tag:blogger.com,1999:blog-8191367444095035928.post616589317112175577..comments2023-10-07T07:56:14.379-04:00Comments on Before The Morning: jonah updatePatricehttp://www.blogger.com/profile/06865294910862077812noreply@blogger.comBlogger72125tag:blogger.com,1999:blog-8191367444095035928.post-1310673369853848662009-10-24T21:30:03.645-04:002009-10-24T21:30:03.645-04:00Praying for your family. Jonah's story has tou...Praying for your family. Jonah's story has touched me and you are the most amazing parents.<br />I applaud you! <br />Much love in NH!nealahttps://www.blogger.com/profile/03264883027552510005noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-88777926149576429212009-10-24T00:40:41.146-04:002009-10-24T00:40:41.146-04:00Make sure they do a button and not a peg...you abs...Make sure they do a button and not a peg...you absolutely cannot have a peg for him.<br /><br />I would suggest anything but a mic key button. Mini one's are great and mic key compatible. Bards are good as well. <br /><br />If you need a good tube feeding forum. www.parent-2-parent.com/<br /><br />(it's been down today....but should be back up in a day or so)....there is a wealth of knowledge thereSarahhttps://www.blogger.com/profile/15035742153838178311noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-83109345290512004042009-10-23T21:12:36.631-04:002009-10-23T21:12:36.631-04:00Like others, my son has a g-tube and it really was...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.<br /><br />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.<br /><br />May God give you peace.Katehttps://www.blogger.com/profile/10184386463890917186noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-38198306874423254322009-10-23T21:11:01.284-04:002009-10-23T21:11:01.284-04:00Praying for little Jonah on Long Island!!Praying for little Jonah on Long Island!!Ellenhttps://www.blogger.com/profile/17943990816917231476noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-32358425206504649442009-10-23T20:01:40.218-04:002009-10-23T20:01:40.218-04:00No advice, no strong words. I live with a seizure ...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.jmhhttps://www.blogger.com/profile/17048044396266414283noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-76663725987039858082009-10-23T19:20:35.871-04:002009-10-23T19:20:35.871-04:00Patrice, what a difference a week makes. I want -...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.<br />We love you.<br />Sandy W.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-44688543873759552302009-10-23T19:11:09.270-04:002009-10-23T19:11:09.270-04:00I've been reading your blog for some time now,...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!!jenhttp://scrapadoodledo.blogspot.com/noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-83035423217214935742009-10-23T18:28:15.125-04:002009-10-23T18:28:15.125-04:00I'm still praying here for Jonah, and for you ...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. <br /><br />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.<br /><br />Blessings to you!Melissahttps://www.blogger.com/profile/06405493740949334737noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-19600226968670499252009-10-23T18:27:32.652-04:002009-10-23T18:27:32.652-04:00Patrice, Matt & Jonah,
Prayers are still goin...Patrice, Matt & Jonah,<br /><br />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.<br /><br />God is till listening & is till on the throne. Has Jonah lost weight these past few weeks or just not gained any.<br /><br />Maybe he needs some SWEET TEA. He face is looking wonderful. <br /><br />Always remember even if we don;t know you, we love you & are praying for you.<br /><br />All of youWanda Wilkinsonnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-35691267357231816612009-10-23T18:00:12.221-04:002009-10-23T18:00:12.221-04:00Hello Family,
You don't know me and I have re...Hello Family,<br /><br />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." <br /><br />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!!! <br /><br />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. <br /><br />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! <br /><br />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<br /><br />The twins Mommy in AZ.,<br />KatieAnonymoushttps://www.blogger.com/profile/03974189068492493892noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-3981873333154208942009-10-23T17:53:38.465-04:002009-10-23T17:53:38.465-04:00You don't know me and I have read your blog a ...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<br /><br />The twins Mommy,<br />KatieAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-3897533436726760082009-10-23T17:53:26.167-04:002009-10-23T17:53:26.167-04:00Praying hard for you guys.Praying hard for you guys.Jennynoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-40837732284468265692009-10-23T17:37:07.110-04:002009-10-23T17:37:07.110-04:00Please know that you can add the Tatum family to y...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.Lydiahttps://www.blogger.com/profile/04290282932711769416noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-14932015642694905402009-10-23T16:12:20.273-04:002009-10-23T16:12:20.273-04:00Dear sweet Patrice, baby Jonut (and Matt): We are...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:)<br />Hugs! AimeeGraimeshttps://www.blogger.com/profile/16373963827515783640noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-38415980468844571292009-10-23T15:36:12.760-04:002009-10-23T15:36:12.760-04:00Praying for sweet Jonah and you and Matt too! Yay...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-59856337622095558132009-10-23T14:29:40.273-04:002009-10-23T14:29:40.273-04:00don't know if anyone has mentioned yet or not,...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!Jessiehttps://www.blogger.com/profile/09799929834644222618noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-34062844366996918852009-10-23T14:27:48.148-04:002009-10-23T14:27:48.148-04:00still praying for you guys. as hard as it may be, ...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.Mrs. Hoothttps://www.blogger.com/profile/06714475529223920538noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-45172034849826807252009-10-23T14:03:48.199-04:002009-10-23T14:03:48.199-04:00I am praying for dear Jonut. Right now, I somewhat...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.<br /><br />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.<br /><br /><br />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.<br /><br />Much Love from MO<br />MeeshMish Meowhttps://www.blogger.com/profile/03726180208740507381noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-72422795952923617002009-10-23T14:01:46.149-04:002009-10-23T14:01:46.149-04:00Still praying. If you come to Cincinnati - please ...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!Irisheyes143noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-68302875096298019362009-10-23T13:44:56.280-04:002009-10-23T13:44:56.280-04:00Praying for Jonah day and night (the night is in a...Praying for Jonah day and night (the night is in a bit of a stupor, but God still hears right? ;) )<br /><br />You are doing awesome, everything the best you can for your little man who is sooo cute more and more everyday :) Keep it up!Meghttps://www.blogger.com/profile/06179428965760512403noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-37435185234668545582009-10-23T12:47:37.472-04:002009-10-23T12:47:37.472-04:00WE LOVE YOU!
praying on our knees!
LOVE ERICAWE LOVE YOU! <br /><br />praying on our knees! <br /><br />LOVE ERICAAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-68242630668096879772009-10-23T12:03:01.498-04:002009-10-23T12:03:01.498-04:00Patrice,
I am so glad you are using Dr. M at UNC....Patrice,<br /><br />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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-64771301943768802392009-10-23T11:57:51.529-04:002009-10-23T11:57:51.529-04:00I just want you to know the strength I gain from r...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.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-25750687100299886152009-10-23T11:56:36.354-04:002009-10-23T11:56:36.354-04:00Prayers for sweet Jonah's eating and clarity f...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.<br />love from ILerikahttps://www.blogger.com/profile/01233460306102041004noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-8099399666861762482009-10-23T11:39:24.139-04:002009-10-23T11:39:24.139-04:00I don't know if you've ever checked out th...I don't know if you've ever checked out this link: (www.careforanabella.blogspot.com)<br />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.<br /><br />Praying for yall.DonnainNCnoreply@blogger.com