tag:blogger.com,1999:blog-8191367444095035928.post3630821698129315377..comments2023-10-07T07:56:14.379-04:00Comments on Before The Morning: back in the hospitalPatricehttp://www.blogger.com/profile/06865294910862077812noreply@blogger.comBlogger78125tag:blogger.com,1999:blog-8191367444095035928.post-32604901437373868772009-04-13T14:37:00.000-04:002009-04-13T14:37:00.000-04:00Your extended family in little Washington is think...Your extended family in little Washington is thinking of you. Love, Tony, Amy & MaconAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-64825716034964478382009-04-13T14:25:00.000-04:002009-04-13T14:25:00.000-04:00Paying for little Jonah. Sorry, I don't know anyt...Paying for little Jonah. Sorry, I don't know anything about scopes or the procedures. :SAlishahttps://www.blogger.com/profile/00774816386867888752noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-10170120900642184272009-04-13T14:16:00.000-04:002009-04-13T14:16:00.000-04:00Your courage and faith have touched my heart. May ...Your courage and faith have touched my heart. May God abundantly bless you with hope, strength, and wisdom. Praying for all three of you...<BR/><BR/>Brooke Coyle<BR/>Franklin, TNBrookehttps://www.blogger.com/profile/03206098414661671759noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-77184220121498474892009-04-13T14:00:00.000-04:002009-04-13T14:00:00.000-04:00I pray for Jonah and you and Matt every day. I'm ...I pray for Jonah and you and Matt every day. I'm so sorry that you've felt so frustrated...I will pray for peace and strength! God is good, and He IS THERE, even if He feels so far away. (((hugs)))<BR/><BR/>Ann in SCAnnhttps://www.blogger.com/profile/07856221825880891809noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-40383626661927503872009-04-13T13:31:00.000-04:002009-04-13T13:31:00.000-04:00I just found your blog. Between reading this post...I just found your blog. Between reading this post about Jonah and reading your "About me" about Gabe, I know you've been through and are going through a lot. <BR/><BR/>I wanted to offer up HUGS to you and Prayers and Positive Thoughts for your beautiful son. My heart aches for you. I hope he's ok.Nancyhttps://www.blogger.com/profile/17774843453127963426noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-65273429799603190412009-04-13T13:13:00.000-04:002009-04-13T13:13:00.000-04:00here is the website i mentioned in my earlier comm...here is the website i mentioned in my earlier comments just in case you didnt see it. it offers a way to get in touch with other eb families and learn how they coped. and it also has information on care of eb patients as well. just thought it would be helpful. <BR/><BR/>http://www.ebinfoworld.com/<BR/><BR/>lots of love, prayers, and hugs to you and yours.<BR/><BR/>TinaTribulationhttps://www.blogger.com/profile/03912085100941083091noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-10465293581839190932009-04-13T13:02:00.000-04:002009-04-13T13:02:00.000-04:00we are praying all the way from Okinawa, just thin...we are praying all the way from Okinawa, just think your day in my night so I can easily cover you in prayer through the nights, adding you to my blog reader so I can keep up on your current prayer needs!!!!L2Lhttps://www.blogger.com/profile/05349477126145916649noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-56069188280175514632009-04-13T11:49:00.000-04:002009-04-13T11:49:00.000-04:00I was wondering this morning how I found your blog...I was wondering this morning how I found your blog? I don't remember. But God directed me here to pray for Jonah. I pray for him throughout the day and will continue. I wish I could hug your little guy. He is precious.MITZIhttps://www.blogger.com/profile/11940999440296903495noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-33543120117425471192009-04-13T11:11:00.000-04:002009-04-13T11:11:00.000-04:00It's Carolyn from Greenville, now in Greensboro. I...It's Carolyn from Greenville, now in Greensboro. I wanted to let you guys know that you've all been in my thoughts since I found the blog. Please let me know if there is anything I can do to help you out. I know you're probably getting tons of offers, but I'm close by, so let me know even if it's just someone to come by and be there (I'm still in school so I have free time during some days). I love you guys.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-63048798339327686672009-04-13T10:06:00.000-04:002009-04-13T10:06:00.000-04:00Have you discussed the possibility of GERD (reflux...Have you discussed the possibility of GERD (reflux) with your doctors? It is quite common in infants and very treatable. My 8 month old has it and when she was in her first few weeks it was so bad that she would have some of the same symptoms you have described with Jonah. She choked often and her milk would come through her nose like that. We had a couple of ER visits because it got so bad that she stopped breathing once due to the choking. Who knew reflux could cause respiratory distress? Anyway, I felt led to share this with you as something you may want to ask your dr. about. I am not a dr., however, if Jonah's recent distress is the result of reflux, it could be treated and bring him more comfort. Reflux also causes pain which I know Jonah does not need any more of! My daughter refused many feedings because of the pain in her esophagus from the reflux. Just something to consider from one concerned mama to another. I'm praying for you and Jonah!Kristenhttps://www.blogger.com/profile/05251754396325336117noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-30253492286039595472009-04-13T09:56:00.000-04:002009-04-13T09:56:00.000-04:00Patrice,With our first son who had junctional EB w...Patrice,<BR/><BR/>With our first son who had junctional EB we did a scope. We had been flown from SD to Texas to see Dr. Levy who is a dermatologist who specializes in EB. Ours was done in at the hospital we were in in Houston. He had an ENT do it that was familiar with EB and had done them before in EB kids. They did it in the OR. We don't regret having it done. He had quite a bit of involvement there and we may have caused more having it done but we just needed to know and felt better knowing. Knowing why we had feeding issues, all the noises, and so forth. Never second guess yourself on making decisions or on decisions you already made. Pray about your decisions as I am sure you already do. We do not regret anything we did with either of our boys. I am a known worrier so just knowing helped me so I was not as stressed out. And as I am sure you already know the airway is a big concern for JEB. So for me it was good to just know how much involvement there was for our son. Hope this helps. Praying for you, Matt and Jonah.<BR/><BR/>In Him,<BR/>Tashia UkenStuart and Tashia Ukenhttps://www.blogger.com/profile/08236928829814259323noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-28172549106924105042009-04-13T09:50:00.000-04:002009-04-13T09:50:00.000-04:00Ongoing prayers continue for your family and littl...Ongoing prayers continue for your family and little Jonah.Jennayhttps://www.blogger.com/profile/02177274444764949312noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-55105719792563532622009-04-13T09:18:00.000-04:002009-04-13T09:18:00.000-04:00Happy Easter! I am so sorry that Jonah is back in...Happy Easter! I am so sorry that Jonah is back in the hospital but I hope that the end result is an answer to some of his respiratory and feeding issues. I know that Junctional EB has a lot of this and your little Jonah is in my prayers each and every day. May God lift him up and heal him.<BR/><BR/>Karen in BostonUnknownhttps://www.blogger.com/profile/09797428746207900537noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-13208827948505472282009-04-13T08:49:00.000-04:002009-04-13T08:49:00.000-04:00Patrice-I have been thinking and praying for your ...Patrice-<BR/>I have been thinking and praying for your family even since I stumbled upon your blog. I am a pediatrician in a different state, but have taken care of two kids with severe dystrophic EB. I am not sure what your current dr's are thinking where Jonah's lesions are or what is the issue or what the goal of scoping would be, but instead of a scope we were able to use airway fluoroscopy and CT scan to evaluate airway narrowing. Like I said, I don't know if this would be option for you or if would give the same information that a scope would - but it was a great option for us here. (The scope was only performed after CT determined a need for a trach - now the child is scoped repeatedly but through the trach). I hope this gives you another insight!<BR/><BR/>GMAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-22749560130836571592009-04-13T08:20:00.000-04:002009-04-13T08:20:00.000-04:00:(:(Stephaniehttps://www.blogger.com/profile/16949471213153043914noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-37604296107624455872009-04-13T07:30:00.000-04:002009-04-13T07:30:00.000-04:00Praying for Jonah, you and Matt - I'm so glad God ...Praying for Jonah, you and Matt - I'm so glad God has given you an EB community to help you as Mom along the way. YOU are Jonah's parents because God knew he needed you! Thanks for the updates,<BR/>continuing to pray in Michigan.Kim Mhttps://www.blogger.com/profile/08352489657428563463noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-18803251091954863872009-04-13T05:49:00.000-04:002009-04-13T05:49:00.000-04:00Praying, praying, praying for your family!Praying, praying, praying for your family!Nicolehttps://www.blogger.com/profile/11265569277353954240noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-39657434238023434972009-04-13T01:53:00.000-04:002009-04-13T01:53:00.000-04:00If your ENT doesnt' get a hold of the Cincinnati d...If your ENT doesnt' get a hold of the Cincinnati docs, you can call yourself and ask the nurse what their normal protocol for EB babies is. I talked to them at length before transferring care from the local ENT and they were great. They even helped me get around some of the politics and other sensitive issues when you have both a local ENT and an "expert" out of state. Best of luck.Anonymoushttps://www.blogger.com/profile/07895348440807433467noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-61622878124866506532009-04-13T01:41:00.000-04:002009-04-13T01:41:00.000-04:00So sorry that you are in the hospital again, but i...So sorry that you are in the hospital again, but it does make a difference when you can stay with your baby. My baby had to be scoped twice for similar problems and ended up having surgery. We opted for the non-surgical scope prior to her larger surgical procedure. It could be done in the office and was VERY fast. She was awake and easily soothed afterward. She does not have EB so I know that makes a difference but I thought I would at least let you know what we did. Praying for you.Alisahttps://www.blogger.com/profile/00687902252732942947noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-61320850386411859722009-04-13T00:57:00.000-04:002009-04-13T00:57:00.000-04:00We are in cincinnati about a mile from the childre...We are in cincinnati about a mile from the children's hospital our home, car and any resources we can share are available.<BR/>My neice had 2 ent surgeries there. My email is Lyzdietz at yahoo.com.Dovenoirhttps://www.blogger.com/profile/16660571016921168913noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-52976745574900475262009-04-13T00:46:00.000-04:002009-04-13T00:46:00.000-04:00I love what Channe said! - That out of everyone on...I love what Channe said! - That out of everyone on this earth he picked YOU and that he has been preparing you for this since your birth! What an amazing concept! Take heart in that and that God is a sovereign God! We are praying, praying, praying for you guys!Mike and Molly Spiveyhttps://www.blogger.com/profile/12598644248376270029noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-17809771171693248362009-04-13T00:27:00.000-04:002009-04-13T00:27:00.000-04:00I've been thinking about you all day. Was glad to...I've been thinking about you all day. Was glad to see you posted today after you were so down yesterday. Sorry to hear that Jonah is in the hospital, but hopefully this will help you get some answers to what is going on. You are in our prayers! Praying that you get some rest and that the doctors have the wisdom to treat Jonah appropriately to get some answers.LisaLhttps://www.blogger.com/profile/05271092686861372345noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-53633331436250350522009-04-13T00:03:00.000-04:002009-04-13T00:03:00.000-04:00I don't know anything about EB, but I do know ...I don't know anything about EB, but I do know that out of the 6.77 billion people (yes, I looked it up on Wikipedia) on this earth, that God picked YOU to be Jonah's mommy. He has been preparing you for this since YOU were in your mother's womb. Patrice - He will give you wisdom & strength beyond measure. Praying in Louisiana - The KarabasChannehttps://www.blogger.com/profile/06915521476254081395noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-11538847450492480822009-04-12T23:52:00.000-04:002009-04-12T23:52:00.000-04:00Get some sleep kitty, and be strong for your littl...Get some sleep kitty, and be strong for your little love in the morning. This must be God's way for you to get a little more rest, and for Jonah to be where he needs to be for the moment. love you all, and prayers too. KathyKathyL.noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-7697979117998117142009-04-12T23:49:00.000-04:002009-04-12T23:49:00.000-04:00I am so sorry you guys are back in the hospital, b...I am so sorry you guys are back in the hospital, but I hope you can rest assured knowing that everything is ok. <BR/><BR/>I pray for wisdom as you guys decide what to do with Jonah. I pray for God to direct the hands of those working with him.<BR/><BR/>Take Care,<BR/><><Staceyhttps://www.blogger.com/profile/01046531417632879105noreply@blogger.com