to sport clothes like this?? I love it!!!!!!!!
Hope today is a great day for all three of you:)

Anonymous said...

God is good !! Now to healing the infection
We are praying around the clock !! We love you Jonah
We have comfort knowing he is under the care of the "Great Physician"

Anonymous said...

Jonah is such a trooper! I'm still thinking he's a rebel that's going to defy everyone's expectations (in a good way, of course). First the mohawk, now flames on his arms...

I'm a non EB mom, but would have to agree with a previous poster that it you can get a private Peds room, that would be so incredible for you and Jonah's care. It worked WONDERS for my son (and me too). Also, Motrin seemed to be a bit more effective for my son.

Patrice, do you ever sleep? I'm equally amazed by your strength. It's no wonder where Jonah gets it from. Continuing prayers from MN. No more infection. Dawn M.

Anonymous said...

I was so happy to hear your good news! I will continue to pray for improvements.

I don't have experience with exactly what you are going through, but my son (who is now 1) has received PT and OT since birth. I can relate when you say that Jonah's OT exercices are so tough. I used to cry while my son would wail through it all. Just know that it will get better. Their little bodies get used to it somehow. I know with Jonah's skin you face other issues but children are so tough and resilient!

Tracy said...

Don't have any EB experience, but agree with what other people have said about cloth diapers it seems to make sense. Check out MckMama's site if you haven't already, she has a big post dedicated to cloth diapering today!!

Sounds like you have had some great news today, awesome to hear the baby steps you are taking on the road to going home!!!

www.asthestueweworldturns.blogspot.com

Tracy

kimmie said...

yay patrice! (and jonah! and family!)
~kimberly (randolph) waller

Melissa said...

Jonah, you are the man in those flames!!!! Guys, the news from Dr. Fine is wonderful...I am so thankful that he thinks it's the Non-Herlitz form. I hope and pray that little Jonah is on the road to getting better and better, and that one day soon (I know, still weeks yet, but that's sooner than it sounds) ya'll will all be home together and sleeping in real beds and playing with Deac. {{Hugs}}

Katie said...

Ok, here are my thoughts on your questions. I hope this helps.


1) We had to slowly wean Ella off of morphine when she was in the hospital too (she was there for 34 days). Now she isn't on anything (at 21 months). When we brought her home we would do tylenol and that was it. As soon as the initial "deep" blisters heal then they don't seem to hurt as bad and are more managable by tylenol. Also, you will be SHOCKED at the high pain tolerance your little boy will develop. Sometimes it scares me what doesn't hurt Ella. When Ella was in the hospital and when we first got home we used sweeties (they have them...it's basically sugar water) to keep her still. We would dip her pacifier in the sweeties and she would suck on that. When the sweetness was gone she got another dip. Now we just let her suck on her bottle. My attitude is that this little girl has to endure so much and if having a bottle helps her dressing changes more tolderable, then I'm going to let her have a bottle.


2) We had to change the tubular dressings in order to find ones that don't give her new blisters. The surgilast (That looks like fishnet stockings) was way too rough on Ella and caused so much more damage than it was worth. We stick to tubifast (made by the same company that does the mepilex) and it's soft enough that it doesn't give her new boo boos. A lot of parents will leave about a 1/2 inch extra of mepilex transfer (more thin and pliable...we prefer it) at the top to pad the end of the surgilast.


3) Diapers were also a major problem for us. We tried every diaper on the market, and that's not an exagggeration. The Pampers were the worst and caused the most problems. Ultimately we went to Fuzzibunz cloth diapers and they were lifesavers. It's basically a diaper with a fleece lining. We got our from Leslie Rader (with Debra) since they are really expensive. If it doesn't gross you out I would be happy to send you ours from when Ella was a baby. Now she wears Huggies and only Huggies. She has a few very minor problems, but for the most part they are fine without any alterations.


And for one more comment, Ella had to have a broviac. I know that this option really scares you, but they tried EVERYTHING for Ella to avoid a broviac and in the end it was the best option. It was secure and she was able to get he antibiotics that she needed. I won't lie, it left a big boo boo on her chest when it was removed, but at least she was able to get the medication she needed.

There are my thoughts. I will also email them to you.

Katie Mom to Ella, RDEB 21 months old

Anonymous said...

Praising God with you today!
-nicole

Holly said...

Praise be to the LORD! We will keep sending up prayers for no infection from Georgia.

Jalita* said...

Cloth Diapers!!!
I would be more than happy to send my small stash to you since we arent using them anymore.
I actually have a post on my blog dedicated to cloth diapering, and you could see pics of my son in different ones.

Anonymous said...

I don't have any EB experience either, but I have to say "look into cloth!" as well. My kids have some that are fleece, and they are so soft, but I would think you could make them out of any material that would be good for Jonah. There are patterns for traditional covers and prefolds online, which could be tailor for his needs pretty easily. I hope the search for a diaper ends soon and with perfection being found. The things we all take for granted when bringing home a baby!

Lauren said...

between the mohawk and the flame sleeves, jonah's just got it going on. i'm so glad he had a better day and i hope that it continues, that the infection will heal and the oral meds will kick that infection on out of his system!

i was also going to mention mckmama's diaper post, but i see you've gotten that memo a couple of times :)

praying for you constantly.

Baby Bird said...

Our God is an AWESOME GOD! Praise His name for more clarity in Jonah's diagnosis!
I love his sweet arm warmers:) Hope they work. Also praying for wisdom with bandaging issues...and his meds!
Hope that you and Matt have a beautiful day today!
Love & Hugs! Aimee P.

Zack Troop said...

He really does look cute with his new clothes. Zack tolerated dressing changes on tylenol, but like Katie said he has developed a very high tolerance for pain. Disraction has always been the best help for us, Weather it was music, tv or another person.

I think that Stanford uses vaseline gauze because it it cheep and insurance covers it, as with the mepi products they are very expensive and insurances will try not to allow it, but in our experiance they are worth their weight in GOLD. As soon as we stopped using vaseline gauze Zacks wounds and surrounding areas improved DRAMATICALLY! I will still rarely use it because Zacks skin requires change, but only in our extra dry months here. Same goes for the aquaphor. Petroleum doesn't really allow for wound to get the oxygen it needs to heal. Also like Katie said we use mepilex transfer under the top of gauze to prevent it from cutting in and we never use curlex, it was just way too rough and did not alow for flexability. BUT this is just what works for Zack, and everyone is so different.

rameelin said...

Thank you Jesus! What an awesome God we serve! Patrice, I cannot believe how great he looks! I mean, I can..but you know. It's like looking at a whole new baby in these pictures. What a great testimony to the greatness of our God who is concerned with the fine details of our lives! We are praying for you guys! No infection in the name of Jesus!

Molly said...

I posted this a couple of days ago, but since you asked I will post it again. :) My niece had JEB, my SIL had LOTS of success with a cloth diaper called "thirsties" the specific type were Fab Fitted, by Thirsties. They were amazing and her derm was sooo amazed at the success her bum showed.

They are lined with an amazingly soft fleece and they are SUPER absorbent so at this age Jonah wouldn't need covers yet, and besides they always thought it was better to know when she was wet immediately anyway. Oh and they are super cute.

Here is a link where I purchased some for them http://www.diaperjunction.com/store/pc/viewPrd.asp?idcategory=5&idproduct=1573 the more you buy the cheaper they become.

I will forward your other questions on to my brother and SIL and see what their insight is.

Praise for sweet Jonah! He is doing great.

two red heads and two brunettes said...

He looks too cute in his new cool dude wear!

michelle said...

Praying y'all get everything figured out just right for Jonah. Also praying for the keflex!

Cristi said...

Wondering if you could try some of those fuzzy socks they sell for women and cut the toe out. The heel part could be at his elbow. Might work for over the bandages. ???

Janel Waters said...

OK - I am not an EB mom, but an EB sufferer - so from Jonah's point of view - the pain is very tolerable once you get him off the meds - slowly wean. Only use Tylenol, Motrin causes bleeding and ultimately if over used can cause stomach ulcers and other serious problems (speaking from experience!)

I have also had problems with Aquafor and Vaseline, I use either steroid cream or antibiotic ointments and I only use Mepilex lite or transfer. It is very thing and flexible and comfortable to move in - its not binding or scratchy or anything. And even though its adhesive, if you just wet it, it falls off without problems to the skin.

I know that your biggest concern is for his level of pain, and I know that it is very difficult to understand how these sores don't really hurt us. But, when you are born with it, your pain threshold is much higher than normal. Its uncomfortable, but not really painful all the time. I usually don't bandage during the day and leave my sores open to get air and heal. I also found (and this is just me) that my sores heal faster when dry, not wet. I will even lay in the tanning bed to dry out wet sores. (ultraviolet light therapy).

They sell leggings at Target that is so CUTE and I think they might be perfect for arm warmers too!

BTW - he looks FANTASTIC!

Just Me - MJ said...

SO happy to wake up to encouraging - no, incredible! - news from you about your sweet little one! He looks positively angelic - so precious! Yay for the diagnostic news! Still in my prayers; hoping for no more infection, fewer blisters & easier days ahead.

Anonymous said...

hI...cloth isn't as hard to do as it may seem.. I don't have EB experience but we cloth diapered my daughter and it was great. Fuzzi bunz and Blueberry diapers were the best for us. Fuzzi bunz only have a little bit of elastic in the back and snap in the front. the insicde is fleece and the absorber part is microfiber.

Check out www.diaperswappers.com

it a an awesome community that
will help answer your questions. Resell of diapers is a big thing though it sounds unsanitary we bought and sold lots of times with no problems. It is worth looking into you only need about 14-20 to get you started and then you don't have to buy till the next size and most stay in mediums until potty trained so it is very cost effective. There are tons of options but I think the easiest for you would be to look at pocket diapers or all in ones.
But definalty check out diaperswappers.com that is the best one stop place to find information as well as some diapers to try.

Carrie

Karla said...

All I can say right now is "yay"!!!!!! I continue to pray everyday for you guys. This is great news.

Anonymous said...

I hope your doctors and social workers at the hospital have discussed Medicaid and Social Security benefits with you by now, but just incase:

1. Jonah should easily qualify for Medicaid (in some states called Medicaid Wavier). Even if you have great insurance please take advantage. They can cover all sorts of things and have very few restrictions on physician's orders (dressing supplies, cloth diapers).

2. Jonah should qualify for social security benefits (up to about $700 per month) based on current income.

3. When he is discharged, the federal and state government provide free OT/PT and other needed services via Early Intervention. It is always a good idea to contact your local health department to discuss evaluations and services. Coming out of the NICU will automatically qualify him to start services ASAP without a time delay or cost to you.

Over the years I have worked with many families that have been driven to the brink of breakdown and bankruptcy because they paid scads of cash out of pocket for services that should be free.

Your tax dollars and mine pay for all of this. Please take advantage of these programs to save $ and cut the stress! Jonah continues to be in my thoughts and prayers!

Anonymous said...

You should be dancing...such wonderful, exciting news! Jonah really looks good. Praying that you have a relaxing weekend loving on your precious Jonah!

Gail
Annapolis, MD

maurerjen said...

Patrice, I was reading through the comments, and it looks like lots of great ideas for the cloth diapers. It seems like most of the diapers that people are recommending have elastic, though. Maybe you'll have to do pre-folds (which are the ones that have been traditionally safety pinned, but i think there are some new gizmos that you can get now). If Kimi could figure out a pattern for diapers for Jonah, I'd be glad to make some for you out the softest material we can find.

maurerjen said...

PS - as long as you're breastfeeding, you don't need anything special to get the poo off. the poo of breastfed babies is water soluble, which means it dissolves in the washing machine. i promise - i've washed a load of our clothes right after jude's diapers, and they were perfectly fine.

And here's a link for the fasteners that can be used in place of safety pins to fasten pre fold cloth diapers :http://www.kellyscloset.com/Snappi-Diaper-Fastener_p_2722.html

Amanda said...

Hooray, God! Hooray for the good news on the form of EB (and hooray that you sound encouraged. :)). Peace to you, Matt and Jonah.

Amanda
(Oregon)

P.S.
Jonah, your new "arm sweater" rocks. ;)

Melissa said...

I work at at daycare and one of our parents use cloth diapers. But they are unique ones..Thay are called Fuzzi Bunz. I gave you the link to them. They are soft and the elastic is not like cloth diapers. I hope this helps.. :)
I found your web site through another site that I follow. I hope your little guys gets better..
www.fuzzibunz.com

Katherine said...

I just don't know when I've seen anything cuter than that. :) I'm so thrilled to hear that there was good news today, and we continue to pray!

I have a friend who used Fuzzibunz cloth diapers with her kids (non-EB), and they seemed super-soft. I see that a couple of other people have recommended them, so maybe they'll work for Jonah.

We love you so much and hope to see you soon!

Jennifer said...

Here is what we have done for Layla the last 2 months that has helped:

Pain meds - she went home on Oxicodone (sp?) and Tylenol. We used the oxicodone for about 2 weeks when we were home - it settled her a little bit, but unfortunately they are babies and no matter pain or not, they don't like to be messed with. We found for bandaging that bigger pieces wrapped around worked better. We were able to stop the oxicodone and she actually does pretty good on the Tylenol. I think she is getting more used to the process - it just takes time.

For the upper arms and legs, I found wrapping a strip of Mepilex Lite or Transfer at the end of the bandaging helped some. Also, stopping the pro-net short of the mepitel and using the tubifast to cover it all (Tubifast is softer).

For the diapers - we actually put a cloth diaper inside a disposable diaper so the cloth diaper is hanging outside of the disposable diaper. We then just make a cut in the inside elastic. It holds the poop in good, some pee will drain out, but pee is sterile so we are not as concerned about that. The cloth diapers inside have really helped with the blisters on her thighs.

I would be more than happy to share any additional information on what has worked for us.

Thanks,
Jennifer in Wisconsin
Mom to 2 month old Layla with EB

Brooke said...

Praise God for non-Herlitz!

I cloth diaper my boys and have tried many different types of cloth diapers, so I know most of the fabrics available. I would love to help you find something that will work well for Jonah, if you'd like someone to do research etc. You can email me at lovemetondeurAThotmailDOTcom.

Brooke

YoungNaNa said...

www.mycharmingkids.net just did a get posting on cloth diapers. You might want to check it out.

Praying for all of you! He is just too cute!!

Melissa said...

I just wrote about he fuzzi bunz diapers. If that is something that you are interested in i think that the used kids store here where I live has a couple I know the owner and I could get you a couple if you would like to try them with out spending alot of money on them right now. Le me know..
kruger.4@hotmail.com

Molly said...

I have sent you an email, I forwarded your questions on to my Brother and SIL and they responded with a ton of great info. (too long for here I thought)

With my niece having had JEB, we are praying for Jonah, he holds a special place in our hearts.

Molly

lov said...

LOVE those sleevy things!

Sara said...

My daughter was never on anything other than Tylenol. It took 3 people to change her bandages till she was about 3 months old, then it became easier for just two and then eventually I was able to do them alone. Those with EB have a HIGH pain tolerance. My daughter is now 6 and NEVER takes anything for pain and we have to force the Tylenol down her when she has a high fever. I just learned to deal with her moving around and fighting me during bandage change. Unfortunately it doesn't get any better as they get old. They just get stronger:) But now she understands WHY we have to pop the blisters.

The new Pamper Sensitive diapers are super soft. We had to wrap our daughter upper legs, and thighs with gauze every day till she was out of diapers to keep the diaper from rubbing. (there are pictures on my web site www.garrettshouse.org)


Cloth diapers did just as much damage.

Vaseline is much too rough for EB skin. It dries out quickly and causes a lot of damage We like transfer much better and it healed the wounds quicker We too also left some of the transfer out of the gauze so the gauze didn't rub against the skin.

Some at Stanford is very 'old school' when it comes to EB. And up until 6 years ago there wasn't mepilex products, so anyone older than 6 started out using Vaseline gauze and some just couldn't make the switch.

Another poster mentioned steroid cream. Its best to avoid that and only use is for short periods when necessary. It has terrible long term side effects-thinning of the skin, loss of bone density, it lowers the immune system, which increases the risk for infection- are the three I can think of right now.

Hopefully his infection is just a little one:)

momma said...

praise God!!! still praying for no infection!

Martin Family said...

Sounds like some encouraging news from the Vandy doc! What a trooper Jonah is! And his mommy and daddy too!! And I have to say, his arm "warmers" are WAY cool!

Anonymous said...

Hi Patrice,
I am so glad he is doing better, my granddaugter was born with RDEB she had some really bad places on her legs and feet they only kept her at Duke for about 5 days we had to show them we could do the bandage change by ourselves and as most parents and grandparents we felt neither Alyssa or us were ready but we had not choice. She went home on Hydrocodone and Tylenol I can not remember the exact amount but we would give to her about 30-45 minutes before bandage change, once the bad areas started to heal we only would give her Tylenol, now we do not give her anything. We used the Vaseline gauze with aquaphor until we heard about the Mepilex lite it is great. We are in China Grove about 1 1/2 hrs away, please feel free to call anytime 980-521-8761 my name is Sandy. Thinking and praying for you all!!!
P.S. about the diapers we use the Pamper Swadlers they were about the only thing that would work for us.

Anonymous said...

Hi,
Its Sandy in China Grove, sorry I told you it was Hydrocodone she went home with but it was Oxycodone....

Millie said...

Go ahead and dance around the room, you are entitled too. :)
You got amazing news! I was wondering about cloth diapers also, but I have NO experience with cloth diapers or EB, so I offer little support except for my prayers. :) Loving the pics.
Millie and Colin-HLHS

Anonymous said...

many people have mentioned cloth diapers. mckmama is having a huge cloth diaper give-away (http://www.mycharmingkids.net/)

I left a short message giving a tiny glimpse into your story and asking that she consider yall for the diaper prize. just wanted to let you know!

sarah

Anonymous said...

So glad to hear you got some good news. What a blessing. Still praying for Jonah.

Anonymous said...

Hi! My nephew has RDEB and he always used Pampers Swaddlers. They used lots of Aquaphor around the waist and always used a size or 2 bigger and it worked great!

HOpe that helps.

Megan Lynn said...

Just caught up on Jonah the past couple days and cried and laughed and praised Jesus with y'all, Patrice.

Praying and reminded of Oswald Chambers: "Prayer does not equip us for the greater work, it IS the greater work." Praying this to comfort YOUR heart in the hard mommy moments.

I love you Patrice--fighting with you in prayer.

Meg

Miss Cook said...

the flames definitely rock :-) he is so handsome...and a little edgy - i like it! (and you know how i am about fashion).

more importantly, that is FANTASTIC news about the diagnosis! we will definitely pray about the infection issues, and celebrate your victory today! :-)

Jane said...

Praise the Lord!!!! That is great news. Continuing to pray for all of you. Will let your EB peeps continue to answer your questions, but just had to pop in to say I am definitely smiling and dancing with you. You go Jonah with your strong self. (Love his new wardrobe) May God Bless each of you

I'm The Momma, That's Why! said...

Great to hear the good news!

Don't ya just love the blog world! You ask for prayers, you get them! You ask a question, you get asnwers! You get good news and the whole community celebrates with you! You have just about the cutest baby in the world - we ALL fall in love with him!

Have a wonderful Sunday!

Grannie in Florida

Beth said...

You go and dance girl!! We are all dancing with you!! What great news!!

I had a migraine yesterday that lasted until 6am this morning. I kept waking up from the pain and every time I woke up I was praying for Jonah. I think that someone else posted the other day about doing the exact same thing!

I know HOW good God is!! And he is willing us to pray for your sweet boy! Prayer does work, HE does hear all of us, He DOES hear you!! It is amazing really!

Praying for all of your specific requests and that there is more good news in your future!!
:)

Alisa said...

So glad you are getting good news. Still praying...

Watts Family said...

FIRE UP!!! Love hearing the great news!! Jonah is the little rock star and he is going to get through all this...I know it. Thanks again for always keeping us posted...Give him lots of hugs from all us Texans!

Many Blessings,

Amanda

Michelle in Va said...

Praise God!!!! What an awesome God we serve. God does answer prayers. Praying continually for sweet Jonah and you and Matt and your families. It was so uplifting to hear you sound so encouraged. I cried tears of joy when I read your post tonite. Jonah looks so good. His pics show so such an improvement. Praying that God heals his infection and the oral antibiotics do the trick. Continuing to pray for Jonahs healing and continued improvement.
With love to you and sweet Jonah

Chris Hilton said...

Comment from one of these photo's posted on the Facebook Support page by a grandfather biker friend from Jonah's grandmother's past:

"So Cute, looks like Harley flames on his arms :)"

Don't tell her I shared this. We could get a Harley Davidson Sticker for his crib to go with his flames. Let me know and I will go visit "Curley". It's not only Mommy's reading this blog!! The tough guys probably cry more, we just don't share with you.

Amy said...

Hi Patrice and Matt-I just sent Jonah an e-mail. Hope he grows up strong to get to read it someday after you have read it an all the many others to him over and over. :) Love, Amy (and Jacob too whose asleep in his car seat-born Feb. 13th)

fulksfam said...

I've seen a lot of people recommending much softer options of cloth diapers, but we have some "gdiapers" that a friend sent for Casey; we were going to wait until his poop was a little more solid to try them out, but he has already gotten too big for them. So I will send them to you guys instead - the packaging is open, but we haven't used them, not even to try them on him, I promise! If they don't work, that's fine, you can at least see how they'd work. And if they do, great! I think the elastic around the thighs might not be so great for Jonah, but like I said - at least you can try something out and see if it works.

(Should I send them c/o your church, or to the PO Box?)

Also, MckMama is giving away a ton, as I'm sure you've heard, and I saw someone here mention that they left her a comment about you guys... so I copied her. Maybe if she gets enough of those comments, you'll have a plethora to choose from!

Love you guys, praying so much, and hoping to visit when Casey and I come home for CBC in July! - Fulks fam

Joy said...

Hi Patrice. I saw your blog through a link Molli Falgout has on her blog page. I just want you to know that I will be putting little Jonah on our prayer list at my church tomorrow. My heart aches for you. Please know that you have another prayer warrior for Jonah.

Aunt Joyce said...

Matt & Patrice - If our "sneaky" prayers could get a probable Non-Herlitz diagnosis, then I'm sure that all of our "non-sneaky" prayers can get rid of whatever infection exists with nothing but oral meds. Go to sleep and sleep tight knowing the God is watching over Jonah.

Love you to Heaven and back,
Aunt Joyce

Anonymous said...

hey you two--i havent written before now but i work with matt and have been following this blog every single day since the thursday before jonah was born. i'm hooked on it. i've prayed so much for him. my own kids and family ask me about him daily. Every single day i give updates and me and my sister email one another and we cry and pray for him over the phone. Matt and Patrice, I love this boy and he's a trooper and i love seeing photos of him. I too, want Patrice and you to take this wonderful boy home and lie him in that bassinet next to your bed and later that crib upstairs---i know it will happen. I pray and pray and pray for a miracle for him, because he deserves it and so do the two of you. God Bless You--Much love from Robin Shoemaker and my kids and my family......

Misty Rice-Baniewicz said...

Oh you got me all excited over here.... love the humor you have on top of everything. That is VERY, VERY, VERY good news about our little man. No matter how many times she said "very".... its still a VERY good thing to hear.

God Bless.

Anonymous said...

Hi Patrice,
Mck Mama just did a whole post on cloth diapers. Those might meet some of your needs, especially the soft wool covers she has posted. I hope you find a great product for Jonah.

Stephanie said...

Awesome news on the diagnosis!!! and for a smooth dressing change! Continuing to pray for Jonah and you both!

When I saw the leggings on his arms...I thought of baby legs..they're alittle tighter so might hold the bandages on alittle better. Might be too tight though I have no idea. Just a thought :)

DaNella Auten said...

I don't know you, but i am praying for you. I wanted to provide you with some hope, and nothing I could ever say could offer anything more than you already know. However in my looking, this is what gave me the most hope,I ran across this site.
http://www.debra.org/modules.php?op=modload&name=PNphpBB2&file=viewtopic&p=11032&sid=bf09ce9d0b46c10ea943861f5debbf00

and a post on that site said... "I am 50, and living with EB. My personal email is
bobcollins50@hotmail.com . You can reach me best this way if you feel the need to talk about any issues concerning EB. By the way I am married with to kids. My daughter is 18 and my son is 24. Neither one has EB." I hope this helps some.

DaNella

Anonymous said...

He looks so darn cute and content. I think I have looked at the pictures...oh, about three or four times today.

I hope you are taking care of yourself. The more you take care of you the more you will take care of little Jonah. I worry about you sister!!

So, I think I will take one more look at that precious little baby.

Kimberly
WI

jaime s said...

WOW....73 comments already! I wish I had some EB tips for you. All I can offer is a place to stay if you ever need to bring Jonah to Vanderbilt. We are friends of Peyton and Amy's (from our Fairfax days) who recently moved to Nashville. You're welcome for as long as you need to stay when and if you need to come this way!

You also have our prayers :)

Alison said...

PRAISE PRAISE PRAISE!!!!! So happy to hear the positive report! Still praying for your sweet son....

Blessings in abundance,

Alison

fulksfam said...

OK, so I just left another MckMama comment using my other blog name, and seriously... people are amazing, actually going back and RETRACTING their requests and asking her to give them to Jonah!!! God is SO GOOD!!! And I will get those gdiapers in the mail to Jonah's PO box in the morning!

Anonymous said...

Be extra careful with the tylonal. That goes directly to the kidneys and will in time damage. Not trying to bring back news, just cautious. Is IBPROPHEN an option? That is not so hard on the kidneys.
I was up at 12 praying for little Jonah! I do not know you, but was sent to your site to pray, what a blessing to have God on our side. What would we do without HIM?! May God continue to give you strentgh and the peace that endures all understanding. Will be continually praying for your family.
Becasue of Chrit's love to us<
Brenda
WI

Ruth said...

So glad to hear the good news about Jonah!! He's a tough guy, your boy.

If you do go with cloth diapers, wool soakers would be an effective, soft cover. Here's a link to an Etsy seller that makes them: http://www.etsy.com/shop.php?user_id=5561898

Tamra said...

MckMama just linked to your site as Jonah is the winner of her stack of cloth diapers. Congrats! I am in awe of your strength being a mommy to two precious boys...what a calling by the Lord! I love the verse you used in your Sat. March 21st post from Isaiah 40. I quoted that to my husband (then fiance) during his chemo treatments for cancer and our minister read it at our wedding ceremony. I will be praying for your family and may Jonah's homecoming be a blessing to all of you! May Christ continue to provide you emotional, physical, and spiritual strength!

Anonymous said...

I am a NICU nurse and have seen first hand the struggles and heart ache of parents whose children suffer from EB. I rejoice with you in the fantastic news you recieved from your doctor. Jonah is absolutely precious and the love and care you so obviously have for him is beautiful. My thoughts and prayers will be with you. Continue resting in the arms of our mighty God and allowing Him to comfort you and be your strength. Also, remember to lean on eachother and allow your support system to help you so that you will have time to be together and be strengthened as a couple.
Blessings!
-Nurse Holly in FL