Monday, March 16, 2009

jonah - monday, march 16th

Jonah had another good day today. He took all of his bottles and is beginning to eat more each time. They have said that if he eats an average of 70 cc's each feeding, he can skip his 9pm and 12am feedings without the tube having to go back in.

Matt and I were in on his dressing changes tonight. I wrapped one arm and one leg by myself (with the help of Sabrina). The wrapping itself wasn't that difficult, but it was really trying doing his exercises. It was just so sad having to hold on to his raw arms, hands, and feet and force him to move them when you know it hurts. It was probably harder on us than it was on him. He's so strong. He only whimpered a couple times when we messed with the really bad spots. The combination of medications and timing seems to be doing the trick. I think it was so difficult because it was a reality check- just realizing how raw his hands and feet still are. They may have healed some, but mostly they're just as bad as they were the day he was born. And I'm not sure how much improvement we can actually hope for. That may depend on his specific diagnosis. He doesn't seem to be experiencing nearly as much pain during the day and can make it on just one dose of Tylenol.

The audiologist came today and did Jonah's hearing screening. We hope it's the first step on the path to home. He passed by the way - the first of many A's in his future.

I'm pretty tired, but I'll be sure to post some pictures tomorrow.

Today's shout-outs:
- To Danielle, for my awesome blog redesign. She's very talented and has worked very hard with minimal input from me. She did a great job. I love it. Thanks, Danielle.
- To Matt's Aunt Katherine, who purchased the blog redesign as our baby gift months before Jonah arrived. Because of our current situation, I put it all in her hands, and she exchanged tons of e-mails with Danielle over the last couple weeks discussing all the details. Thanks for all your hard work and caring about it like it was your own. What a great gift! (I guess God knew my audience would be slightly larger than it was before.)

Sorry this is so late. I would have had it up an hour ago, but spent a very long time reading all the cards and looking at all the care packages we got in our PO Box today. Matt and I are constantly amazed at how many people love us and are praying for Jonah. We could never express how much it all means to us. The word "thank you" sounds really lame, but it's all we've got... so... THANK YOU!

Specific prayer requests for Jonah:
- that his hands and feet would begin to heal... especially his hands, which haven't changed much at all.
- for his diagnosis that we hope to have by Wednesday. (I'm dreading it...unfortunately clinging to the "ignorance is bliss" policy)


Hope you all have a great night. My posts will probably be late from now on, since we have dressing changes at night now, and we are participating. I don't really have time until we get home from the hospital. I guess you west coasters will have to pick up the praying slack, since the eastern seaboard folks need to get in bed... seriously, what are you guys still doing up???

49 comments:

Renata said...

It's worth staying up to get the Jonah report! We're praying for the diagnosis. God is in control and we are asking for his mercies.

We love you guys!

Debra said...

Just a west coaster letting you know that we are picking up the prayer slack. We'll get your posts long before we go to bed each night and continue to pray for all of you. We are so happy to hear about Jonah's good days. Just the first of many, many more to come.

Robin said...

Its wonderful to hear that Jonah is eating better. My heart felt prayers continue for precious Jonah and you both. I will see you on Wednesday and will pray for good news.

Love you, Robin

Zack Troop said...

I am so releaved and happy, more like elated that things are coming together and that Jonah is having more good days.

You will have MANY MANY goods days ahead. I know what looking at those wounds can do to your heart and all I can say is I am sorry.

We are on mountain standard time and we totally got you covered with the late prayers.
KaDee, mom to Zack,6rdeb

Amy said...

Just in case you felt like blogging after going through the mail, I checked. I'm praying for ya'll, loving ya'll and anxious to see ya'll again. A lot of ya'lls but I've been hanging out with a lot of peeps from Mississippi this week. :)

Rest well, don't think about the diagnosis...as it is with all things, it's in God's hands.

Janel Waters said...

Just sitting here waiting for a Jonah update! I really don't think I can sleep until I hear from you - it is so strange to feel such a connection to people I don't even know. I do know that we have that "special" bond of EB.

Oh well - I am thrilled that you had another great day and even more thrilled that Jonah is doing great with just Tylenol - this will really help him in the future!

I know that bandage changes and the exercises are very difficult for you and Matt - you two are very very stong people!

Always remember -
Faith is not believing that He can, but knowing that He will!

I know this sounds so odd - but I really feel like you will be pleasantly suprised by the final diagnosis of Jonah's type of EB.

Well - now that I have heard your good news for the day - I am off to bed to pray specific prayers for your little man!

Janel
btw - you should have your package from me in the next 2 days.

Diana Lopez said...

Thats great to read that he is no longer in much pain....well I am still up to read the updates on Johan, I don't have a child of my own, but I do have many cousins that I love so much, and would never want to go through these, but I admire you for your strength..god bless you and your family. Always Praying for Johan

Jennifer Pelkey said...

We are east coasters. Why are we still up? Waiting for our "Jonah News" of course. I cannot go to bed until I hear about sweet Jonah. We love him like he is a part of our family. We continue to pray for him daily. The pictures from yesterday were absolutely adorable! We just love him!
Jennifer, Darren, Matthew and Charlie Pelkey
Elkin, NC

kristen said...

may God bless you and your family! I stumbled upon your blog and am amazed at your hope and your trust in God. It will all be okay and I will be praying for you.

Molly said...

Hi, Love the new design. My niece had JEB, probably Herlitz. We know the pain of this devastating disease and we are continually praying for Jonah. I love the new photos as well.

I just want to let you know that my SIL ad very good success with a cloth diaper by the name brand of "Thirsties" they did wonders for our Lucy's little bum, a huge problem area. The derm at Children's in Cinncinati had never seen such success with an EB baby's bum. Just something you might want to consider. They would take them to the hospital as well, the disposables just would tear her skin to shreds. Hang in there. Many Hugs.

Baby Bird said...

Just waiting to hear the GOOD NEWS!
Sleep well tonight and God bless you all tomorrow and in the coming days! He is your peace, who has broken down every wall...Cast all your cares on Him for He cares for you! He is your peace! He is your peace! (A song my mom used to sing to me)
Love you guys!
Aimee Pence

Katherine said...

So glad to hear another good report today ... I'm on pins and needles waiting to hear about the sub-type, too.

Thanks for the shout-out, but Danielle really gets all the kudos for this one. She did a great job and really considered ALL the details ... I'm blessed to simply have been her co-pilot. :) But I must say, I did agonize over your blog design more than I did my own! It has a special place in my heart, and I'm so glad that you like it. We wanted to do you all justice.

Love from all of us in Birmingham ... praying all the time for new mercies each day for Jonah!

Brandy said...

Another west-coaster (WA) letting you know you're continually held up in prayer. I found your blog completely by random, and read all the posts this afternoon. I was in tears after hearing all that you go through every day, but am so happy that you continue to rely on our Heavenly Father for everything - He truly is the great Physician and holds your precious adorable son in the palm of His hand.
In Christian love,
Brandy

Lynnette Kraft said...

I'm continuing to pray for your sweet Jonah. I've had his button up on my blog since right after he was born. I'm so happy to hear that he's doing well. Praise God!

Thanks for sharing your beautiful son with us - your blogging friends.

Lynnette
www.lynnettekraft.blogspot.com
Dancing Barefoot on Weathered Ground

Anonymous said...

I came down to get a drink of water and had to check to see if Jonah had another good day today. I noticed your last post was late at night and figured that with him on the new schedule now, you wouldn't post untill later. I
am a stranger but I pray for you as if you were a close friend. My husband and I are yoru age and have a young son of our own, and when I discovered your blog I felt like we had a lot in common.
You have such a sweet spirit and Jonah is very very lucky to have such caring parents.

Amy Reber said...

I'm so thankful for another great day for Jonah! I'm an east coaster....and I can't go to bed until I read the daily Jonah news....and find out how I can pray for the next day. Tonight, I'm praying for God's Healing Hands to touch little Jonah's hands, for those tiny hands have lots of important tasks to do. I'm also praying for Wednesday, and the diagnosis report. God is in control. May you all rest well tonight. Much Love from Amy in Eatonton, Georgia.

langhofflove said...

To answer your last question: writing lesson plans - thank you college!

I just loved your story of the little prince's perfect day yesterday! I will pray for peace and understanding for whatever comes your way this week. So glad to hear he is eating so well - praise God!

Alisa said...

So glad you had another good day and that Jonah is eating well. What a praise! Praying for you as you await his diagnosis. I'm glad to hear that you are able to learn how to do his bandage changes. One step closer to home, right?:)

Anonymous said...

We're on Central Time (in Chicago) and had to stay up late to get some work done. Before shutting down the laptop, I always take a peek to see if a Jonah update is posted! We're overjoyed to see that he is progressing so well, eating great, and tolerating so much with little pain meds. AWESOME news! Hope the Tubifast and thick Mepilex pads are of some help to you... let me know if you need more and we'll get some to you. God bless all of you!

Adrienne & Pete Provost
Palatine, IL

m4layne said...

I have been praying for all of you since I found your blog. Each day I pray for calm and healing for Jonah and peace and comfort for you both during the day.

I am so thrilled with the good days. With His help you will manage the bandages and the exercises.

Nancy Etchison said...

Hi Patrice!
I'm still up because I'm checking the Jonah report before I go to bed! Here in Houston it's not too late. I've been reading every day but just hadn't commented yet to say "Hello, We're praying for you ALL, and We Love You"! Following Jonah's progress day to day has been so interesting - it's very encouraging to read about the prayers and support coming from everywhere. Love the pictures and the way that you write!
Love, Nancy

avbernat said...

I look forward to these remarkable posts. Keeping optimistic each time I click on your blog button and each time never failed... I love that you guys are so hands on with baby jonah and that he is doing better and better each day. I pray that the diagnosis will be something that will soon subside and I pray that Jonah continues to do so well. I'd lie if I said we don't mind the pictures because I always love seeing Jonahs face before I sleep. I show my boys of his pictures and tell them, "you see Baby Jonah? He's a miracle... which proves that miracles happen every day!" Thank you for sharing your day with us! AND YOU GUYS NEED YOUR REST TOO!!! LOL!

Brooke said...

Another west coaster (SoCal) here. Continuing to pray for Jonah to keep eating well, for the diagnosis, and for more good days, as well as strength for you and Matt.

Heather @ Sugarplum Garters said...

so glad to hear jonah had another great day!

i've been anxiously awaiting an update all day and am so glad to hear it was a good one!

still praying for you all!

Anonymous said...

"Be merciful to me, O God, be merciful to me!
For my soul trusts in You;
And in the shadow of Your wings I will make my refuge,
Until these calamities have passed by.

I will cry out to God Most High,
To God who performs all things for me.
He shall send from heaven and save me;
He reproaches the one who would swallow me up. Selah
God shall send forth His mercy and His truth."
Psalm 57:1-3

amber said...

Glad you had another good day. Will be praying specifically for baby Jonah's hands and feet and for the diagnosis on Wed. Will be praying especially for you and Matt as you find out the diagnosis.

Anonymous said...

Its day time here in India and it really made my day to read the update about his good day.

Many healing thoughts and prayers your way

-Gayathri

Melissa said...

Another good day! I am so happy for you guys! I do love the new blog design...it's just perfect the way it has places for both boys. Remember what I said about diagnoses...God's diagnosis is the most important thing. If left to going 'by the books', Bryson wouldn't be here today...luckily, God didn't read the books. Use that to keep hope, if need be. When Bry was little, I was always so scared to death that we would lose him, but one of his doctors told me one day that "that kid's strong, the only thing that could take him out is a Mac truck". That gave me the strength and hope to get through the rest. It was years later (last year, as a matter of fact) that the same doctor told me that he had told me that to give me strength, that he had honestly not expected him to make it because of how severe his case was. Sometimes your mind-set really does play an important role. We knew Bryson was a severe case, and we knew that we almost lost him a few times, but we never gave up. So, no matter what the diagnosis is tomorrow, no matter whether they say he has a mild case or a severe case, don't give up hope. Because God doesn't read the books...remember that...

Lisa Worthington said...

For those of us on the eastern seaboard who can't wait up to see your posts at night, there are some of us who are covering the early morning prayers! Jonah has been one of my very first thoughts each morning this week. Last night, 3-year old Rachel saw a Pampers commercial with babies on TV and cried out "Baby Jonah." She asks about him daily as well. We are praying hard that God will reveal the diagnosis as a blessing and that Jonah will continue to progress, with continued successful eating and little pain. We will also pray that his hands begin to improve. Much love.

Bethany said...

I'll be praying hard for you all this week. May I just say his hair is gorgeous...and all the rest of him too.

Anonymous said...

Wow! THank you for letting us know how to specifically pray. I am specifically praying for his little hands this morning as I read.
Dear Lord, please heal sweet baby Jonah's hands. May his Mommy and Daddy very soon be able to put their finger in his hand and feel his precious grasp. We know You are the Great Physician and can completely heal his body.
In Jesus' Name, Amen
Daisy (alabama)

Karrie said...

Jonah is just precious. And your blog looks beautiful.
Sending you love and prayers from Indiana!!

Karrie

Karla said...

I stayed up late just to get an update. This has become a ritual for me. I'm so happy that he continues to do well. My prayers for Jonah and your family will be unceasing! I pray for many more blessed days and a good report for Jonah on Wednesday. God is answering our prayers!

Karla
Tennessee

RLR said...

Hi Williams Family -

Couldn't make it for the blog post, so I'm reading it Tuesday morning. Love the new design (I've been waiting patiently since Katherine shared that little tidbit with me via email!).

I'm so glad that Jonah is doing better and that his pain is well-managed. I know that is also one worry off of your mind. I'll continue to pray for your family, including Jonah's healing, and that you continue to have the strength to deal with whatever comes your way. I know that there must be terribly hard moments. I also know that there's no problem too big for God, and that He can give you the peace, strength, and comfort that you need.

Blessings on all of you -
RLR

Martin Family said...

So happy to hear how well he is doing. Praying for you as you wait for Wednesday's diagnosis. Praying for Jonah's healing and continued eating. I am blessed each day to read of his accomplishments and your faith. God Bless.

Jalita* said...

I will admit that for the last few days I have stayed up WAY TOO late just waiting for a report from lil' Jonah. With all these good reports its been TOTALLY worth it. ;~)

Cute new design, also.

Jalita* said...

Also, I wondered if you guys considered cloth diapers for Jonah. I think they would possibly work wonders for his skin in that area. My son has now moved out of his and I would be willing to give our stash to you, if you were interested...and I could explain the details of cloth diapering to you if you wanted. dylhayd@gmail.com

Michelle said...

I am so glad you all had another good day. I am still praying for his little body to be healed, especially his hands and little feet. He is such a beautiful little boy. He is so lucky to have the two of you as parents. You are so strong and your faith in God is so uplifting. I am praying for the best diagnosis. Stay strong. God is so good!!!!

Emily said...

Glad to hear that Jonah had another great day! We'll keep praying!

I do love your blog redesign, but it is so large that I cannot see the columns on the right. Hmmm...not sure how to fix that.

Anyway! Praying for another great day!!

Jensmere said...

Still praying and lifting Jonah up to the Great Physician!

Thanks for the pictures...he is precious, precious, precious. Did I mention that he is PRECIOUS???

Bless you,
Susan

amy said...

I've been reading, but have never left a comment. Just wanted you to know that I'm praying for complete healing of little Jonah and for more and more GREAT days for all of you! Your sweet boy is just adorable and he obviously has amazing parents! :)

Much love to all of you!!!
Amy B.

Finn said...

Greetings from China!

Just wanted you guys to know that we are praying for Jonah every time we meet here. He is on the hearts of many, both American and Chinese. Stay strong and keep the updates coming!

-Finn

Julie said...

Praying for easier bandage changes!! I am so sorry his hands and especially feet are still so painful and raw. Praying for healing!!

Hugs and prayers!

Anonymous said...

God is so-o-o-o amazing! People are so-o-o-o amazing! We hear so much bad news about our world and the people in it, but we really live in a LOVING world. I have NO DOUBT that Jonah is eating on his own because of so many FAITHFUL, LOVING AND BELIEVING followers of Christ who continue to lift him up in prayer. Just think, most likely Jonah is being prayed for 24 hours a day, 7 days a week!! 1 Thes 5:17 Pray without ceasing.
Love you Williams Family in the name of Jesus.

Beth said...

Jonah is such a little fighter!!

We will pray for the overall healing of his little body, especially his hands and feet!

Cristina Bradshaw said...

Ok, can I just say that I want to leap through the computer screen and give you guys a hug, an extra long one for Jonah!! This morning on my way to work I looked into the rear-view mirror just to see an amazing sun rise. "Praise the Lord, his mercies are new every morning", I thought. The Almighty created this universe and all its intricacies. There is no room for doubt.

"The reason I can still find hope is that I keep this one thing in mind:the LORD's mercy. We were not completely wiped out. His
compassion is never limited. It is new every morning. His faithfulness is great. My soul can say, 'The LORD is my lot in life. That is why I find hope in him.'
The LORD is good to those who wait for him, to anyone who seeks help from him. Lamentations 3:21-25

We hope to visit when we're there in April.

mandi said...

Just letting you know that Jonah will continue to be in my prayers as you anticipate the diagnosis tomorrow. He his such a cutie!!!

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

I don't know if you can 'hear' the difference or not .. .. but I can sure tell a lot just by the tone of your voice today! You just sound lighter .. .. like maybe you've let HIM take a little bit more of the load!

Praying for nothing but positives tomorrow!

And, again, be sure to take care of yourselves, too!

Grannie in Florida

Katie said...

Patrice, Matt, Jonah and family -

I have read your blog and been touched every day since before Jonah was born. I, as were many of us, so destroyed to learn of the EB. Yet, through all of this you have proven so faithful and I am in such awe of your commitment to God and your child. I pray that you get a "less-severe" diagnosis tomorrow. Patrice, you've always been a special person in my heart and to see what you are doing for your son is just remarkable to say the least. Know that I am thinking about you and your family day and night and praying that you do not receive more than you can handle. Love! Katie Whitlatch Hamlin