Wednesday, October 21, 2009

prayer request

I'm feeling weary and frustrated tonight. Jonah's feeding issues are becoming worse, and things are starting to feel insurmountable. It's no secret that feedings are a struggle and that he only eats when he sleeps, but it's getting worse. I'm having to fight him even harder for his 9 am feeding, he'll barely eat three ounces for his 1 pm feeding, he typically won't eat again until 8 pm, and even then, it's SUCH a struggle. He only took two and a half ounces tonight before bed. And last night, he wouldn't eat at all overnight. He just screams and screams. And today was not the only bad day. It's been going more and more downhill. He only ate 15 ounces today.

I'm praying my heart out that something changes and fast. I do not want a g-tube, but I have to think about what's best for Jonah. I'm out of ideas. I have nothing left. All I know to do is pray.

I know many EB kids have g-tubes. But I also know that a g-tube means surgery. I know that a g-tube means yet another blistering sore on my child. I know that it is yet another site that will infect easily. And it scares me.

I'm tired of having to make these hard decisions. I'm tired of him (and me) having to struggle at every feeding. I'm tired of feeling scared that whatever doctor has to do this operation (if it comes to it) may not handle him right or might not take the right precautions. I'm afraid someone will mess up, and Jonah will pay the price.

I've been in tears tonight over all this. I'm out of ideas. I don't want advice. I don't want comparisons. Jonah just needs prayer. I feel that it's getting out of control rather quickly. We're going to watch what happens over the next week or so, and if things don't get better, we'll have to start talking to his doctors to discuss our options.

Maybe this sounds rash to some of you, but the problem with EB is that once a child falls behind in weight/nutrition, it's almost impossible to get him caught up. So how far do you let it go? The key to EB is nutrition. And unfortunately, the key to nutrition is the g-tube.

Please pray for Jonah. I keep begging God to let him be able to eat. I can't believe that I'm having to pray for that. I'm having to ask God that my child be able to eat... who should have to pray that? I'm just so tired. I've tried everything. I don't know what else to do.

189 comments:

Anonymous said...

Praying for you now.

NickNonna said...

Praying for Jonah and for you and Matt.

Anonymous said...

praying for Jonah all the time!

Anonymous said...

Praying for you.
Hang in there - God will guide you in these times.

Mary in NE

Kimberly said...

praying for you Patrice, and for sweet Jonah..

Clark5 said...

Our thoughts and prayers are with you all.

Rachelle said...

praying for Jonah and for you and Matt to have peace and clarity in your decision-making.

Laura A said...

Sending many prayers your way. Prayers for wisdom, strength, peace, rest and healing. Definitely healing.

Love,
Laura

Anonymous said...

I feel overwhelmed for you - can't imagine how you feel. Praying in South Carolina.

Marianna said...

Saying a prayer for you and Jonah.

mindy said...

after I read, and before I commented, I just asked God to please help Jonah to take all nutrition by bottle.

These decisions are never easy. We faced a similar situation placing a port in our baby's chest this past February.

I will continue to pray for Jonah daily. Stay strong Patrice, I have said it before and will say it every time. You are an amazing, fierce and determined Mama. God knew that Jonah would need YOU in his life.

in prayer for all of you,
Mindy

Kim and Asa said...

Praying you find peace in the right decision for you and Jonah.

I've been in the same boat but with EB there are extra worries!

Check into Periactin. It is an RX.

Lots of prayers!

www.caringbridge.org/visit/asawilson

Anonymous said...

I know that you do not want advice but I want to encourage you that God hears you and will come to you and Jonah!! Prayers for you both. My mom had to pray that same prayer for my brother, he did not have EB but he also was in a very scary place at that time. Remember Jer 29:11

Anonymous said...

Praying!!!

Alex(andra) said...

Saying many prayers for you, Jonah and Matt.

Anonymous said...

God chose you to be Jonah's mommy bcs. He knew that you would tirelessly love and care for him! You and Matt do and will make the best decision for him. Praying for you...

shanemotb said...

Hugs and prayers for you all!!!

shane, mommy of twin boys Alex and Sam

Brenda is SO Blessed said...

prayers for all of you and especially for J's ability to take nutrition

The Alger Family said...

Praying for you, Jonah and Matt. Now and always!

Suzy said...

All the prayers coming your way! I feel awful that you all have to endure this. Especially that beautiful little boy!

Team Martins said...

You're right, no one should have to pray for that.

But pray for it we will because God knows that this kind of suffering shouldn't have to be.

Believing with you for a Jonah-sized MIRACLE!

Anonymous said...

Praying for the Williams family tonight. Jonah is so lucky to have you as his mom.

jaime s said...

praying!

CastingCares said...

Praying for Jonah to eat.

amanda said...

I'm praying for you and Jonah. I'm sorry I never commented before now, but please know you and your beautiful boy are in my thoughts.

Amanda

Stacey said...

Praying from TN for your family.

Erica said...

Praying, praying for both you and Jonah.

Krystal said...

Praying for you and Jonah.
(((((((hugs))))))))

Summer said...

Praying.

the-mommy-person said...

God please help. Just help. Please give Patrice and Matt and Jonah a well deserved break.

Anonymous said...

I am sorry that you are having to go through this. My son also would not eat very much and he had no reason to refuse food, but I remember getting so frustrated too. My doctor prescribed Periactin. It is an allergy medicine, but increases the appitite. It worked for us and so have vitamines. It is worth a shot if he can take it. Hope it gets easier for you.

Alicia said...

Praying for you, Matt, and Jonah tonight. Praying that there is a miracle and he will start eating again.

LisaL said...

Praying for you.

e. said...

Said a prayer for you guys...I'm sure you know this, but you're an amazing mother. Kudos to you Patrice!

Anonymous said...

Continuing to pray for Jonah and for YOU! When God leads you to it, He leads you through it. May you find peace, comfort and strength. Pat in Batavia, IL

Sonja said...

Thank you for being specific in your prayer requests--it is really helpful. You and the feeding issues will be prayed for!!!

Rebecca said...

Praying that things will get better soon. Stay strong. You are doing a great job.

Rachaellh said...

Praying for Jonah tonight and for you Patrice. Praying for God's hand to reach to you both and comfort you as you take care of Jonah. Praying that Jonah will be able to eat as much as possible and grow and thrive. Baby Jonah is so long by this household even though we have never met. My daughter is 21 months and she loves to see Jonah's picture. She always smiles and starts to sign baby. We love your whole family and will continue to be your prayer warriors!

Sarah M. said...

I know exactly what you mean about "who should have to pray for that"...my 3yo got a g-tube when she was 2 due to being FTT and it was a hard enough decision without EB. Praying for you.

Anonymous said...

We lift you up to the Lord for strength, rest, support, encouragement, and love. May the Lords hands touch Jonah...praying that Jonah will rebound quickly with eating for strength,healing and nutrition. We all love you and wish the best for your family!

Jimmie's Auntie Amber said...

I'm so sorry Patrice. I am praying...

Anonymous said...

God has a plan but it's so frustrating, at least for me, to not know what it is right now!! Praying.

Cara said...

Praying for you in Iowa...

Anonymous said...

Praying for Jonah...and for you and Matt!

Pamela said...

Praying for you and your adorable little boy. I keep trying to come up with some good, encouraging words, but none of them sound right or helpful, so I'll just leave it at "Praying for you and Jonah".

lifelaughsandlove said...

God can do it! I'm praying for Him to intervene in a powerful way. Hugs to you and Jonah!

~Amy

Jessica said...

Sending extra prayers to baby Jonah tonight.

chapinamom said...

Praying for you all bigtime in Ohio!!

Laurie said...

Praying for Jonah to eat a lot tonight (and everyday)...and praying for you and Matt as you struggle with what is the right thing to do for Jonah.

Mel said...

You got it. Prayer going up tonight from Arkansas. We love you all and pray for God's blessings in this situation.

Much love
Mel

Shari said...

Storming the gates of Heaven on your family's behalf daily. Thank you for being honest.

Anonymous said...

Praying for Jonah in India

Our life is a bowl of Barry's said...

I'm so sorry that you are in the midst of these dark moments. Thoughts and prayers for you and you family right now.

Shuggamom said...

Praying for precious Jonah, have been praying for him since his birth. Patrice, just know that beside GOD, alot of people love Jonah and you and Matt as their own family!! I check in on y'all every day or so. You make me laugh and cry. Please kiss Jonah and praying for him to have a BIG appetite!!

Love and Blessings
Stacey
East Texas

Teresa said...

Hi Jonah,
We are praying for you! God, please give Jonah's mommy strength especially when she is tired. Help Jonah to have a breakthrough and eat, eat, eat! We pray that he won't need a G tube.

In Jesus' name we pray
Amen

Love,
Teresa, Ali, and Sammie

Amanda said...

Praying for you and Jonah--praying for no g-tube and that he takes his 4am feeding well and drinks 20 ounces tomorrow.

Jen said...

Your sweet boy, specifically his nutritional needs, are being lifted to Jesus. We will beg and plead with you.

Sara said...

we have tried the Periactin too. with two of my kids actually. I have learned the following: it only works as long as you use it. you can't use it for a while and they stop and hope they keep eating. Doesn't taste so hot; BIG side effect, sleepiness, which may not be bad at night, but I know during the day it is. You have to give it x amount of time before each feeding and it was such a stresser for me to remember ok she needs to eat again at 2 so I need to give the medicine x amount of time before hand. Too much to remember for on top of everything else that comes with EB.

I defiantly doesn't hurt to try; it may help short term. I have been where you are, I wish I could tell you WHEN it will get better. For Sami it was when she started school at age 4. Then she would eat willingly and without a fight. So from birth to age 4 every meal was a struggle, fighting to get something into her, worrying about dehydration; gaining weight; not being anemic, etc...I know this isn't helping much, but we are all here for you and pray and hope things will get just a little bit better.

I know some EB kids who have had VERY successful and infection free g-tube placements if you'd like to talk to their parents.

Jennifer, Sunshine, Angel, Miss Thang, My Birdy (formerly Baby) said...

I am praying for Jonah and you. I have not stopped. I will not stop.

Anonymous said...

Whatever you do, it will be the right decision. That's all you need to know. We're praying.

Rose said...

This post made my head spin, I'm so sorry dear. God made YOU Jonah's mommy because you are the very most fit. I am praying that the ultimate healer heals Jonah and dissolves all confusion.

Jenny said...

Praying for Jonah's intake to increase and for a sense of peace, hope, and wisdom for his amazing parents.

Rachel said...

I am sorry you are feeling so low and defeated. Again, I do not know anything about EB but will throw out any ideas that come to mind. They probably will not help, but it is worth a try.

Can he eat small yogurt melts? They are made by Gerber and melt pretty fast. I always broke them up into 3 or 4 pieces when I first introduced them.

What about one of those mesh bags that you can put fruit in for him to suck on. Frozen peaches are always nice to keep things moving digestively and another favorite is the Yobaby yogurt frozen into ice cubes. I always push the yogurt on my little 15 lber because of its 27 calories per ounce ratio is huge.

I hope you find some strength from all that are praying for you tonight...

Carol said...

Praying that your Jonah will eat, that he can eat. You are such a great mama. I just know you are doing all you can. Lean on others and ask for help. If asking for prayers is the help you need, I am honored to be there for you. "When I call on Jesus, all things are possible"....a favorite song comes to mind always! Carol in Iowa

queenmari said...

Patrice, I am praying for Jonah and for you and Matt.

Blessings, Mari

Nancy said...

Prayin' in PA!!!

Staci said...

Praying for Jonah that he starts eating better very soon. Also, praying for you and Matt that whatever decisions you have to make you can feel peace in making them.

Annalien said...

Praying that Jonah will be able to eat more and without pain and praying for strength for you and Matt. You are doing an amazing job under very difficult circumstances. God bless you and hold you up!

The Fort Worth Realtor said...

I've never met you, but I'm praying for your sweet Jonah. I pray that your feedings tonight would go smoothly, that the Lord will heal your baby and that He will hold you closely during this trying time. May the Lord's face shine upon you and may you reflect His Glory. May God be glorified through all of this, just as He received the ultimate glory when he sent his own son to suffer and give His life for you and I. God knows the pain you feel and I pray that tonight he would hold and minister to your heart through it all. In Jesus' name, amen!

Nancy Bane said...

Prayers from NW Arkansas.

Carrie said...

Always praying for Jonah . . .

Anonymous said...

Patrice, you and Matt are really great parents to your little boy, you are looking out for him and loving him and taking such great care of him - so you see that whatever happens here will be the best thing for Jonah, whether it's a g-tube or not. So - I know I can't say 'don't worry' - but remember the best thing for Jonah WILL happen. You'll make sure of that. And I so hope for you that some of the ideas here can help you now when things are tough.
Linda

cassie said...

HUGS!!! Prayers always (more now then ever)

Love,
Cassie in MN

kim_brough said...

Dear God,
Please put your loving arms of comfort for Patrice, Matt, and sweet little Jonah. Help Jonah be able to eat well. Place decernment on the hearts of his loving parents in regards to what to do in regards to a feeding tube. Help Matt and Patrice to keep a strong bond through these difficult times.
And while it not make a huge difference, can you have something happen that make them laugh? Like the bust a gut, can't catch their breath type of laughter. I think that makes the overwhelming a bit easier to swallow.
Thank you for being Soverign and never forsaking us. Thank you for the promise that you are always with us, even when it feels like you're miles away.
Most of all, thank you for Jesus and the redemption that comes only from him.
Amen

Anonymous said...

Sending prayers your way!

Anonymous said...

I wanted you to know that there is an entire church in Wales, U.K. praying for your sweet Jonah. Your family is being prayed for in lots of different countries and time zones. Since we are ahead in our time zone then I can easily pray for you when I wake up and it is the middle of the night for you. So there are people praying for you round the clock!

Anonymous said...

I was about to post almost the exact same thing as the previous commenter - I don't think I've commented before, but I've been praying for Jonah since he was born and since I'm also in the UK, I'm praying while you're sleeping. I can't imagine how hard and unrelentingly this is for you, but please know that you, Matt and Jonah are being thought of and held up in prayer around the clock, around the world.

mary said...

Add me to the list of people praying!!! And don't forget to take comfort in the fact that he IS gaining weight, despite your feeding difficulties. Thanks be to God for that miracle!!!

Anonymous said...

Praying for that sweet boy; I hope he is able to find comfort again in eating. I understand all your wishes for prayer vs. advice or other input. Jonah has you and Matt for all the right decisions.
Everyone is praying for Jonah.

April S. said...

praying for you, Jonah, and Matt.

Em said...

add me to the list of people that are praying for Jonut and you and Matt.

Jen said...

Praying for strength and wisdom for you and Matt. Praying even harder for Jonah to start eating more.

The Foster Home said...

Praying!!

Anonymous said...

Praying that Jonah will get over this obstacle soon!
I am sure you and your Dr's are on top of this, but how is his nipple flow? Could he need to move up to a different level? I know mine would get very frustrated and refused to even eat when she was ready to go to a #3 nipple.

Mindy said...

Praying.

Anonymous said...

It makes me so sad for you when you are feeling so defeated. I will certainly pray for wisdom for you and Matt. As his mother, you know him better than anyone else and your heart will guide you in the right direction as to what's the best decision for Jonah.

I have a severely special needs nephew and my sister/BIL struggled for YEARS as to insert a G tube or not. He has always had MAJOR eating issues. They finally decided it was time to do it last summer b/c eating had become such an issue and lack of nutrition started effecting other areas of development etc. All I can say is it was the absolute best decision they ever made! He is doing better this year than he has in the past 9 years. HOWEVER, I know he does not have EB and that is completely different circumstances. Just wanted to leave you with a positive experience if it comes to that.

Terah722 said...

Oh girl, I was really hoping to find another sarcastically funny post by Patrice or a Jonah's day post, or a Matt answers readers questions post. I sure hate to hear that Jonah is having such a rough time eating and of course that it is so hard on you as well. I am glad though that you can share these low moments with your prayer warriors and that we can lift your family up to our wonderful Lord (as we do everyday.) We will be praying extra hard for sweet Jonah, you, and Matt today. EAT JONAH EAT!

Love and LOTS of prayers from Florida

Mira said...

praying, praying, praying!

Toni :O) said...

Awww sweetie...so sorry to read this. My heart aches for you all. Most definitely we will pray so hard for your sweet Jonut. Sending you love and hugs for strength and support during this difficult time.

Anonymous said...

I'm so sorry to hear that Jonah is having such trouble eating. You and your little guy are in my prayers!

Jess and Krissy said...

Praying for Jonah to start eating and for God to give you the answers you need about his care. Much love and prayers for all of you.

Kristen said...

Praying.

Anonymous said...

Praying for Jonah and for his wonderful parents.

Erika said...

makes my heart hurt for you all - praying hard for Jonah to eat...

Patty said...

You and Matt are the best parents for little Jonut. You will make the right decision when the time comes. Praying for you all in NW Pennsylvania.

Jara said...

Prayers have been send up to the Lord...

Linda said...

Hi Patrice:
So sorry to hear that Jonah is having such a hard time eating. Remember you guys are in our prayers everyday. Special prayers for you today. Hang in there. I know how hard it is to take care of Jonah but remember so many people love your precious son. God Bless the Williams family. Love Leah's Nana

Anonymous said...

I am sending prayers your way.

Anonymous said...

PRAYING

LOVE YOU ALL

Erica

Ronda said...

Praying for Jonah to eat and feel better.

Anonymous said...

lifting you, your family, and Jonah's digestive system in prayer.

praying also for your discernment

shoutingforha said...

This breaks my heart...
I'm praying for you.

Maile said...

I will pray for Jonah and his eating. Every time I eat and every time I feed my child I will pray for you and your sweet baby.

Anonymous said...

The answer will come.

Anonymous said...

Praying for Jonah, you and Matt.

Beth said...

Praying in South Carolina.

Precious 3 said...

Praying with the assurance that God will answer!

M J said...

I can't imagine how frustrating and frightening this must be for you. I always pray for Jonah, but I'll pray a little extra over the next few days.

Amy Lynn said...

Praying for Jonah today.

Heather said...

How frustrating and upsetting! I will be praying.

Kristy said...

Praying for Jonah and you. Hope it will not come to surgery/g-tube. However, if it does.....make sure you speak to EVERY medical professional personally before it is done. Don't assume the doctor will tell the anesthesia department about Jonah's condition, etc. We made that mistake once, but never again.

Heather said...

Praying, praying, praying. Without ceasing.

Alyson said...

OH HOW I KNOW YOUR STRUGGLE!!!!!!!

Avery still is not a great eater when it comes to his bottle/cup......

He too would ONLY eat when he was ASLEEP!!! I used to cry and cry, because Avery is so small......I mean he's 20.8 pounds and almost 17 months old......

Things got better over time....But they still aren't 100%......However he is NOW OFFICIALLY IN THE 5th PERCENTILE!!!!! YAY!!!! lol

As long as he is thriving and not dehydrated, that in itself is a great feat :0).......

This may mean that he is craving more solids now too.......Avery would NOT eat vegetables of cereal....but he would eat fruits very well for me......He caught on to veggies and oatmeal eventually...

You are doing such a great job and please try not to be discouraged.....I know that is so hard to do......But I think Jonah may be telling you that "He's in charge"....lol......Avery will not let me be in charge of anything that has to do with him......He has made up his own schedule and I had to conform to his .......I only ended up sad and depressed and frustrated when I would try to force MY WAY on him......

You are SO SO SO SO SO SO SO IN MY PRAYERS!!!!!!!! (as always)

Please if you need any support about feedings or anything please do not hesitate to ask!!!!......

They

Redeemed1 said...

Praying for you, Matt, and Jonah.

Misty said...

I keep reading, but I don't often post. Patrice, there are so many of us out here praying for you and little Jonah. God alone is the answer to your struggles and you already know that - He will provide the right doctors, the right nurses and the right options at the PERFECT time. Just continue to lean on him. I definitely know that it is easier said than done and I don't for a second pretend to have it down pat myself - but I know that when I lean on God more, I have less to weigh me down. You should enjoy those precious little things with beautiful Jonah, because these are fleeting moments - kids grow up so fast. I miss those newborn cries and those late night feedings - mine is 9 years old now! We have our own health struggles that seem like a grain of sand on a beach compared to the struggles you are dealing with of EB, however you should know that ALL moms often feel these things...we question ourselves, we fear for our children, we long to make the right choices - but if you continue to ask God for the help, He will guide you the right way every time. Know you are not alone!

boltefamily said...

Praying!

Lexie said...

I don't think I've ever commented before but I certainly check in on you guys often and have since his birth. Praying for your family and specifically for little Jonah to eat from the bottle like there is no bottom to it!Praying in Arkansas...

lottfam said...

Praying specifically for Jonah's eating issues . . . praying for strength and wisdom for you and Matt . . . praying for Jonah's little body to miraculously retain nutrition!

Tricia said...

Praying.

Williams' Family said...

Don't know what else to say, but to tell you that I am praying for you! I have little boys. 2 with health issues, one of them is feeding issues, and I know how stressful it can be!

jandswood said...

We are praying too! Hang in there!

SkodaFun said...

Praying for your son and for your whole family.

Kara said...

Lifting you up in prayer now.

Anonymous said...

I've never commented before, but have been keeping up with your blog for many months now. Continuing to pray for your family and sweet baby Jonah!

Courtney Roth said...

Hey Patrice,
It's Courtney Roth... momma of Baby Tripp.
I felt the same way you do right now before Tripp got his G-tube. I was a mental, emotional, and physical WRECK. I knew that it would be a new blister and another spot for us to heal.
After he got his G-tube, it was like someone had lifted a HUGE weight off of my shoulders. No more struggle. They actually PUT his tube in over a blister that wasn't healing and had been there for about 2 months.
We fought with the anesthesiology team initially until they finally understood that there was to be NO TAPE AT ALL... NO EXCEPTIONS.... If that hospital won't agree to that, try the next.
Because the last thing you want is a new G-tube AND new blisters from tape.
They did the surgery and he came out with not one single mark on his body except the tube. And the site looked MUCH better than I thought at first, and it actually is healing BEAUTIFULLY... much to our surprise.
The doctors all took our aquaphor tub and they all greased themselves from fingers to elbows they said. They put the heart monitor leads on without using tape, and held the IV in without using tape.
Also, I don't know if you have the Mepitac tape, but if he does go into the hospital... get you some of that.
I know you are frustrated, but I just wanted to give you some encouragement.. It was the BEST THING we have ever done... FOR TRIPP and FOR US.
Please call me if you need to talk about the tube or have any questions.. also, I have direct phone numbers and e-mails to the specialists in Cincinnati who have been AMAZING through all of his surgeries. They spoke to all of the doctors before they did any kind of surgery on Tripp.
Also, if you would like to talk to the doctors from the hospital that Tripp had his surgery done, I would be more than happy to hook you up with them... THEY WERE EXCELLENT!!
I will be praying hard for Jonah and your family.
Please call or email me if you need anything.
Love,
Courtney Roth
(985) 969-6942

Sabrina said...

Praying for Jonah!

Carla said...

I will be praying for you all.

Anonymous said...

Tearful yet hopeful. Please God, heal Jonah. Please God, take the heavy heart from Patrice as she languishes over her sons health issues. Please give Jonah a mighty appetite and ability to eat. We don't understand these things but take comfort in knowing it matters to you and you are full of compassion and faithfulness. We need your intervention. Please God.

Nohemi Beck said...

Patrice,

I hope god gives you strength and wisdom to make the decision you have to make for jonah. But i am praying that you dont have to make any decision at all. I have faith that jonah is going to start eating like he should. Patrice stay strong. I will be praying for you, matt and Jonah!!

With much love,
Nohemi Beck

The Sierra Family said...

i'm sorry sweetie. we are praying for you and matt and little jonah.

thislovelyjourney said...

My heart goes out to you, Matt and Jonah. Being a parent (especially a mom) is already so hard -wonderfully hard, but hard- and to hear Jonah's and your struggles makes my heart cry out to God on your behalf.

You all are solidly in my prayers and specifically right now regarding the feeding issues. Also praying for YOUR peace and continued faith in the Lord and His all-knowing ways.

Continue to be strong, Patrice; but also take time to rest and to weep in the strong arms of Jesus. And I hope you can feel warmth and love from all of our prayers wrapped around you and your family.

Country Roads said...

Praying for Jonah - today, yesterday and the tomorrows to come

Krista said...

Thank you for sharing a very specific and urgent need with us. I wish I had some great advice for you. Do you think he's teething? I wonder what affect teething has on an EB baby.

I will be praying that over this situation today.

Stefanie said...

You are the best mother Jonah could have ever been blessed with. Praying for you all right now and always!

Crystal in IL said...

Praying for your family daily.

We4Kingz said...

Dear Lord PLEASE touch Jonah's little body and strengthen his parents. Give them wisdom to do what is best for Jonah.

Aimee said...

Dear sweet Patrice:
Praying for an extra measure of strength and resolve today! I love you girl! May the peace of God that passes all understand rule your heart and mind in Christ Jesus!
Kisses to sweet baby Jonut!
In His Great Love, Aimee

Ani said...

Oh Patrice... Prayers for you and Jonah...

Kristine said...

I'm praying for Jonah and his eating. I'm exactly where you are right now....and have been for about 14 months. My little girl DOES NOT eat. And we have lots of developmental concerns. She had Meningitis as an infant with a subsequent brain injury. It's so scary to think she's not getting the nutrition she needs.

She gradually decreased her bottles to about 12 oz per day and then at 10 months stopped taking them altogether. She has reflux and I guess, finally decided that she had had enough. I freaked out and did not want a Gtube either. I started feeding her the highest fat yogurt I could find. We were lucky that she liked it. She lived off of milk via straw and yogurt for months and months until I could get her to eat more purees. She's 22 months now and I spend about 4 hours (my mom spends another 1-2) per day trying to feed her. We go to stores with food...I chase after her with food...it's very hard.

I know you didn't want advice, but thought I'd let you know that you're not alone. One BIG, BIG thing you have going for you is that Jonah is still nicely on the "charts". Katie has been way off since 5 months old.

I'll be thinking of you and Jonah!!

Samantha said...

I am praying for your precious little boy.

Mom 2 my boys said...

praying for you and Jonah, as I always do.

MITZI said...

consider yourself hugged and hugged. I'm praying for the three of you.

Amyb99 said...

Praying and lifting Jonah up to our Lord and Savior. Praying for direction, for strength, for peace and especially for continued growth! God bless.

Wanda Wilkinson said...

PRAYING

Ellie said...

I pray for Jonah regularly, that he will not be in pain. Now, I will add to that--that he will be able to eat.

Amy said...

No advice, no comments...just to let you know I will put Jonah in my prayer book tonight.

Anonymous said...

Prayers for baby Jonah and his family.

Anonymous said...

Patrice,
I am praying-begging God-to give you the miracle you need. I also asked for strength, guidance and peace-your situation is so difficult. I usually don't read through the comments, but for some reason, scanned through them today-Courtney Roth left a really detailed message and an invitation to call and talk to her. All of your followers care so much, but only other EB parents can really know what you are going through-maybe a call to Courtney would allow you to share with someone who has 'walked' in your shoes and really 'gets' the incredible emotional and physical stresses that you are experiencing. You all are always in my prayers.

Jen Burns said...

Jer29:11 For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call upon me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you," declares the LORD,
Pslm139:13 For you created my inmost being;you knit me together in my mother's womb.
14 I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.
15 My frame was not hidden from you
when I was made in the secret place.
When I was woven together in the depths of the earth,
16 your eyes saw my unformed body.
All the days ordained for me
were written in your book
before one of them came to be.

Heavenly Father God, we trust that You will continue the good work You've begun in Gabe and in Jonah and in Patrice and in Matt until the day of Christ Jesus. We trust that You will never leave them and will always understand their needs. Father God we ask that Your mighty strength and Holy Spirit indwell within them and through You they will be blessed with wisdom, patience, healing and power of the Most High. We trust in You Lord to give wisdom to all the doctors and nurses and specialists that surround Jonah. To bring Glory to Your Name Jesus and peace to all their hearts. Healing in Jesus' Name, Amen!

Lisa said...

Oh, mama. hang in there one more day. We're praying for you and Jonah.

dg darling said...

Praying...{{HUGS}}

Anonymous said...

Praying for you and your family. Much wisdom, endless grace and all consuming peace to you. Blessings and love-
Amber

Kathy said...

Constantly praying for Jonah (and you)!

Anonymous said...

I've been keeping up with your blog for a while now but have never comented. Patrice, you are an amazing person and especially an amazing mother!! I'm praying for a feeding miracle from God right now!
Praying in AL
Cheryl

Valerie said...

praying for you guys...for better feeding & clarity on the right path for Jonah's health. Stay strong!!

Tonya said...

Hi I am new to your blog. I found it through another blog that I posted on. I just wanted to say my prayers are with Jonah! I have also prayed for my daughter to eat, prayed for her to gain weight. I can feel your pain. I hope he does not need the gtube and starts to eat better.. you are in my thoughts!

crazymom said...

Praying for you and Jonah. And my little guy had a ng-tube because he could not eat without wearing his heart out. We only used it at night, and tried to bottle feed him during the day. It was a huge ordeal, but we made it and you will too!! Just hang in there!

Laura said...

We have been at this point before with our daughter. We did not have to worry about the EB so I know that must add an even bigger weight to your decision. Please know that we are praying for you, Jonah, and Matt. Just wondering if they have tried Reglan to help him digest the milk faster? We tried that with our daughter before she had the feeding tube. We also tried the Periactin. Not sure what kind of formula you are using but we finally found one that worked for her. It is called Pregestimil. We had to put baby cereal in her bottles when we did feed her by mouth. It was thick enough to eat with a spoon. It was the only way she could keep it down. Not sure if any of these ideas would help but I thought I would share. You are a great mom and you are doing a great job. Please know that we are praying here.

Anonymous said...

Still praying in South Carolina.

Cici said...

Praying.

Lindsay said...

Praying for you. Sorry it's so tough. God cares for you so much.

Lynne said...

I am praying for Jonah and mommy and daddy. It is not fun when your children do not eat. I went through the same issues with my son except he does not have EB. But I am so thankful for the G-tube. I know that if he would have a bad day eating that he will make up for it with his g-tube feeding. If you have any ?s about the gtube and all that just let me know. You can email me at Noahsmom2004@comcast.net

Michele said...

No advice...just prayers. Lots and lots of prayers. =0)

Kathryn said...

Absolutely! Prayers going up...

Jessi said...

Praying for you three. Love you.

Lift Up Your Hearts said...

It really does feel huge that on top of EB, you have to be concerned for little Jonah's eating. I only know your little guy through your blog and I love him so and pray for him whenever I think of him! xoxo

Anonymous said...

Praying.



Carol
SC

Tamar SB said...

Hi Patricia, I am just commenting now - I have reading for sometime though and always have Jonah and you in my thoughts.

I can honestly relate to your fears over a feeding tube. My little brother has Treacher Collins Syndrome and began to fell behind on eating around Jonah's age and my parents agonized over a tube and in turn it was God's plan that it happen and His will that it helped.

While my broher and Jonah are differnet they are both special in God's eye and what is meant to be will be!

Breathe, and enjoy your baby!
Tamar

Janel Waters said...

my computer had a stroke last night before I had a chance to read your blog - I was totally crushed when I saw your title just now.

I am praying praying praying praying... I will certainly be thinking of him and praying for him as I have my swallowing test next week!!

Please feel free to call me/email me if you want to talk about it from an EB patient perspective.

praying for Jonah's eating, praying for you and Matt also!!

Janel

Elle said...

Prayers for all of you, sweet girl. Hang in there. He is precious, and a precious gift. I look at those gorgeous blue eyes over those sweet chubby cheeks and cannot see anything but the miracle he is. You just hold tight to your faith in the Lord that he will get your family through this with whatever solution is best for all of you.

Anonymous said...

Prayers and love coming to you right now. I am praying. Jennifer in Southeast, NC

jenlar3 said...

Jeremiah 32:27 "Behold, I am the LORD, the God of all flesh; is anything too difficult for Me?

Jeremiah 33:3 "Call to Me and I will answer you, and I will tell you great and mighty things, which you do not know."

Praying for you, Matt and Jonah.

Jenn said...

I can't imagine what you are going through...constantly praying for you guys and little Jonah.

Laura said...

Praying

Happiness is Here! said...

Your amazing and I have been praying for you from the moment I found your blog! You will get through this! Praying for you always!

godfrey said...

praying daily

Beverly Wooley said...

Praying for our precious Jonah and for you as well, sweet girl! Sending love to you all.

Anonymous said...

You are a wonderful Mommy. I know that you are doing everything within your power to care for your precious gift.

Please know that your family is in my prayers!

Janelle said...

I found your blog through Kelly's Korner and pray for your family all the time. I just wanted you to know that you are a wonderful mother. I'm sure no matter what you do you will do the right thing.

Tasha said...

Praying for you and for Jonah!

Les said...

Praying for him!
Can he eat food soon?

Anonymous said...

I cant immagine how difficult this must be. I am praying for peace in your heart and that God will make a way for Jonah.
-Laura, mom of 3

Sean, Ashley and Kyla said...

Sending prayers your way! I hope tonight is better than last, and that tomorrow continues to be better for you all.

Anonymous said...

Praying for Jonah and your family.

Jill

Irisheyes143 said...

Praying that he gets through this. Praying for an easier "solution" (like it's sores that heal or just increasing reflux).

Praying for strength as you make your decisions. I cannot imagine how tough it must be!

Michelle said...

Heavenly Father,

I want to thank you tonight for creating such a wonderful little boy. Lord, Jonah IS fearfully and wonderfully made...and YOU are awesome beyond words to have created such sweetness and smiles in a little adorable boy! I praise you, Lord for Jonah and his parents.

Father, I come to you right now asking for healing for Jonah. I know that You love him far more than we do, even more than his parents. I ask you tonight, if it be in Your perfect will, to bring healing to little Jonah. Father, I pray that you do the miracle that only You can do. I ask that you help Jonah to eat. You know EVERY cell in his body. You know exactly how Jonah was knit together. Please, heal those cells. Please, help Jonah to eat so that he doesn't need a g-tube.

Father, if this healing is not in your will, I pray that you will send the peace that only you can bring to his parents. Help them to lean and love on You. Give them the hope and encouragement that they need.

In Jesus' precious, holy, healing name I ask these things. Amen.

KK said...

Praying

Elisabeth Bishop said...

Praying for you and Jonah

Anonymous said...

Patrice and Matt and Jonah,

Praying that today is an awsome day! Praying this morning that Jonah takes his whole bottle. And that God wraps his arms around you all today.

Love,
Nurse at Wake Forest Hospital and fellow Pinedale member!