Thursday, October 22, 2009

jonah update

Just a quick update tonight -

Jonah has struggled again today, but it was a slight improvement over yesterday. I'm not sure his total ounces, because Matt's feeding him now as I type this up in his nursery. I don't think he'll hit twenty. He has done better with solids today. He probably ate about two ounces total - apples, yogurt, peas, squash, sweet potatoes, more yogurt, mango. We tried it all. He actually opened his mouth about ten times for the yogurt which was so great! He hasn't opened his mouth for solids yet (except maybe a few isolated bites) until today. True, it was just for the yogurt, but it was something. I was so proud, I kept saying, "Good job, Buddy. You did it!" over and over again, and then he smiled at me, and then I started crying. I know he thinks I'm completely mental. Maybe I am. :)

I did speak with Dr. B, his pediatrician, today, and she agrees with me that things aren't looking good. The home health nurse came and weighed him again today, and it's the third week in a row that he hasn't gained weight. Dr. B is very concerned by this. He's definitely teething (two teeth coming in!), but she said it shouldn't be affecting his eating this much. She had a sense of urgency about her that just validated everything I've already been so concerned about. In a way, it was good to know we're on the same page. On the other hand, I wanted her to tell me how crazy I was, that he's doing great. I knew the truth before she said it though.

So where are we now?

She's working to get his GI appointment moved up (he wasn't scheduled for another one until Dec 2nd), and we're both trying to do research about EB kids and g-tubes. I'm going to email his dermatologist in Chapel Hill and see if there is a pediatric surgeon there who has done a g-tube on an EB child. The EB registry used to be in CH back in the day, so I'm hoping some of those docs will still be there. I think it would make me feel better if it was a surgeon who knew a little something about EB. If it were up to me, when the time came, we'd be on a plane to Cincinnati (where the EB clinic is) to get it done there, but there's no way I'd put Jonah on a plane right now. Talk about germs!

We're still hoping and praying for a miracle, but from talking to Dr. B on the phone today, I'd say we don't feel like we have much time left. I don't want to give it too many more weeks. We're on week four now of no weight gain, and I don't want him to keep falling behind.

He's already on 27 to 30 calorie per ounce formula, and he's still gushing every couple days, so I'm hesitant to put any more junk in his bottles. It seems his tummy can barely handle what we're already giving him.

So anyway, that's where we are. Thank you so much for praying. I attribute today's solids "success" to all the prayers going up for him. Please keep it up! I had moments of feeling peaceful about the whole g-tube thing today and moments of terror and crying. I know God is in control and that my plan isn't His, but it's still a little lot hard to swallow at times.
****************************************

Matt's enjoying working on your questions, but only has time to answer a few at time. He said he should be able to finish them all up this weekend. He's trying to answer all of them, so it's taking a while. :)

****************************************

Thank you for praying for Jonah. I don't know why it keeps surprising me how much he's loved and how many prayers are going up on his behalf, but I continue to be amazed. You'd think I'd be used to it by now, but nope. STILL COMPLETELY BLOWN AWAY.

Thank you from the bottom of our hearts.

72 comments:

Anonymous said...

So glad you had a few moments of feeling at peace today. Praying in SC for Jonah to eat, and for you & Matt - for guidance, wisdom, and peace.

Anonymous said...

Praying in NJ for Jonah to eat! : )

Anonymous said...

I am praying for little Jonah and for you and Matt as well. I cant imagine being in your shoes. You amaze me with your strength. Jonah is such an amazing little boy. Our prayers will continue to go up for Jonah today, tommorow, and in the years to come!!!
Angie, NC

Tina said...

I have been reading for a long time, but never left a comment. I have a 10 month old little boy who hated food almost as much as your little Jonah. I know in your last post you said you didn't want advice, so take it or leave it. The first thing I got my little man to eat was baby cereal with juice mixed in it. All of his fruits, if I add a little rice cereal or the whole wheat kind, he will eat it.
I am praying for Jonah.
~Tina

Heidi said...

Jonah and your family are in my prayers. May God heal his insides so that he may eat and thrive.

Anonymous said...

So glad Jonah liked the yogurt. It's smooth, sweet, and calorie laden- so I am glad to hear that is what he liked. I am sure you are blown away, but your little boy is very special and anybody reading your blog falls in love with him. I will keep praying for Jonah as will everyone who has the privelege of knowing him (so to speak).

Prayers in CT!

Beth said...

Continuing to pray for you all in SC!!!

lifelaughsandlove said...

Keeping all of you in my prayers! It's great to hear about the small victories. Praying for wisdom and peace for you during all of this!

~Amy

Anonymous said...

It's so obvious how greatly your sweet family is loved. The outpouring of love and repsonses from yesterday's post is proof of it. And most of it coming from folks who have never met you...amazing! Jonah has captured our hearts. Praying that God will give you discernment and a sense of peace and calm as you walk whatever path He lays before you.

Terah722 said...

Still praying hard!!! I'm sure I can speak for many of your blog readers in that we feel as if we know you and want to do what we can to fight this battle with you. Eat Jonah Eat!

Is there anything you can stick in the yogurt to fatten it up even more? Flaxseed oil or something? Get the most bang for your buck (or bite)! :)

Jen said...

Praying for your baby boy to get the nutrition that he needs to gain the necessary weight.

Rachael said...

Praying for Little Jonah and also praying for wisdom and peace for you!

Courtney Roth said...

So glad he did a little better today. Once again, I know you would like to get on a plane to Cincinnati, but we knew just like you guys that it wasn't a good idea. We had all of our doctors here call each specialist personally and it helped us so much. You would be surprised at how willing they are to talk to your doctors. The ENT there emails me and tells me to give little Tripp a kiss and hug for him!! They are so nice!!
Still praying hard!!
Oh yeah, we brought Tripp straight to the ER when he wasn't eating.. That way we skipped waiting on doctors appointments.. I know that stinks. And I know the hospital is really intimidating, but usually the nurses and doctors are so nervous when they see all the bandages, that you will be doing complete care on him anyway!
PLEASE let me know if I can be any help at all! I'd live to talk with you but I know you're busy and I totally understand! Take care girl!
Courtney Roth

Shuggamom said...

Thanks Patrice for posting an update on everyone's precious Jonah, we are all standing in the gap with prayers and thanksgiving for GOD'S love and care for your family! Hoping everyone has a peaceful and refreshing nights sleep!
Love,
Stacey
East Texas

Anonymous said...

I am praying for Jonah and your family.
FROGing in Louisiana

Kelli said...

We truly do love sweet Jonah and are praying with you for a miracle. In the mean time, we'll continue to pray for weight gain and for wisdom in making the right decisions for his care!!! Thanks again for sharing him with us!

Marci said...

praying in Ontario Canada.

Sewconsult said...

Continuing to pray for all of you. I hear the anxiety in your words. I wish I could wrap an internet hug around you & give you comfort.
Beckie in Brentwood, TN

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

My Sunshine, My Angel and I spent the day fasting and praying...I have seen Him listen to our prayers when we do. We will continue in prayer.

Anna said...

Eat Jonah, EAT! Please God, please let Baby Jonah fill his belly and keep it down. Please just even for a day to give his poor Mama just a little peace of mind.

My heart goes out to you. I'm a Mama and I know how much you mentally struggle when your baby doesn't eat. Top that with EB and I'm in tears for you too.

God, please hear our prayers for Jonah tonight....

(BTW, my son spit up a lot when we tried upping his calories in his bottle. Could that be causing all his puking by chance?)

Lauren said...

Praying for you guys and for wisdom for the doctors...

And we'll be coming through that way next Sunday. I'll call you later on and catch up :)

Laura A said...

Glad the yogurt went well (it's the little things that mean so much!)

Am still praying for Jonah to eat and be nourished, and that you and Matt will have the wisdom to make the right decisions in the right time.

Much love from TX!
Laura

Anonymous said...

It is an honor to pray for your sweet family. I will continue and thanks for sharing. Keep up with the doctors. Jennifer in Southeast, NC

Just Me - MJ said...

Still praying for you all. It's positively awful when you can't get your child to eat (and so few people understand that).

Take care & hang in there.

K said...

I know it's a terrible feeling where your little one doesn't gain weight. To see our babies grow is the first single thing we use to measure our success in nurturing out children, isn't it? You are doing so well and have come so far in such a short time. I will pray for Jonah.

I don't know how you feel about advice, but I will risk offering you an idea since surgery is a serious matter. Besides the pain Jonah might feel when he eats and the oral aversion he may be developing because of this, he also may not feel hungry because of all the times per day that he takes a bite or suck or two, which may take the edge off his appetite. There are a few drugs, and I'm not sure they are safe for babies so you'd have to check, that increase appetite. Cyproheptadine is the one I'm most familiar with. Of course, you are also dealing with the reflux, but perhaps if Jonah could manage his part and just EAT then you can manage the intervals and calories so that the reflux can be, hopefully, controlled. There are also dietary enzymes that can help digest the food faster so that the nutrients are absorbed before they can come out one end or the other. I can't remember if you've been hooked up with an infant nutritionist, but I would really fight for one if you have not. Pediatritions don't have a lot of training, if any at all, in nutrition in medical school and are often not aware of the many special things that nutritionists know and have access to.

A nutritionist can also show you which foods have the most calories and work synergistically with each other for the highest nutritional level with the least amount of food. There are also websites like wholesomebabyfood.com that have great ideas. I used this website to help make cereal to stop a baby's two week bought with diahrrea. A nutritionist will also know of ways to prepare food that will make is the most palatable, digestable and more nutritious.

Again, I will pray for Jonah, that he will feel hungry and eat and love it.

Swampgirl said...

I have been praying for Jonah and both of you everyday! I went to school in Kernersville then on to Chapel Hill. My Mom still lives in Kernersville. When I told her about Jonah she told me that her church was already praying for him!

Anonymous said...

Hi Patrice. I've been following your family since Jonut first arrived.

I saw a link to a coupon for aquaphor and it made me think of little man. It's only for a dollar off but I wanted to share nonetheless. I pray that insurance or donations cover your needs but just in case...

http://bricks.coupons.com/Start.asp?tqnm=qjvtekw78358465&bt=vg&o=55929&c=BD&p=jf6lHDXr

Hope this helps. My family prays for yours nightly. God bless. x

Laura K in Oklahoma

DESJ and Company said...

Hey there.
I've been a lurker for a while. Just want to give my uninvited 2 cents on the g-tube thing. My son Dovi has had a g-tube since he was 4 months old. He has major medical issues, and we spent the first 4 months of his life literally obsessing 24/7 about how much he ate/puked. It was hell on earth. I was constantly stressed out by his eating and obsessive about trying to feed him/avoid the g-tube. We got to the point where we had no choice and he got the g-tube. It was the most wonderful choice we ever made for Dovi. That huge, enormous stress in our lives was totally gone. He grew, he thrived, and was more healthy as his body could stop focusing on calories and growing and onto developmental stuff. Yes, I was sad and heartbroken that he had a g-tube. But DOVI was happier. Eating was so hard and stressful for HIM as well-and it was wonderful for him as well when that stress disappeared.
And having a painless way to give meds? priceless :)
Good luck in this hard decision.

Jill said...

Hoping and praying that you both have a better day tomorrow.

Erin said...

Praying in Idaho.

Jess and Krissy said...

Thankful for good news, no matter how small. Still praying!!!!

Anita said...

My thoughts and prayers are with you, Matt and Jonah. I've seen first hand what you are experiencing by watching my daughter Courtney pray for the exact same thing for her son Tripp(who also has JEB). Her prayers were answered in the form of an incredibly gifted team of doctors who performed that surgery without removing his bandages and without putting a single new mark on his skin. They treated Tripp like a little king!! With all of his mouth sores, blisters and teeth,that g-tube has been a blessing from God!!
I so admire your strength and your sense of humor. I pray that your prayers are answered in a way that is best for your family.
Anita

Stacy aka Fahiima said...

You can always see what your pediatrician/nutritionist thinks about adding extra virgin coconut oil to his formula for extra calories. it is already the main source of saturated fat in formulas and is actually really good for the immune system as well.

praying for Jonah...

Kristi in Colorado said...

I am praying so, so hard for Jonah, you and Matt. I don't know you, but think of you so many times every day. I am sure there isn't much else to try and you probably don't want anymore suggestions, but I thought I would run this by you anyway. This will probably sound totally nutso, and I am guessing his eating of solids has absolutly nothing to do with taste at all, but could you try adding a little sugar to his solids? I know you said he opened his mouth for yogurt, which was probably somewhat sweet. Again, sounds crazy, 99% sure it wouldn't work, but I keep thinking that. Anyway, now I feel nuts even suggesting such a thing! =) Try to get some sleep tonight.

Barbara said...

Prayers for Jonah and his loving parents...

Linzbaby1 said...

Hi there! I've been praying for your family since he was a wee little Jonut... (a Jonut-hole perhaps?). I don't know if this would help at all, but I figured it's worth a shot letting you know my experience. My daughter, Sierra, was born with a very severe cleft lip and palate. She is 13 months old, and has had two major surgeries and tons of procedures in her little life, with more in the future. Her most recent surgery was at 10 months, to close up her palate. During that surgery, they also had to pierce her tongue, in case there was swelling and they needed to get her tongue out of the way fast to intubate, without damaging her newly healed palate. So, pretty much I had a 10 month old (who was physically and developmentally more like a 5 month old at the time....was just starting to roll over), whose roof of her mouth, into her throat, was completely raw, and her tongue was swollen up huge from the piercing. She refused everything.... all formula, all stage one or two baby food, all juice....everything. So, it got to the point of finding something that, as I put it, "tasted better than it hurt". For a month or so, my little peanut existed on Vanilla Milkshake flavored Ensure (she even refused pediasure). It was super high in calories for her, but she needed the extra calories to help her heal at the time. I would mix it 1/2 formula to 1/2 Ensure. I was so beaten the night I went to the store, and I bought every sweet flavored liquid I could find, just to get some nutrition in this kid. I figured desperate times call for desperate measures, and sometimes you have to throw all baby rules out the window.
Also, I had talked to an adult who had the surgery (as an adult), and she told me that neither cold nor warm felt good to raw skin in her mouth. She said to get the bottles as close to room temperature as possible, and SIerra really seemed to respond to that.
Just wanted to share my experience with you. I know that EB is different, and I have learned so much about it from following your, and Sam's journeys, but I thought there might be some commonality in the wounds in the mouth and throat. Please know you guys are awesome, Jonah's a rockstar in my house (all 3 of my children who can talk ask for updates everyday from me ), and you are totally in our prayers.

Mommyto3 said...

If you come to Cincinnati, let us know. We'll bring you some Chick-Fil-A. Yum Yum Goodness!

MarlaW said...

Hi Patrice,

I just wanted to let you know that I am constantly thinking about you and praying for Jonah. What an inspiration you are to us all. I also wanted to share with you that my 6 mo old has not wanted to drink his formula since starting on solids. We fight to get him to drink 15 oz a day. Of course, I am worried, always offering him bottles and trying to get him to drink but the doctor is not too concerned. Now, granted, my son does not have EB and is gaining weight just fine, so I know this is a more serious issue with Jonah. But I just wanted you to know that you are not alone and that other mothers are having the same feeding struggles. I will continue to pray for Jonah that his g-tube appointment can be moved up.

Marla in PA

Linda said...

Hi Patrice:
Still praying for Jonah and hoping you make the right decision about the gtube. Sara told me that quite a few eb kids have gtubes and the parents think it's the best thing they did for their child. Do your research and hang in there. You have so many people praying for you guys. Take care. Leah's Nana

Heather said...

It's heartbreaking to know you are going through so much and that Jonah isn't gaining weight. Praying for wisdom for you guys as his parents and for the doctors. Also praying for peace for you guys.

Carol said...

Continuing to pray for Jonah. I hope you find all the answers to your questions on gtubes for EB babies and pray you find just the right doctors who are kind, patient and knowledgable. Oh, and God, if you could please help Jonah just start eating so he doesn't have to go through the gtube thing at all, that would rock!!! AMEN

Lis said...

Just a thought here... If commerical airline is not an option, please check into "Angel Flight", "Pilots for Christ" or some other non-profit organization. They have volunteer pilots, private planes, etc. It is the most amazing organization and I would just bet they would be willing to help Jonah.. Let the Lord lead you but if you feel you need to be at the EB clinic, go for it! Love you and praying for you. Lisa, Dothan, Alabama

M J said...

Praying for Jonah lots! :) Out of curiosity, what kind of spoons are you using to feed him solids? Is there a special kind of spoon to minimize the friction in his little mouth, or are you stuck with the average baby spoon?

Anonymous said...

Praying for Jonah (and you & Matt).

Thomas and Jamie said...

Praying in Amarillo, TX for little Jonut! But, praying for you and Matt as well. Remember Psalm 27:1 - The Lord is my Light and My Salvation, Whom Shall I fear? The Lord is the Strength of My Life. Of Whom Shall I be Afraid?

And, if you want to scream, that's okay too!

Tonya said...

So glad he has done better on solids today and "just yogurt" .. no such thing.. yogurt is awesome and the fact that he is eating anything is a big deal!! Congrats to him.. continued prayers :)

Whitney said...

You are an amazing family. I am sending lots of prayers your way.

DonnainNC said...

I don't know if you've ever checked out this link: (www.careforanabella.blogspot.com)
about this baby, but she just had a g-tube put in and her dad is so encouraged by it and how much easier the feedings are going (not to mention the time saved and not worrying over every little ounce). I know it's a tough decision to operate on your precious baby, but it may be worth it to save your sanity (maybe even his life). You've done so good getting him this far without one. I know miracles can still happen and he could still be completely healed, but until then, do what you have to do to keep him healthy and growing.

Praying for yall.

erika said...

Prayers for sweet Jonah's eating and clarity for you and Matt on a decision. You are his parents and you know what's best for him. You are the most wonderful advocates and it shows. We will keep you all in our prayers.
love from IL

Anonymous said...

I just want you to know the strength I gain from reading your story. You teach me that anything can be handled with love, honesty and focus. The world can be a scary place, but no matter the situation, there will be wonderful moments. Thank you for this lesson. Jonah is a gift to us all, as are you and your willingness to share your journey.

Anonymous said...

Patrice,

I am so glad you are using Dr. M at UNC. He was my daughter's dr and he is such a dedicated physician. We did not have complicated issues but you could tell he cared about his patients. Good luck as you take your next steps on this journey.

Anonymous said...

WE LOVE YOU!

praying on our knees!

LOVE ERICA

Meg said...

Praying for Jonah day and night (the night is in a bit of a stupor, but God still hears right? ;) )

You are doing awesome, everything the best you can for your little man who is sooo cute more and more everyday :) Keep it up!

Irisheyes143 said...

Still praying. If you come to Cincinnati - please post. We are here & my kids love checking pics of Jonah. (my daughter was that one that wanted to send the giraffe blanket to him!) We'd love to help in any way we can!

Meesh in MO said...

I am praying for dear Jonut. Right now, I somewhat feel his pain on mouth blisters. I got put on a new pain med that makes my mouth very dry. I'm assuming because of this, I have an ulcer/blister on the end of my tongue. It hurts so badly that it is making my bottom teeth hurt and they are fine.

I know you are scared of a g-tube, but I have a slight medical background. I am a CNA, but have only ever worked with the elderly. I know a g-tube can be the difference between life and death for that age group. Have they ever determined if Jonah has his gushers because of nausea/perhaps allergic reaction, or if it's a physical defect such as the flap at the end of the esophagus not closing? I knew a baby with that defect and he looked like a fountain several times a day. He is a healthy hefty 23 year old now.


I also wanted to tell you that I moved from NC to MO last month and as I was driving through your part of the state I prayed for Jonah the whole way.

Much Love from MO
Meesh

The Sierra Family said...

still praying for you guys. as hard as it may be, try to remember that God is holding Jonah in His hands-- there is no safer place for him to be.

Jessie said...

don't know if anyone has mentioned yet or not, but if you really wanted to fly him somewhere, there are oraganizations that can provide private services. Angel Flights is one i've heard of. you are in my prayers!

Anonymous said...

Praying for sweet Jonah and you and Matt too! Yay that Jonah ate yogurt. Yum! I hide a lot of veggies or fruits in yogurt. :) YoBaby just came out with 3-in-1 meals that are yogurt, fruit and veggie all mixed together.

Aimee said...

Dear sweet Patrice, baby Jonut (and Matt): We are still praying! We love you guys! Kiss that sweet head for me...head, I said, not bum:)
Hugs! Aimee

Lydia said...

Please know that you can add the Tatum family to your list of people praying for Jonah and your family. We have been praying since we came across your blog about two months ago.

Jenny said...

Praying hard for you guys.

Anonymous said...

You don't know me and I have read your blog a few times through other peoples blogs... I find your family inspiring and pray for you or think of you guys... You are NOT ALONE. I want you to know my "twin b" has a g-tube. She didn't FINALLY get it until we through the towels in at 7 1/2 months. I have twin girls that are 10 months old in AZ. They were born three months early...despite all that one child is perfectly healthy and Baili has probably 10 doctors I won't bore you with. The g-tube is 100% BETTER than the N-G Tube. We had that for 7 1/2 months. Praying that she would get off it and just eat a bottle like everyone said. They were wrong. She still hasn't sucked from a bottle. She has a G-I doctor that is WONDERFUL!!! She now see's a food specialist every tuesday (Speech Therapist) and she actually eats! Small bites like 2 to 5. But before we would touch her lip and she would vomit all over. She used to vomit 10 to 20 times a day and wanted her on 24/7 feeds on the g-tube. I am a calm nice person but sometimes all this makes me crazy and I wanted to hit him (the doctor) in the face. Josh their daddy is calm as always and took another road. Anyway I just wanted you to know the g-tube is safe and my daughter is SO MUCH HAPPIER!!!!!!!!!!!! Plays, talks, cause she is full. Think if you were hungry all the time but it hurts you to eat??? I want you to know you are NOT ALONE. It is hard every day for us. It is hard. But it is the best thing for your son if that is what they say. I promise. Check out popsicle.org it really explains a lot. I never do this but if you want you can email me about anything at brownell.kate@gmail.com

The twins Mommy,
Katie

The Brownell and Ideker Family said...

Hello Family,

You don't know me and I have read your blog a few times through other peoples blogs... I find your family inspiring and pray for you or think of you guys... when it gets tough in my house and I think "I am not alone."

You are NOT ALONE. I want you to know my "twin b" has a g-tube. She didn't FINALLY get it until we through the towels in at 7 1/2 months. I have twin girls that are 10 months old in AZ. They were born three months early...despite all that one child is perfectly healthy and Baili has probably 10 doctors I won't bore you with. The g-tube is 100% BETTER than the N-G Tube (down the nose to the stomach). She has never eaten a drop of a bottle ever. For four months it would penitrate into her lungs which can cause nemonia and kill you. We had that for 7 1/2 months. Praying that she would get off it and just eat a bottle like everyone said. They were wrong. Once she passed her swallow studies which she did before her sister... She still hasn't sucked from a bottle. She has a G-I doctor that is WONDERFUL!!!

She also now see's a food specialist every tuesday (Speech Therapist) at Phoenix Children's Hospital only 2000 a visit. Thank GOD for insurance!!!And she actually eats! Small bites like 2 to 5. But before we would touch her lip and she would vomit all over us and gag like crazy. She used to vomit 10 to 20 times a day and they wanted her on 24/7 feeds on the g-tube due to weight loss. I am a calm nice person but sometimes all this makes me crazy and I wanted to hit him (the doctor) in the face. Josh their daddy is calm as always and took another road.

Anyway I just wanted you to know the g-tube is safe and my daughter is SO MUCH HAPPIER!!!!!!!!!!!! Plays, talks, cause she is full. Think if you were hungry all the time but it hurts you to eat??? She still vomits. We are working on meds for that. I want you to know you are NOT ALONE. It is hard every day for us. It is hard. But it is the best thing for your son if that is what they say. I promise!

Check out popsicle.org it really explains A LOT and they are so supportive. I never do this but if you want you can email me about anything at brownell.kate@gmail.com

The twins Mommy in AZ.,
Katie

Wanda Wilkinson said...

Patrice, Matt & Jonah,

Prayers are still going up for Jonah to EAT!!!! and for you & Matt to have some peace and comfort. Listen to other (doctors, nutritionist, etc) but do when your heart leads. You have always & you will continue to make the best decisions for that precious boy.

God is till listening & is till on the throne. Has Jonah lost weight these past few weeks or just not gained any.

Maybe he needs some SWEET TEA. He face is looking wonderful.

Always remember even if we don;t know you, we love you & are praying for you.

All of you

Melissa said...

I'm still praying here for Jonah, and for you and Matt. I can see why you're so concerned. I didn't realize until today's post that he hasn't gained weight for a couple of weeks. And since he's been gaining so well his entire little life, it does sound as if things have changed somewhere. I pray that God gives you all favor with appointment times and schedules. And airplanes and airports are not a place I'd want to be, either. Would driving to Ohio be an option? Maybe that's a question that Matt can add to his list.

When my boys were babies, their pediatrician was concerned about their weight gain and had me put heavy cream and/or sour cream in all their food for extra calories, even at six months old. I don't know if this would be something your pedi would want you to do, but it might be a lead you could check into for Jonah. "Every calorie counts," my boys' doctor used to say.

Blessings to you!

jen said...

I've been reading your blog for some time now, sometimes I can't even get thru all the updates without weeping and lifting you up in prayer. Know that the Bellegrove UMC, in Bellegrove Pennsylvania is praying!!

Anonymous said...

Patrice, what a difference a week makes. I want -- we all want -- Jonah to eat, feel better, get stronger. I want -- we all want --you and Matt to get some peace and relaxation. Prayers are going up to God all over the world. They have worked before, they will work again. And remember, you know your baby best. Trust your gut. He is a beautiful baby boy, blessed to be born in your family.
We love you.
Sandy W.

Julie said...

No advice, no strong words. I live with a seizure disorder in my son's life. Sometimes, there is no "right" answer; just the lesser of two evils answer...nonetheless, prayers will go up for you.

Ellen said...

Praying for little Jonah on Long Island!!

Kate said...

Like others, my son has a g-tube and it really was an amazing gift once I got used to him having it. He also has gastroparesis ~ his stomach doesn't contract properly so food just sits there without digesting the way it should, which made him vomit a LOT. Giving him erythromycin with each tubefeed (a tiny amount, but it makes his stomach contract to move food out of his stomach) has helped a lot and keeps him from throwing up. Maybe Jonah would benefit from something like that, as well.

I have no idea what the skin breakdown would be for a little guy with EB, so I'm guessing that is playing a part in your fear/worry and I totally understand that. But like everyone else who has commented, I am praying for your little guy and hoping for things to turn around in the eating department soon.

May God give you peace.

Sarah said...

Make sure they do a button and not a peg...you absolutely cannot have a peg for him.

I would suggest anything but a mic key button. Mini one's are great and mic key compatible. Bards are good as well.

If you need a good tube feeding forum. www.parent-2-parent.com/

(it's been down today....but should be back up in a day or so)....there is a wealth of knowledge there

neala said...

Praying for your family. Jonah's story has touched me and you are the most amazing parents.
I applaud you!
Much love in NH!