tag:blogger.com,1999:blog-8191367444095035928.post7626026557490653916..comments2023-10-07T07:56:14.379-04:00Comments on Before The Morning: jonah - tuesday, march 31stPatricehttp://www.blogger.com/profile/06865294910862077812noreply@blogger.comBlogger68125tag:blogger.com,1999:blog-8191367444095035928.post-24927610478278944082009-04-01T20:17:00.000-04:002009-04-01T20:17:00.000-04:00I am not sure my last comment took--so, we're comm...I am not sure my last comment took--so, we're commenting again! Yay for you all. Patrice, what a great job you're doing! What a beautiful son and beautiful family. I'm praying for sunshine too, to make you feel refreshed, sing with the birds and light up your day with warmth and comfort. Bless you and Jonah and Matt! Always praying for you, Robin from TR and the gang!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-77329406468813285572009-04-01T17:20:00.000-04:002009-04-01T17:20:00.000-04:00Congratulations on bringing Jonah home. We pray th...Congratulations on bringing Jonah home. We pray that the Lord will give you the strength and knowledge to keep going for little Jonah. He needs you now than before. We are praying for the BEST. Be strong Jonah...Matt and Patrice-our hearts go out to you both.<BR/><BR/>Robin and Paul CummingsRobin and Paul Cummingsnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-35440566494667025402009-04-01T16:11:00.000-04:002009-04-01T16:11:00.000-04:00I stumpled across your blog the other day and your...I stumpled across your blog the other day and your family has not left my mind or heart since! I will continue to pray and keep checking in with you lovely little man! Thank you for taking the time to share your story!<BR/><BR/>Alisa (and 4 little ladies)<BR/>Kansas~Alisahttps://www.blogger.com/profile/05865057696027142434noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-16758695940641148232009-04-01T14:32:00.000-04:002009-04-01T14:32:00.000-04:00I am so glad Jonah is home and improving! The t...I am so glad Jonah is home and improving! The transition to "home" is always exciting (read stressful!) when you bring home a new baby. A lot of his fussiness may just be due to the newness of his surroundings (sights, sounds, smells, etc.). I will continue to pray for little Jonah, you and Matt. <BR/><BR/>You are all loved by many, many people!<BR/><BR/>Janet Caraker (formerly known as Janet Horton)Janet Carakerhttp://www.islandjacks.comnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-85446729638496751722009-04-01T13:38:00.000-04:002009-04-01T13:38:00.000-04:00praise you Jesus~look at this sweet sweet lil boy~...praise you Jesus~look at this sweet sweet lil boy~HOME~~wow exciting is this! the pics are great. i pray that the ENT appointment goes great and get answers to your questions. your son is just beautiful. i am so happy for you to be at home. you will soon find your own routine and let me tell ya, mom, it will get better! keep up the great work! your awesome...god bless you williams family.mrsrublyhttps://www.blogger.com/profile/15852815577502472706noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-27532184675083874792009-04-01T13:06:00.000-04:002009-04-01T13:06:00.000-04:00My daughter is 4 months old and also has reflux......My daughter is 4 months old and also has reflux...she was acting as though she couldn't catch her breath and was gasping for air. That is actually how they diagnosed with reflux. I hope this helps. So glad youare home! Praying for Jonah and the family :)Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-65803551886018506522009-04-01T11:02:00.000-04:002009-04-01T11:02:00.000-04:00I'm just a lurker (that prays for your son every n...I'm just a lurker (that prays for your son every night!) that is de-lurking to say that all tiny babies are VERY noisy sleepers... it's the weirdest thing.. sounds like an old grandpa sleeping! hehe... and our pediatrician says that it's normal for a baby to take 2-3 second pauses like he's stopped breathing, and doesn't become a concern until it's about 10-15 seconds at a time. You're such a great mommy for worrying over every little detail, but it sounds like, all things considered, Jonah is doing FANTASTICALLY!Amy, queen of the world.https://www.blogger.com/profile/13381286232352589597noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-62498624315620119462009-04-01T10:00:00.000-04:002009-04-01T10:00:00.000-04:00All of it sounds so overwhelming, but you seem to ...All of it sounds so overwhelming, but you seem to be doing so well. I am hoping that his little esophagus and trachea are ok. The breathing thing might be related to EB, but most newborns also have irregular breathing patterns as their lungs continue to mature. My son slept on my chest in the recliner for many a night after his birth, and I would panic when he'd gasp or pause for a long time between breaths. Our doctor reassured us that this is completely normal, so we'll hope that this is all that Jonah's dealing with!Jenhttps://www.blogger.com/profile/03720426938011606536noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-17955086071912661462009-04-01T08:46:00.000-04:002009-04-01T08:46:00.000-04:00I haven't commented yet, but I read every day. My ...I haven't commented yet, but I read every day. My family and I have been praying for my cousins baby (4 yo with autism) and for my lil guy (6 yo with diabetes, epilepsy and celiac *maybe*) we pray only for a complete healing for our boys if it is Gods will. I will add Jonah to the list. You're going wonderfully, I know how tedious this is, and I know how worth it is. But remember to take care of yourself too!Anonymoushttps://www.blogger.com/profile/03091362651489461567noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-80691605613294959692009-04-01T07:45:00.000-04:002009-04-01T07:45:00.000-04:00praying praying for you! Keep up the good work!praying praying for you! Keep up the good work!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-72897565219499369522009-04-01T06:27:00.000-04:002009-04-01T06:27:00.000-04:00Poor guy...I know how bad a simple sore throat hur...Poor guy...I know how bad a simple sore throat hurts...I can't even imagine what it would feel like to have a blister in your throat. I hope and pray that all the things he needs healed will be taken care of. As for the respiratory issues, you are mom, you are with him all the time, you know your child. If it gets to a point where you are really concerned, MAKE someone listen. <BR/><BR/>I hope you're not tired of hearing stories about when Bryson was a baby, but I tell them in case any part of our story helps, even a little. When Bry was born, after we brought him home from the hsptl, I noticed that breath-holding, too. I was worried and often stayed up all night to watch him breathe. I told the pediatrician's office, and they told me it was my imagination, that I was "a young, first-time, mom and I was stressing needlessly". Well....when he had his first surgery (3 weeks old), the nurses in the PICU noticed the same thing. He was diagnosed with Apnea, which is a sleep disorder where the person stops breathing in their sleep. (Snoring is also supposedly a symptom...though I've seen lots of people who snore and do NOT have Apnea.) For most people, they will self-start breathing again a few seconds later, for some it can be very dangerous. Since there really wasn't any way to tell (back then, don't know about now), they put him on a monitor at night that would emit a shrill alarm if he stopped breathing for more than a certain amount of time. They also did sleep studies...one of which documented a counted 60 episodes a night. Bryson outgrew this when he was about 3 1/2 years old, and while the alarms did go off all the time, he always self-started, too. (Thank you God!)<BR/><BR/>Anyway, I guess the moral of this rather long story is that there is a condition that causes them to hold their breath when they sleep, and if it's happening a lot or for longer than a few seconds and you become concerned about it, make someone listen to you...if one doctor won't, then find someone else who is familiar with Jonah who will. You are mom, and you know your child way better than the doctors...they may know his medical condition, but you know HIM.<BR/><BR/>Stay strong, hang in there, and know that you guys are loved and prayed for....Melissahttps://www.blogger.com/profile/11205464757656744108noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-50241848149060041592009-04-01T01:13:00.000-04:002009-04-01T01:13:00.000-04:00oh, so glad you are home finally!!will continue to...oh, so glad you are home finally!!<BR/>will continue to pray for you allAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-25542532907920353832009-04-01T00:04:00.000-04:002009-04-01T00:04:00.000-04:00I don't want to scare you but I do not think the h...I don't want to scare you but I do not think the high pitched sounds are good. You should call your doctor and ask about this. I understand that you do not want to take him back to the hospital but he may need to go there.<BR/>I sincerely hope everything is OK and I do pray everyday for you and Jonah.<BR/>ErmaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-24256250890737564422009-03-31T23:48:00.000-04:002009-03-31T23:48:00.000-04:00Praying!Praying!Alishahttps://www.blogger.com/profile/00774816386867888752noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-65433760812296408442009-03-31T23:42:00.000-04:002009-03-31T23:42:00.000-04:00We'll be praying!SW WI MOMMYWe'll be praying!<BR/><BR/>SW WI MOMMYLauranoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-40699862882726078882009-03-31T23:39:00.000-04:002009-03-31T23:39:00.000-04:00Hi Patrice- I don't personally know you, but have ...Hi Patrice- I don't personally know you, but have been following your blog (a friend of mine has a link on her blog), and wanted to let you know I'm praying for you, Matt and Jonah. Jonah is a precious boy, and while it breaks my heart to see him suffer, it's so evident that God is already working in his little body, and also giving you the strength and peace to take care of him. I wish there was something more I could do to help, but since I'm in TX, I'll just continue to pray!<BR/><BR/>I'm so sorry about the blisters in his throat, and will pray that those resolve quickly and that the dressing changes will be as painless as possible.<BR/><BR/>Please know that you are loved and being prayed for - all over the country!<BR/><BR/>Laura A (McKinney, TX)Laura Ahttps://www.blogger.com/profile/06701139472899714172noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-22491311139216519752009-03-31T23:25:00.000-04:002009-03-31T23:25:00.000-04:00Praying for Jonah tonight as I do every day!!!!Praying for Jonah tonight as I do every day!!!!Stephaniehttps://www.blogger.com/profile/16873029956740258055noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-52191407414775838092009-03-31T22:58:00.000-04:002009-03-31T22:58:00.000-04:00I hope the dressing changes went well tonight...I ...I hope the dressing changes went well tonight...I was thinking about you guys extra hard around 8! Be strong little Jonah <3dawn - ontario canadanoreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-11196997463919676982009-03-31T22:52:00.000-04:002009-03-31T22:52:00.000-04:00I can only imagine the pain in his little throat. ...I can only imagine the pain in his little throat. I am praying it heals soon and he gets relief. I continue to pray and think of you daily. So glad you are home!Sharihttps://www.blogger.com/profile/04554314908015066118noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-48095325217690473852009-03-31T22:44:00.000-04:002009-03-31T22:44:00.000-04:00Our family is so glad to see Jonah is home! Both ...Our family is so glad to see Jonah is home! <BR/><BR/>Both of my boys had severe reflux and they were prescribed a liquid form of Zantac. My Doctor advised me to have it filled at a local Pharamacy that compounds their own prescriptions so that it had no flavor. I guess Zantac has a peppermint flavor added to it. The compounded version was tasteless and it seemed to be easier for them to take. My nephew took the flavored Zantac and had a really hard time with it. He hated taking it and my sis said she thought it made him fussier. (He was a preemie with a lot of medical complications.) I'm not sure if it would help Jonah, but it might be worth a try. <BR/><BR/>Also, we found that sleeping upright in a swing or the bouncer helped their reflux immensely. If they laid down flat in their cribs for naps or at night, they were in horrible pain. Any type of elevation is good for reflux. Pacifiers are great for it as well.<BR/><BR/>Take it easy. Being home alone all day with a new baby is tough work. Focus on one day at a time and give yourself breaks. Don't be afraid to take a walk or go get coffee when your husband comes home from work. Don't forget to take care of yourself during this time! <BR/><BR/>Wishing you the best-Keelyhttps://www.blogger.com/profile/09478576609453104958noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-49846798003870266122009-03-31T22:34:00.000-04:002009-03-31T22:34:00.000-04:00My son had reflux when he was an infant. My savio...My son had reflux when he was an infant. My savior was a vibrating bouncer seat! He slept in that seat everynight because it kept him just upright enough to not do the choking gurgling noises he did when laying flat. I hope he gets some relief soon!Anonymoushttps://www.blogger.com/profile/09096929098493596507noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-12263666757180212722009-03-31T22:25:00.000-04:002009-03-31T22:25:00.000-04:00So happy that you guys are settling in at home. I...So happy that you guys are settling in at home. I'm sure that is so much more comfortable for you and gives you some normalcy, especially after all you've been through thus far. Jonah sure has captured our hearts and our little family in San Diego continues to pray for yours.<BR/><BR/>Blessings in abundance,<BR/><BR/>AlisonAlisonhttps://www.blogger.com/profile/01602988376827008259noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-88117921620331405672009-03-31T22:24:00.000-04:002009-03-31T22:24:00.000-04:00There's no place like home! We all will continue t...There's no place like home! We all will continue to pray for you and your sweet boy, Jonah!<BR/><BR/>Many Blessings,<BR/><BR/>AmandaWatts Familyhttps://www.blogger.com/profile/07656275442592867289noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-63089936977201318352009-03-31T22:07:00.000-04:002009-03-31T22:07:00.000-04:00I just want to add, mainly for others reading this...I just want to add, mainly for others reading this who don't know much about EB, but blistering in the throat is completely different from blistering in the airway.<BR/> <BR/>Blistering in the throat can cause swallowing issues and long term blistering can cause the throat to scar shut; while blistering in the airway can cause the trachea to scar/swell shut sending that person into respiratory arrest. The only way to save them is to have a tracheotomy performed, which is a tube in the neck that allows the person to breathe. Usually the scaring/swelling occurs over time and one blister usually doesn't cause someone to stop breathing, but everyone with EB is different.Sara Denslawhttps://www.blogger.com/profile/09625588629095084632noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-50544399738437777002009-03-31T22:05:00.000-04:002009-03-31T22:05:00.000-04:00I will continue to pray for sweet Jonah. He is so...I will continue to pray for sweet Jonah. He is so precious!<BR/>In Him,<BR/>KimKim (marygracesummons.blogspot.com)https://www.blogger.com/profile/14368553087650841135noreply@blogger.com