tag:blogger.com,1999:blog-8191367444095035928.post7204388674677476940..comments2023-10-07T07:56:14.379-04:00Comments on Before The Morning: come sweet sundayPatricehttp://www.blogger.com/profile/06865294910862077812noreply@blogger.comBlogger70125tag:blogger.com,1999:blog-8191367444095035928.post-58703389573105191022009-04-13T12:50:00.000-04:002009-04-13T12:50:00.000-04:00hunny, welcome to motherhood. yes you have to be e...hunny, welcome to motherhood. yes you have to be extra careful with Jonah because of EB. yes, you have to be careful about who you trust with his care. BUT, you are first and foremost his mother. he will be looking to you for reassurance and support. check my other comments, i left you a website about a family who has three EB kids. it might help get a better view of what you are dealing with. and they have a list of other EB patients, both adult and children, so you can connect with other people who have been there. regular moms also worry over every little wheeze, bump, blister and bruise too. my husband and i are almost paranoid with every little head bump that our 20 month old gets. * we had a bad fall when he was only a month old that lead to a frctured skull. he's been healed by the grace of God, but that doesnt stop a mother from worrying.* you and matt are doing the best you can. its difficult being a parent in the first place. babies dont come with instructions, but blogging may help keep you from burning out. vent your frustrations out here and then accept the peace that God is willing to give you. believe me , it helps. lots of hugs, prayers, and love to you and yours<BR/>Tina<BR/> ps. heres my email addy if you want to talk. tribfrce4534@yahoo.comTribulationhttps://www.blogger.com/profile/03912085100941083091noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-27666982795812937902009-04-12T20:02:00.000-04:002009-04-12T20:02:00.000-04:00Sweet Patrice . . . don't know you, but feel as if...Sweet Patrice . . . don't know you, but feel as if I do. My heart aches so much for you as a mother. I cannot begin to imagine what you and Matt are REALLY going through. One thing for sure though, you can count on continued prayers . . . from many many many people. Hope you have a brighter day tomorrow in the name of Jesus our Savior.<BR/>Love, Tears and Prayers<BR/>Sandy in King, NCSandynoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-59217306810028623082009-04-12T19:21:00.000-04:002009-04-12T19:21:00.000-04:00Take a break! We're praying for you, that God wil...Take a break! We're praying for you, that God will sustain you and hold you up. <BR/><BR/>So glad the Easter Bunny was able to visit Jonah with some Easter treasures.nataliehttps://www.blogger.com/profile/10758393907259378213noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-54695841730679498182009-04-12T13:46:00.000-04:002009-04-12T13:46:00.000-04:00I just wanted to mention to you an amazing formula...I just wanted to mention to you an amazing formula for sensitive babies (relux etc). It is called "Neocate". Look it up on the internet and read about it. I am sure your pedi can possibly give you a sample of it too. Praying for your family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-78172123403934037722009-04-12T13:38:00.000-04:002009-04-12T13:38:00.000-04:00We will continue to pray and check back in. YOu t...We will continue to pray and check back in. YOu take whatever time you need to sort through the emotions. Ya know, even with a "healthy" baby, there are still so many worries and things that sometimes don't add up and I can only begin to imagine what your Mommy thoughts are like with a baby with this type of condition. I will pray for you specifically as you seek the Lord's comfort. He is near. Be still and KNOW that He is God. <BR/>much love dear sister in Christ,<BR/>Daisy (alabama)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-78083988995020823202009-04-12T13:35:00.000-04:002009-04-12T13:35:00.000-04:00Thank you for letting us know that you'll be takin...Thank you for letting us know that you'll be taking a break. I know I would worry if you didn't post for a few days.<BR/>Please know that I am just one more person begging God to give Jonah healing to his little body. And peace and strength to your family.<BR/>((hugs)) <BR/>and Happy Easter!Millicenthttps://www.blogger.com/profile/05335354515246862447noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-62354322172455439092009-04-12T13:25:00.000-04:002009-04-12T13:25:00.000-04:00(((Hugs))) We continue to pray for your family.(((Hugs))) We continue to pray for your family.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-25805095099227739112009-04-12T13:19:00.000-04:002009-04-12T13:19:00.000-04:00Prayers for mercy for your sweet baby. Thank you ...Prayers for mercy for your sweet baby. Thank you Jesus! CarolCarolhttps://www.blogger.com/profile/13059278959057152861noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-69103676207091943612009-04-12T13:18:00.000-04:002009-04-12T13:18:00.000-04:00Dr Cotton in Cinci is the best upper airway doc in...Dr Cotton in Cinci is the best upper airway doc in the country. His areodigestive team is awesome. You can trust them! They treat my baby as well. You are really doing an amazing job! ((Hugs))Hopehttps://www.blogger.com/profile/08185169858979564182noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-12288064539974670582009-04-12T13:10:00.000-04:002009-04-12T13:10:00.000-04:00Praying for peace for your family and good health ...Praying for peace for your family and good health for sweet Jonah! May God hold you tightly during this time so that you can rest!<BR/><BR/>Laurie S.<BR/>IowaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-62612504368681953472009-04-12T12:48:00.000-04:002009-04-12T12:48:00.000-04:00I read all the comments yesterday and thought that...I read all the comments yesterday and thought that it would all overwhelm you, I felt so badly, all had good intentions but it is so difficult trying to make the right decisions. I know when a situation comes up in my life and I listen to too many voices I feel like I am losing it and then I waiver back and forth between decisions and lose sleep etc. My prayer for you and your husband is that God's voice will break through and you will know what to do and will have peace in your hearts. So sorry you are weary so totally understandable.<BR/><BR/>Happy Ressurection DayErinhttps://www.blogger.com/profile/13169949411104658849noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-12043373837715609852009-04-12T12:45:00.000-04:002009-04-12T12:45:00.000-04:00Patrice, you have been so faithful keeping us info...Patrice, you have been so faithful keeping us informed on how things are going. Don't worry about us, we will continue to lift sweet Jonah, you and Matt in prayer. I am sure blogging has been a sense of comfort in some small way, but you have so much to do now since Jonah is home and I am sure it is overwhelming. Just concentrate on Jonah, yourself and Matt. Sometimes advice from others is helpful, but also alarming. I know you feel inadeqate about knowing all about EB, but just trust your instincts being a Mother. I am sure with time, you will be very educated in it. You have never really had time to recover from giving birth, you have had to keep going like the energizer bunny. Wish some of us could give you some of our strength. May God Bless and wishing you and your family a Happy Easter.Janehttps://www.blogger.com/profile/17842382907275292405noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-57564772444102638982009-04-12T12:02:00.000-04:002009-04-12T12:02:00.000-04:00I am praying for you and new mercies each morning....I am praying for you and new mercies each morning.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-62132263867040540172009-04-12T11:48:00.000-04:002009-04-12T11:48:00.000-04:00I will NOT stop praying for you. I can understand ...I will NOT stop praying for you. I can understand how you need a break! I read the comments and I needed a break! I know each person means well, but that doesn't make it any easier to understand what a Mama should do, listen to other mamas or listen to Drs. I know it is hard. Last night my daughter (5) was up ALL night with a tummy ache. I thought of you all night long. I told you I would be on night duty and I was. I thought of how scary it is when our kids are hurting and all we have is Christ. That is really ALL we have. Drs, moms, we really all mean well, but we don't know what is going on with Jonah, but He does. I felt helpless all night as my daughter cried with a tummy ache, I had no idea, what to do for her. The best thing I could do for her was pray, and that is what we did. Then, I prayed for you, and I prayed for Jonah. I just wanted you to know that I really am praying my big behind off for you and I won't stop. If you post 10 times today or if you don't post anymore at all. You will be covered. I do pray today will be an uplifting and encouraging day for you. It sounds like you have an amazing church family and I pray they wrap their arms around you today and help you feel the love of Jesus today like you have never felt it before! Blessings! MissyOur family pagehttps://www.blogger.com/profile/14645968031336481358noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-63127513143825543442009-04-12T11:32:00.000-04:002009-04-12T11:32:00.000-04:00I do not know what it is like to have a baby with ...I do not know what it is like to have a baby with EB but know what it is like to have babies with serious health problems and I know this much for myself and hope this helps even just a "little" and gives you comfort...<BR/>Fear is not of GOD!<BR/>and as wonderful as the world wide web is...it can have it's down sides...<BR/>the people who are telling you not to trust the doctors...do they have a child with EB?<BR/>DO they know what they are talking about?<BR/>Cause I sure don't and could never advise you or direct you in any kind of directions other then straight to our Heavenly Father...<BR/>He gave you instinct for something and only you know your little one best!<BR/>Without being overly fearful (fear is not of god thing)...trust yourself!!...<BR/>Your Jonah`s momma...the one who knows all his little sounds and whimpers...<BR/>I hope I do not sound critical of others here...because that is not my intent...but from my experience with sick babies is that there were times where I got ``worried`` not from my fears, but other peoples fears...and then there are times where I dismiss my own concerns over the advise of others...<BR/><BR/>My point is...trust yourself and God...if you feel your little boys needs something more then what is being offered...trust that and go and find it...<BR/>We are praying for your beautiful family and pray that you get the peace in your heart that you know your doing the right things for Jonah...<BR/>Take a break...do what you need to do....but remember there are lots of us out there praying for you always!<BR/><BR/>God Bless you<BR/><BR/>Nadine in CanadaNadinehttps://www.blogger.com/profile/17247631267803247410noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-57506126889151559932009-04-12T11:30:00.000-04:002009-04-12T11:30:00.000-04:00Have you ever spoken with Mckmama or do you read h...Have you ever spoken with Mckmama or do you read her blog? You are going through such similar things as far as having very sick babies that no one is too sure how to deal with. You need to trust your instinct- that is God speaking to you. You are your baby's BEST advocate and you are a STRONG christian- God IS with you. I hope that you will contact Jennifer(Mckmama)- you need someone who can truly relate to you. Just in case you don't know her blog- she's at www.mycharmingkids.net Please contact her!! I'm always praying for you here in Kansas!!Jennyhttps://www.blogger.com/profile/12653227968488071702noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-10820489385265747782009-04-12T10:54:00.000-04:002009-04-12T10:54:00.000-04:00Patrice, Your primary concern is your son not your...Patrice, Your primary concern is your son not your bog readers. So while we want to know what's going on with Jonah, more than anything we want your family to be healthy and rested. If you need to take a rest from blogging in order to see to him by all means do it. We will keep you in our prayers. God is good.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-80962464464525841492009-04-12T10:52:00.000-04:002009-04-12T10:52:00.000-04:00Although my daughters EB is not as severe as Jonah...Although my daughters EB is not as severe as Jonah's, I understand the feelings you are having. I too analyze every cough or gag and wonder if something is going on. I think it is probably wise to have your ENT consult with the best of the best. I have heard great things about the EB clinic in Cinncinati. You have to trust yourself and know that you are making the BEST decisions possible for your sweet little man. Each and every EB case is different, so YOU will be the one that knows whats best for him and you should do whatever you need to put your mind at ease. I will continue to pray....Tracyhttps://www.blogger.com/profile/11582439260313847391noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-12592900576542857902009-04-12T10:45:00.000-04:002009-04-12T10:45:00.000-04:00Have been reading for a while now, but this is my ...Have been reading for a while now, but this is my first comment. Just wanted to let you know that I am praying for you and your family. And if you're ever feeling overwhelmed and need someone to talk to, a Christian psychologist (i.e. ME!) is hear to listen. Sometimes it just helps to vent! Sending you love!<BR/><BR/>Dr. DaniDMRhttps://www.blogger.com/profile/02000501676146055671noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-56237818807011215172009-04-12T10:40:00.000-04:002009-04-12T10:40:00.000-04:00I wish I could hug you. I have felt very similiar ...I wish I could hug you. I have felt very similiar feelings as you. You can do this, not because you are stronger than parents of "healthy" kids, bot because you are better than other parents, or stronger. You can do this because Jonah needs you too, and so you will for him. Some days you might kick and scream while you do it, and thats ok. You will still do it kicking and screaming, other days will fill you with such happiness, you wouldnt want it any other way.<BR/>Much love, Jessica and AlexAnxious AFhttps://www.blogger.com/profile/10911308224630696808noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-4741540194969553772009-04-12T10:28:00.000-04:002009-04-12T10:28:00.000-04:00As a mother to a medically fragile baby myself, I ...As a mother to a medically fragile baby myself, I can tell you GOD DOES GIVE YOU MORE THAN YOU CAN HANDLE so that you learn to lean more into Him. This is such a hard lesson for anyone but I think especially for moms. Although you must watchdog your baby ultimately his life is not in our hands. Thank goodness! I can tell you from personal experience that I learn more truth about my child from other moms than the doctors. At the center of the storm you must trust your instincts and trust Him. Take a break seriously. I know it's hard to do but you must try. It will bring you back to focus. Praying as always.Crystal in ILnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-1005139392084353362009-04-12T10:15:00.000-04:002009-04-12T10:15:00.000-04:00Happy Easter, I hope that you get some much neede...Happy Easter, I hope that you get some much needed rest and cry some much needed to cry tears. I will be sure to include Jonah in my prayers. All I can offer is a kind word to hold and trust in God things will get better. <BR/><BR/>Blessings to you, Matt and Jonah in this glorious day for your little miracleThe Mind of a Momhttps://www.blogger.com/profile/04934230977120476638noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-38096939608711007052009-04-12T10:11:00.000-04:002009-04-12T10:11:00.000-04:00Still praying, even if you're taking a break. Its ...Still praying, even if you're taking a break. Its all I can do; the least I can do... Happy First Easter Jonah!!!Samanthahttps://www.blogger.com/profile/15345399624236982086noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-60036682184864735102009-04-12T10:06:00.000-04:002009-04-12T10:06:00.000-04:00Patrice, Matt, and Jonah...you guys are all three ...Patrice, Matt, and Jonah...you guys are all three in my prayers constantly. I pray that God will grant you peace, strength, and knowledge, and that He will give you enough moments of joy mixed in to help you get through all of the things that you are going through now and whatever you will go through in the future. Trust your instincts, you know your son better than anyone except God Himself. Look for the little joys that will boost you...a smile from Jonah, a new flower blooming in the yard, a particularly beautiful sunrise or sunset. Each of those things was created by God, and I can't help but think He sends them to boost our spirits. Take a few days to rest, to recharge. We will all still be here, and we'll all still be praying. If you need specific prayers, or anything else, have someone go on the blog and let us know so we can taylor our prayers to your needs. And when you are ready, come back and let us know how things are going. There's the saying, "God only gives us what we can handle"...I used to amend that with "And sometimes I think He over-estimates me"...but now that time has passed, I realize it's more like "Now I know I under-estimated myself". He knows what we can handle, even when we'd argue with Him that we can't handle another thing...it's only in hind-sight that we see He was right and we got through it afterall. I pray that your hind-sight will be the same...that you'll come through this stronger than you ever thought you were, and that you'll read and remember the story of the "Footprints"...it's always proved inspirational for me...<BR/><BR/>One night a man had a dream. He dreamed he was walking along the beach with the LORD.<BR/><BR/>Across the sky flashed scenes from his life. For each scene he noticed two sets of footprints in the sand: one belonging to him, and the other to the LORD.<BR/><BR/>When the last scene of his life flashed before him, he looked back at the footprints in the sand.<BR/><BR/>He noticed that many times along the path of his life there was only one set of footprints.<BR/><BR/>He also noticed that it happened at the very lowest and saddest times in his life.<BR/><BR/>This really bothered him and he<BR/>questioned the LORD about it:<BR/>"LORD, you said that once I decided to follow you, you'd walk with me all the way. But I have noticed that during the most troublesome times in my life, there is only one set of footprints. I don't understand why when I needed you most you would leave me."<BR/><BR/>The LORD replied:<BR/>"My son, my precious child, I love you and I would never leave you.<BR/>During your times of trial and suffering, when you see only one set of footprints, it was then that I carried you."Melissahttps://www.blogger.com/profile/11205464757656744108noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-9360743445033863312009-04-12T09:45:00.000-04:002009-04-12T09:45:00.000-04:00patrice, take all the time that you need. know tha...patrice, take all the time that you need. know that we will continue praying for jonah and you guys and that he will not leave our thoughts and prayers. <BR/>love you, chica.Laurenhttps://www.blogger.com/profile/06326031737688016062noreply@blogger.com