Sunday, March 1, 2009

quick update

I just want you to know that we are working through all your comments, and we want to thank you so much for how much you care... just because. I also want to let you know that if you have experience with EB and are passing along suggestions to us (type of bandages, feeding suggestions etc), we are working hard to read and summarize the info and pass it along to the doctors. They are being very receptive to our suggestions. Don't panic! We are reading them - but with visitors, phone calls, pumping, feedings etc, it sure does seem to take a while. The comment moderation is on because of some past bad experience with some very horrible comments by a stranger who randomly found us after Gabe died. I'm just not willing to post them until I've read them. So, please leave comments! We'll get to them eventually, and they are such a blessing.

And for all you EB moms and medical peeps, please keep giving us advice. He's 8 in a million. We can all use the education. The doctors are just as interested in the suggestions as we are. THANK YOU! You are helping save his life.

52 comments:

little_ragamuffin said...

Patrice, I am praying for you, Matt, and baby Jonah. So much love to you all...

Meagan said...

I am praying for you and Jonah everytime i have a spare moment. I have linked you onto my blog, not that anyone reads it, but hey, you never know...

God bless and i pray that Jonah gets better and can live a normal life...

nowamomoffour said...

Hello Williams Family! I just want you to know that I am lifting up your precious baby boy to the throne of the Lord who created him! I am thinking of you guys many times throughout the day. And I am only ONE of the hundreds of thousands of people praying for you. You are on facebook, twitter, and blogs by women with over 4 million hits! We are all cheering you on and praying that the God of all peace will enter into your hearts and give you peace. We are also praying that the Lord will heal your sweet son and that GLORY will be given to HIM, because you are faithful. When you feel discouraged and as though you can't pray...just know...we are all petitioning on your behalf!!! We are with you...and so is HE!!!

will dorsett said...

hey its will dorsett, i just wanted to say that i am praying so hard for you guys, and i and so sorry for all that is happening but glad that God is in control and is helping out in anyway that he can, i just hope that through all that happens you can keep the faith, i know that you both know that God loves you both and jonah, and that he is Gods child also and that God only wants whats best. I am praying that the best will come from this.

The Foster Home said...

Just wanted to stop and let you know that I am praying soooooo hard for your precious baby boy, you and your husband, your family and the doctors and nurses that care for your baby. I have put the "praying for Jonah" ticker up on my blog to get the word out and the prayers going.

justjuls said...

I'm a friend of Jessie Fulks, and I'm praying for you. Doctors do their best but are often wrong, so I agree that a diagnosis should be made later rather than sooner and even that is never a final "verdict." I have had this happen in my own life where! :)

*Hugs* And what a blessing you have in Dr. Block! It's so rare to find one with such real compassion! The Lord def gave him as a gift to you at this time!!

avbernat said...

Shame on that jerk who left those horrible comments.

As for Jonah, I'm constantly thinking and praying about him. I'm not very familiar with EB but if I ever hear about anything pertaining to it I'll definitely send info to you.

Much love from California, tender kisses to your sweet baby. I will also be putting your button on my blog and be sending out emails to my close friends and family for extra prayers.

karina said...

Patrice,
Jonah is in my constant prayers, as are you and Matt. I'm praying for the best and hoping for a miracle. We have a God of miracles that loves us more than we can ever imagine, and is holding Jonah in His hand.

I'll be posting your button on my blog momentarily.

(((((many gentle soft hugs))))) to you, Matt and Jonah.

blessings, Karina

Justin and Kimberly said...

Hi there. I'm a new reader and found your blog from McMama's. I read that Jonah is having problems with eating. Have they by chance tried feeding him with a dental syringe? When my daughter was born I fed her with one and with my pinky in her mouth to stimulate "me" feeding her. The problem was that I was trying to nurse and in the beginning she wouldn't latch on well but I wanted for her to have my milk. So I pumped and even though it was a long process of filling up and feeding with the plastic dental syringe it was worth it until she caught on better. This is just a suggestion. I know the doctors know what's best but I wanted to toss out this idea : )

You and your family are in my prayers everyday.

Kimberly

nancy said...

Patrice, When I found out you had delivered baby Jonah and of his condition, I was literally in tears! I am praying for all of you and I know that prayer works! I don't have a blog but a FB page and I am spreading the word through there to all of my friends to pray, pray, pray for him, you and Matt. I can't stop thinking about you and all that you have endured! God will only give one what they can handle for he is an awesome God, never wavering from nothing else! Please know I am trying to spread the word for prayer for your precious gift from God! He is absolutely beauiful and I just know in my heart that he will overcome this! There is no doubt in my mind that you will not loose the faith because I know you and that you are a child of his. I have a heavy heart right now and it seems all of my problems have vanished since finding out about Jonah. I love you:)
In Christ,

Susan said...

Came to you the other day from...yes...MckMama! Praying for your family and for little Jonah to be free of pain and specifically that his case will not be the most severe. I've added his button to my blog and will be petitioning my prayer warriors on Jonah's behalf.

I read your post about the sleeping pill. How horrible! I've taken Ambien in the past and had very vivid dreams, but nothing like this. For a laugh...I once "jumped off a horse" in my dream and in reality, I jumped out of bed, hit the nightstand with my hip and landed on my bum! What a thud!

I hope today brings better news and a good day for Jonah!

Tabitha said...

Hi Williams Family. I am a college friend of Jamie Cook. When I came home Saturday night I was feeling depressed about some pretty minor things and then I read your story. It really put things into perspective for me. While I can not even begin to imagine how you all are feeling, I do know what it is like to pray without ceasing for a child. I am truly inspired at how you all are lifting this situation up to God. I find myself thinking about you and Jonah often and am struck to begin praying. I woke up last night to pray for baby Jonah and for some peaceful sleep for you both during the night. Know that your two beautiful boys and your family have already touched many lives.

God bless,
Tabitha Pattishall

Shon Earhart said...

Matt & Patrice. We haven't stopped praying for you guys. My home church in Missouri had a special prayer time for you yesterday, and my brothers church in Columbia, Missouri have also added you guys to their prayer chain. A miracle is coming. You ready for it?

I need to get your email/cell phone/contact info. Will you email me at Kids@pinedale.org

Shon Earhart

Mary said...

Hey, i foudn your blog from Kellys Korner & I just wanted to let you know that I am praying for your little man and your family!
-Mary

Simba9960 said...

Hi there – I found your blog through my Google Alerts. I have a daughter w/Recessive Epidermolysis Bullosa so I am signed up for any alerts that have any combo of those words. First of all CONGRATS on your little one. We definitely were where you are at right now 6 ½ years ago. My daughter was born in Miami Beach, Fl. The nurses had no clue where to start the care for a severe EB child but we somehow pulled through…

There is much advise I would love to share w/you but I’m sure you have more than enough information at the moment. The only few things that is so important for these kids to have the right start is a medical staff that’s willing to learn and listen to other parents/specialists that deal w/EB every day.

The Haberman nipple – which you might already be using – for feedings should be lubed up w/a little bit of Vaseline and maybe mix in just a tiny drop of baby orajel to make the feedings more comfy. Plus open the nipple hole just a small bit for less friction to happen.

Also, before the baby is touched w/any types of gloves make sure they put some Vaseline on them so that it won’t stick to any skin area and peel it off.

It’s a good idea to start him on some sort of acid reflux medication – like Zantac – to help reduce the amount of acid that might come back up his esophagus and cause blisters/irritation. Plus it’ll help during bandage changes to keep the liquids down when he is having a hard time from the process.

My daughter was given morphine and versed right before a dressing change but we immediately stopped it because she was going into respiratory distress too often. She stopped breathing on us 3 times and she had to be bagged and handled roughly in those three occasions which caused more problems. We eventually went the Tylenol way – sometimes Motrin (but Motrin tends to dilute the blood so we needed to be careful). As harsh as this might sound we quickly learned that our daughter had to learn how to live w/the pain. Of course when it was really bad we had no choice. But we slowly eased out of the pain medications the medical staff was administering.

Another thing we learned is that the incubator was causing more harm than good w/her skin. Since it was so hot in there sometimes her skin will bubble up into water blisters. This caused more open areas for us to tend to during bandage changes.

Have them look into dressings by Molnlycke. If they can order some Mepitel, Mepilex Transfer, Mepilex, Mepilex Lites these will be a wonderful to use for your little Jonah. Also try and steer clear from any Kerlix – these bandages are too abrasive for his skin.

Wow – sorry for that long winded comment! I didn’t want to leave so much information for you to read. If anything here’s my contact info: simba9960@yahoo.com. Just in case contact Debra of America. They will also be of help – if you haven’t already… www.debra.org

XOXO
~Sally Contreras, mommy to Bianca, 6 ½ RDEB

Anonymous said...

Hi, If would not mind you calling me either or email. My phone # is 712-371-3965 email nyesda@hotmail.com. I am a stay at home mom so am available any time. I was forwarded your blog. My husband and I had 2 sons with EB and I would love to tell you some things about EB. Every child is different. What works for some dosen't always work for the next. I am not sure what state you are in but we were in South Dakota with our first and Iowa with our second. We transferred to Texas Children's Hospital in Houston Texas. There is a great Dermatologist Dr. Levy who knows a lot about EB and is at the conference every year. As for feeding they really recommend the nipples they use for cleft pallet. They don't have to suck as hard which in turn causes less trauma. Do not use any kind of tape none. You do not want any tape Jonah. If you do put Aquaphor on him first. We used the sensor you could put on the foot. First we cut off the sticky part of it, put aquaphor on his foot, then wrapped it with soft cotton and used white tape around that so no tape was touching the skin. Bandages Mepitel works well. If you get on the DEBRA website Leslie Rader will send you some. It may take a while. I do believe we have quite a bit of stuff they sent us we would be more than happy to mail out next day. I haven't told my husband about you yet as I was just sent your blog and wanted to reply with info right away. But I am sure he would agree sometimes it just helps to have someone with you that has been through this. We could see about flying or driving to help you or just give you support. There are a few more suggestions I have for you but would be easier to talk to you. I know one couple that there son was missing a lot of skin when he was born and he has a type of junctional which is what our 2 boys had. But when we had our first son the boy was 6 and was fine. You just learn how to live with it. We also had a caring bridge site for him that was helpful in posting updates if you want something different than your blog. I would love to talk to you. I am sure you are busy. I can also call you if that works better if you wanted to email me your phone #. We will be praying for you, your husband, and son Jonah. We will add you to our church prayer list. Let anyone who is will to help help. I had a hard time with this at first. Let them bring you meals, clean whatever they offer let them. It will help a lot. Our family blog is ukenfamily.blogspot.com

Praying for your family,

Tashia and Stuart Uken and Abby

Renea said...

Praying for baby Jonah and your family throughout the day.

Anonymous said...

Sorry this is Tashia again. Forgot one other important suggestion about feeding. All Eb kids need extra nutrition as most nutrition goes to repair skin not mush goes to growing. Using Neosure and adding more Neosure powder to 26-27 calories is best. Also putting Aquaphor on the nipple helps to prevent friction while eating. We went through a lot of Aquaphor. We used it all over their skin as well to help reduce friction while holding and just in general.

Laura said...

Hi Patrice,
Laura Sullivan here and I'm praying, praying, praying...(I sent you a message to your inbox on FB. Don't know if you are checking that)
Karen(Stewart) researched some info that she said you probably already have, but wanted to send in case you didn't. She was having trouble posting on your blog, so she asked me to do it.

From Karen:
"The doctor may prescribe a mild analgesic to prevent discomfort during changes of dressings (bandages). Dressings that are sticking to the skin may be removed by soaking them off in warm water.

Feed infants using a bottle with a special nipple, an eyedropper, or a syringe.
National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS)Information ClearinghouseNational Institutes of Health

Phone: 301-495-4484
Email: NIAMSinfo@mail.nih.govWebsite: http://www.niams.nih.gov
"

Kinsley said...

Oh, Patrice and Matt, my heart goes out to you both and your beautiful baby boy. I can not fathom what you are going through right now. But, on a positive note I can tell you from my own medical experiences that being a rarity on the medical field is not always a bad thing. It pushes them to find a cure or at least a treatment. The people at Baptist are great (again from experience), but keep in mind that there are many places outside of Winston-Salem to go if need be. Baby Jonah is in my prayers as well as Cheston's. I hope you don't mind but I sent your story to my dad and you are all on the prayer list at his church in SC. It sounds like you have tons of friends, family and support, but if you need anything at all please let me know. I live a block away from the hospital and I am there all the time for treatments myself. Much love and many prayers...Kinsley

Julie said...

Praying for your sweet Jonah.

"Hope is what happens as long as we breathe." Just keep breathing...sometimes it's all we can do...

Hugs and prayers from Indiana!

Amy Reber said...

Hi Patrice,
You don't know me, but I just wanted you to know how much I am praying for your family and Jonah. I have a dear friend who lost 2 babies to EB. I have forwarded your information to her (Denise Haley) and I know that she would love to share some support. In the meantime, we serve a GOD of miracles, and I am praying for a miracle for little Jonah. Love, Amy Reber

purejoy said...

soo sorry to hear about your difficult night sleeping and just all that you are dealing with. i know right now that your mat is haavy (thinking of the paralytic who was lowered through the ceiling to get to jesus. he was carried by his friends when he couldn't walk himself). allow us to carry your mat for you. i do not know you, but as a mother of two perfectly healthy children, i do not know the agony of what you are experiencing, but i share the bond of motherhood and will continue to pray for you both, and for jonah.
wishing you blessings from our Father.
and carrying your mat…

Anonymous said...

I am sorry to keep typing random emails but I keep thinking of little things. I saw you are pumping which is fine. You can also add powder neosure to breastmilk to make it more calories. They do suggest not nursing as it causes to much friction and they have to suck harder thus using more energy for eating rather than healing.

Praying for you,
Tashia

Sarah said...

I just found your blog a few days ago, and I have been praying my heart out for your family! We have to trust in Him, that this is all part of His plan, but I know it can be so hard. I'm praying for your continued strength through all of this, and I'm praying harder than ever your sweet baby Jonah. God bless you all and know that we are all lifting you up! xoxo

danae said...

patrice, matt, and jonah,

we are praying round the clock for all of you, as well as the doctors. jonah, you are without a doubt one of the cutest babies i've ever seen! you are going to be quite a heartbreaker with the girls later in life.

all our love in Christ,
danae and shaun casteel <><

betsy said...

Josephine Marcotty (2008-07-03). "Long-shot stem-cell treatment gives two brothers a future". Star Tribune. http://www.startribune.com/lifestyle/health/19471139.html. Retrieved on 2008-07-22.

Janel Waters said...

Patrice,

I have been thinking about you and your family all weekend.

I had left you an annonymous message on one of your first posts (34 RDEB) - I couldn't remember my password - anyway, I finally remembered and signed it, so you can link to my blog and read some about my childhood. I have not updated my blog in some time, but maybe you will find something there to give you some hope.

Please feel free to email me janelwaters@comcast.net and I will give you my phone number should you have anything that you want to talk about.

God bless you and your family and you are definately in my prayers!

Janel

Geri Kelly said...

Hi- My name is Geri Kelly and I am the EB nurse Educator for DebRA of America. I would like to offer my assistance to you and your family. We have a new family advocacy program, a welcome box, and additional assistance available. Please feel free to contact me at 866-332-7276.

Best regards,
Geri

Tash said...

Here from L&F: wanted to let you know how incredibly sorry I am to hear of your loss of Gabe -- and now your fight with Jonah. Sending strength to your family, and please know I'm holding you all in my heart.

G$ said...

Much love, hope and prayers to you, Matt and Jonah.

Jane said...

I am having my church meeting tonight and I will share this with them, we will definitely be praying for you, Matt and Jonah. Praying you all have a good day and all the news will be good. May God Bless.

applesofgold said...

I found you from MckMama and joined your FB prayer team too. I am honored to pray for your son and your family. I want you to know that I had a dream of my own last night...and I thought that it was so odd, since I don't know you. But I saw you and your hubby standing outside Jonah's little protective box, one hand holding his little head underneath the little pad, like you discribed in your post...But Jesus was there...holding Jonah's little head and body and smiling over him. It was just too beautiful for words. I pray that tonight, you can see the same vision in your dreams...instead of the drug induce hulluciations...ewwww.!!!

Praying so hard for you all.
Love, Jenny in Louisiana

Cindy said...

Patrice: I am so inspired by your strength and faith. How lucky is Jonah to have two such amazing parents. Thanks for allowing us to share in this with you, you are constantly in my thoughts and prayers.

Leah said...

My prayers are with you and your precious little boy.

Mandy and Russel said...

Patrice & Matt,
My name is Mandy. I found your blog linked on another that I follow. I want you to know that I am praying for Jonah. I posted a prayer request and a link on my blog, I hope that is alright. I also posted the information on my church's website. http://www.mysouthland.org/browse/needhelp/prayerrequests
Please contact me if you'd like me to remove or change these postings.

Praying for you and your family,

Mandy K.
(Lexington, KY)

Raising Olives said...

Just wanted to let you know that we are praying for you beautiful little boy. He is an amazing miracle and you are blessed.

Thank you for sharing a bit of him with us.

Blessings,
Kimberly

epidermolysis said...

My daughter, Genia, has gone to Younglife a few times. We go to New HOpe where Brenda Bourn attends.
My biological daughter, Sydney,my adopted daughter, Genia, have EB. Sydney has just had surgery on her dystrophic nails. I have sooooooooooooooooooooo much I could tell you....especially living with it for 36 years and having children with EB.
With Dominant Dystrophic EB, which we have, there is a 50/50 chance of passing it along to your children. As soon as Sydney was delivered she stuck her thumb in her mouth..and ewwwwwwwwwwwwwww her skin came off. I knew immediately what was wrong, but the nurses were spazzing. You can call me at: 919-338-8104. We live about 5-10 minutes from Camp Royale. Be glad to meet you anytime.
Stacey

natalie said...

Oh, precious brother and sister in Christ. I so know what it feels like to have no words to pray. Please know that there are people out here, strangers on this earth, who are praying for you. Who are begging at the foot of the cross for your precious boy, that God's will be done and that you are comforted by the only hands that can comfort sufficiently--God is the Great Physician. I am begging Him to give Jonah's doctor's the wisdom they need to treat him and heal him completely.

A Growing Family said...

I just want to thank you for sharing your story and allowing God to be glorified through your trials- your attitude is amazing! I will be praying for precious Jonah and a complete recovery, for your family and for the doctors. I have had 2 little ones in the NICU and came very very close to losing one. I know God can and will work through NICU doctors and nurses!

Joe Murray said...

Congratulations on little Jonah. You don't know me, but I have a 20 month old daughter with EB. When she was born our experience was very simiar to yours. It is a very overwhelming and confusing time. I want you to know that if you have any questions please feel free to email me at KatieGAlex@yahoo.com. Or if your family or friends would like to talk to someone else about the disease I welcome their emails too. I also invite you to check out our blog on our daughter at teamjoella.blogspot.com. The doctors didn't give her much of a chance to live, but now she is a happy and active 20 month old that doesn't let her EB stop her.

Jesse Cassino said...

Hey guys, don't know if you'll remember me, but I came to Greenville for a long weekend with Sarah Stuart a few years back. Small world, I'm dating a girl whose college roommate went to church with you. Anyway, I'm sorry to hear that so much has befallen your family, and I hope that things will begin to turn around, starting with Jonah.

Take care, and keep your heads up,
Jesse

libby @ ninesandquines said...

found you through kelly's korner....saying so many prayers for you and jonah....god bless you!

Anonymous said...

I am so sorry for what your family is going through. You are in our thoughts and prayers here in Colorado. I saw your facebook group from a friend in NY. I am a NICU nurse and I took care of a baby with Jonah's condition several years ago who did fairly well and did leave the NICU and went home with his family. I was looking at your recent pictures and I couldn't help but notice Jonah's right foot. Its probably the camera/lighting but in the photo it looks quite dark. Just make sure its not really that dark in person (It would look like his toenails are turning black). I noticed he has umbilical IV lines and if one of them is an arterial line, it can interfere with lower leg circulation and cause big problems. I'm sure its nothing but I would have felt terrible if I didn't say something and he ended up with complications not related to the EB.

momma said...

i found you through kelly's korner and at sits. i put the button on my blog and have added you to my prayers.

don't worry about getting back to me or whatever. i just wanted you to know that there is one more family praying for you and yours!

Anonymous said...

Patrice,

I am not sure if you remember me from church; my memories of you are of a tiny girl..maybe 3 or 4 years old.. Needless to say, it has been a long time.

I found your link on Peyton's facebook page. I read through every blog you have posted, and I felt so connected with you-- especially for someone that i 'truly' do not know. I was laughing at some points and crying at others as I became involved with your 'story'.

I am a mother. I empathize with your struggle. Please know that I am praying for you, for Matt, and for Jonah. I wish you continued strength and endless support throughout this journey.

Erin Fortugno (Stewart)

beautifuldaisy said...

Hi Patrice,
My name is Patrick my daughter Daisy has JHeb and is almost 2.The first mistake the hospital made was to put her in a high humidity incubator. High heat and hummidity cause the skin to break down.The 2nd was to take her out and leave her exposed in the nicu and not put her in isolation she was colonized with a staff infection at 2 weeks old. Visit www.debra.org there is alot of good info on there.If you have any questions or just want to talk please feel free to call my wife Dana or I at 570-629-0230,or you can e-mail us through our daughters site www.beautifuldaisy.com . Praying for many blessings for your family.Pat and Dana Sherman

Dawn Moen said...

Patrice & Matt, the Moen family is praying for Jonah and the two of you as well. Since we are hopeful that Jonah will be with us for a very long time, I was wondering if you were going to set up a fund in his name so we could give donations? Any local bank would happily set one up for you. Being incredible Christians, I'm sure it's hard to accept donations, but being the mother of a 'special', million dollar baby myself, I know it takes a lot of resources in the first year and people would be happy to help.

Stephanie Jean-Louis said...

Your baby boy is so beautiful and strong! Thinking of you and your family ~

Rhonda said...

I am praying for your little one...I found you from Kelly's blog..I will pray hes in no more pain...That that doctors will find the best treatment for him.
God Bless.

Tonya said...

As a mother of a child with EB, I know the fears you have...but rest assured - by His stripes, we are healed. My daughter is now five years old and although she has a different form of EB from Jonah's, they are alike in so many ways. God will carry you through these challenging times and your Jonah will be a blessing and inspiration to all who know him.

Anonymous said...

We're praying fervently for you at Warners Chapel Church of Christ. May God bless sweet little Jonah and both of you as things progress. When I'm going through tough times, I try to remember that God doesn't give us more than we can handle. What a compliment He's given the two of you in KNOWING that the two of you can handle this!