tag:blogger.com,1999:blog-8191367444095035928.post6728713525986725895..comments2023-10-07T07:56:14.379-04:00Comments on Before The Morning: NO strictures!Patricehttp://www.blogger.com/profile/06865294910862077812noreply@blogger.comBlogger78125tag:blogger.com,1999:blog-8191367444095035928.post-13428900745507422502010-01-11T16:56:35.190-05:002010-01-11T16:56:35.190-05:00Replying late on this post, so I'm not sure yo...Replying late on this post, so I'm not sure you'll see it, but I wanted you to know that you have the most incredible way with words Patrice! I start to feel guilty when I read your posts because I end up laughing. You make everything - good and bad - so real. Jonah is such a lucky boy to have you guys as his parents. And you guys are very lucky to have Jonah as your sweet precious little boy. He is just adorable and very handsome too! <br />We pray for your family every day.<br />(((hugs)))<br />ingridUnknownhttps://www.blogger.com/profile/09712480392656457348noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-23139129492812725342010-01-09T08:15:08.870-05:002010-01-09T08:15:08.870-05:00If there has ever been a parent who hasn't had...If there has ever been a parent who hasn't had those moments of stress when they get frustrated with a dr. or other medical personnel when their child is sick or hurt I'd be surprised. You have to worry about every detail of a simple x-ray because of Jonah's condition. I don't think anyone should look down on you for feeling frustrated.Stacihttps://www.blogger.com/profile/11867438427819234063noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-34341342624201992882010-01-08T22:44:06.821-05:002010-01-08T22:44:06.821-05:00You have a definite way with words, Patrice. You j...You have a definite way with words, Patrice. You just keep me laughing!<br /><br />Jonah is so blessed to have such an awesome mother to take care of him. You are a strong and very amazing mama.<br /><br />Praying for Jonah!Beth Herringhttps://www.blogger.com/profile/12360855305173494492noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-59134021926054832602010-01-08T19:48:56.432-05:002010-01-08T19:48:56.432-05:00I understand the nurse and doctor thing completely...I understand the nurse and doctor thing completely. My husband is paraplegic and we go to an orthopedic surgeon and he wants to know if he can stand and walk at all!! No, he is paralyzed and we have not had a miracle yet!! It has only been 24 years, I don't think it's happening. I have read your blog thru my sister's blog for a long time and have been praying for Joshua and for you and your husband. Being a caregiver is a hard job and "if you don't live it, you don't know it!" I will continue to keep you all in my prayers!!Cathyhttps://www.blogger.com/profile/05497188616205025389noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-42922885175301609842010-01-08T01:42:58.069-05:002010-01-08T01:42:58.069-05:00Great post, and great news! Sweet little Jonah-big...Great post, and great news! Sweet little Jonah-big hugs to you!Brandiehttps://www.blogger.com/profile/09220736049164217548noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-77675748915137580152010-01-07T23:12:31.857-05:002010-01-07T23:12:31.857-05:00What wonderful news! Praise God! Congratulations t...What wonderful news! Praise God! Congratulations to all of you for making it through such a trying procedure. <br /><br />I can totally relate. My daughter (3yrs) had a VCUG (in probably the same room as Jonah). The nurse and tech were equally as terse and rude (only male, so unfortunately there's more than one of them). She had to have a dye study of her urinary tract and the specialist wanted to sedate her to minimize trauma. Unfortunately she also had sedated radiation that day (in addition to chemo) and could only be sedated once, so it had to be done fully awake. They were rude and unaccomodating. As she lay there screaming strapped to that 4in wide board with that machine inches from her face, legs tied open with a catheter- I lost it. <br /><br />Then they tell you to have them relax so they can pee on the table for the scan, but you can't touch them! It was horrible. Prayer is the only thing that gets us all through it! (Very thankful hers was good news too.)<br /><br />We are called and chosen by God to be our child's parent. We must be their advocate, caregiver, comforter, and at times medical specialist. You have learned to do it well, with grace, and to think fast on your feet. Don't EVER feel like you have to apologize. Doctors and nurses have a lot on their plate at any one time and we have insight into our children that no one else will ever have. <br /><br />Trust your gut, love that boy, and lean on God :) Praying for endurance and strength for all of you!Amberhttps://www.blogger.com/profile/13369258026306455670noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-70255490699626781062010-01-07T22:43:34.030-05:002010-01-07T22:43:34.030-05:00You are totally a good Christian. Jesus got mad p...You are totally a good Christian. Jesus got mad plenty o times! You are also a super awesome madre! Prayers. God's continued blessings.the-mommy-personhttps://www.blogger.com/profile/04428463661481282846noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-47697846554449135662010-01-07T22:33:06.196-05:002010-01-07T22:33:06.196-05:00Au contraire, Patrice!
YOU ARE A VERY GOOD CHRISTI...Au contraire, Patrice!<br />YOU ARE A VERY GOOD CHRISTIAN!<br /><br />I think your "thoughts in italics" are hilarious. You are such a comedian! I think that's part of what helps you deal with Jonah's EB. At least "I" find humour the best therapy for my own stressful situations. <br /><br />Glad the outcome of the x-ray was good news. <br /><br />And Jonah? No more PUKE ALERTS, ok buddy? And give Momma & Daddy some time to sleep.... trust me... a restful Momma is a happy Momma! haha<br /><br />~Michelle Found<br />Picton, Ontario, Canada<br />www.fiddlersfound.blogspot.comMichelle Foundhttps://www.blogger.com/profile/04149958452683536980noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-39524845753262421552010-01-07T22:13:37.523-05:002010-01-07T22:13:37.523-05:00Great news. I am so glad to hear this. Thank God...Great news. I am so glad to hear this. Thank God.<br /><br />I hope you and Matt are able to get some rest and sleep.<br /><br />--MariCareGiving Daughterhttps://www.blogger.com/profile/03326854215102017169noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-87686944235267369472010-01-07T20:58:52.658-05:002010-01-07T20:58:52.658-05:00I read your blog every day and I am amazed at you ...I read your blog every day and I am amazed at you endurance and patience.If people are critical it is because they don't have a clue, but our Lord gets it, and I praise Him with you over these test results. <br />KarenKarenhttps://www.blogger.com/profile/02928169763734525139noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-52598094430191303662010-01-07T20:45:21.449-05:002010-01-07T20:45:21.449-05:00so great to hear the news! what a brave boy he is ...so great to hear the news! what a brave boy he is to go through all that (and a brave mom too!).Jessicahttps://www.blogger.com/profile/00516262372833728047noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-14646863614985545692010-01-07T20:40:26.996-05:002010-01-07T20:40:26.996-05:00That's great news! Was thinking about you guy...That's great news! Was thinking about you guys all night. Did they say if they saw the reflux during the test?LisaLhttps://www.blogger.com/profile/05271092686861372345noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-7171240552731943982010-01-07T20:27:10.050-05:002010-01-07T20:27:10.050-05:00God bless you and your precious baby! I'm glad...God bless you and your precious baby! I'm glad you got a new report. I totally understand your thoughts where the Dr. and Nurse were concerned, I never will forget the time while my guy was hospitalized, I stepped off the elevator to my baby's shrieks to find two nurses holding him down and my mom in tears begging them to stop, they didn't even realize they were working with a former 24 weeker preemie with major issues, they hadn't read his charts, they didn't care.....<br /> He was covered in bruises! I have a new 2 stick policy now, 2 tries then you get someone better!Denisehttps://www.blogger.com/profile/00075033775780048055noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-50085817753979298562010-01-07T20:22:54.070-05:002010-01-07T20:22:54.070-05:00I have been reading your blog for a long time but ...I have been reading your blog for a long time but have never commented. You are an amazing mother! Don't ever let anyone tell you different. You put baby Jonah first and speak up for him when he can't. We pray for Jonah daily in our house and I am glad to hear today's appointment went well.April S.https://www.blogger.com/profile/09908356962192364100noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-28489128901762990202010-01-07T20:16:26.655-05:002010-01-07T20:16:26.655-05:00Oh my goodness, what an ordeal! So very glad that...Oh my goodness, what an ordeal! So very glad that the results turned out well.Lelan @ Good Gravy!https://www.blogger.com/profile/01955418365598681973noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-32571175866595170692010-01-07T19:54:22.766-05:002010-01-07T19:54:22.766-05:00Awesome news about the strictures! I totally loved...Awesome news about the strictures! I totally loved your commentary in the story. Made my day! I know it may not have been funny to you, but still, you made my day.<br />~ElyseElysehttps://www.blogger.com/profile/04100019358485843850noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-78414762335871017082010-01-07T19:44:10.317-05:002010-01-07T19:44:10.317-05:00Wow, you went through alot! Seriously, I don'...Wow, you went through alot! Seriously, I don't know if I would have been able to remain as calm as you with that nurse and doctor, I think I would probably have lost it. I am so glad though that results were good. Praying that you get some much needed rest tonight and wake up feeling refreshed. You are so strong!Erinhttps://www.blogger.com/profile/13169949411104658849noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-66361644632900007242010-01-07T19:39:28.852-05:002010-01-07T19:39:28.852-05:00It seems to me that you are an awesome Christian a...It seems to me that you are an awesome Christian and you are using a tremendous amount of God given strength to take care of your precious baby son. God Bless!Cristihttps://www.blogger.com/profile/01861661815295204620noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-27619144572416732242010-01-07T18:31:39.035-05:002010-01-07T18:31:39.035-05:00Phew! Congratulations on making it through and the...Phew! Congratulations on making it through and the great news! We notice similar (though not as problematic) issues going to my OB practice--everyone has to re-collect the same information every time they come in! Yikes!Libbyhttps://www.blogger.com/profile/01083171991057163068noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-91506947048810324852010-01-07T17:18:43.125-05:002010-01-07T17:18:43.125-05:00you rock! your family blog button is on our blog! ...you rock! your family blog button is on our blog! keep the faith :)Reneehttps://www.blogger.com/profile/17644851164553684184noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-13034542427713816232010-01-07T16:13:38.140-05:002010-01-07T16:13:38.140-05:00Glad to hear about the test,good news. Sorry about...Glad to hear about the test,good news. Sorry about all the issues though with the doc and nurse. I am sorry someone should have informed them of Jonah coming and what they would be facing. I am a nurse and I know that I would want to be prepared and feel like I had done the best for my patient. You were a great advocate for your baby. I am sorry that you had to go through all this. I know that both of you were stressed about what they would do to Jonah. Get some rest all of you and enjoy the good news.Debbie,mother of twohttps://www.blogger.com/profile/10298741861779331155noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-49773768958711628712010-01-07T16:02:46.795-05:002010-01-07T16:02:46.795-05:00Hi Patrice,
I think that the Lord has given you a...Hi Patrice,<br /><br />I think that the Lord has given you an awesome gift of expressing even the most difficult experiences with humor! I mean seriously...you give a whole new meaning to "LOL"!!! :o)<br /><br />I'm a Speech Therapist, and observed some Modified Barium Swallow studies with some patients (children) in Grad School. "Have some chalk" is a good description!<br />You'd think they would be able to come up with something a bit less NASTY for patients to swallow, especially for babies and children. <br /><br />SOOO glad that all looks good and that there are no strictures!! Even happier that Jonah drank a lot of NON-NASTY liquid after the testing to hopefully erase the "chalk" taste from his memory!!<br /><br />You're a great Mom, and I believe that God is doing a great work in you and through you!Stephens Family Newshttps://www.blogger.com/profile/05808310708692947903noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-82875585610218983332010-01-07T14:36:11.933-05:002010-01-07T14:36:11.933-05:00I'm so happy for the great results! I think y...I'm so happy for the great results! I think you, Matt & Jonah did great under the circumstances. Thanks for you honesty.Speechlesshttps://www.blogger.com/profile/11074976981681457375noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-68180365370169236852010-01-07T13:26:11.549-05:002010-01-07T13:26:11.549-05:00We had to have this same test done on our Jonah wh...We had to have this same test done on our Jonah when he was 3.5 weeks old. Apparently, not much chart reading was going on, as they didn't have a bottle. Since I'd brought my boy to the dr with little more than a spare diaper and a bottle of pedialyte, then been admitted to the hospital... Well, you know better than I do the frustration. <br />It's an awful test - the contraption they strap them into is awkward at the very least. I'm glad that in the end you got GOOD NEWS!RLRhttps://www.blogger.com/profile/07186598026843397100noreply@blogger.comtag:blogger.com,1999:blog-8191367444095035928.post-65691160236725857672010-01-07T13:18:45.847-05:002010-01-07T13:18:45.847-05:00Just had to tell you your post had me really laugh...Just had to tell you your post had me really laughing today - I love humor - and even if it was not funny then - life with EB really needs humor. I love it when we go into weigh AJ and they ask us to remove bandages - they are so stuck in their routine - they just don't think. I tell them fine but they will need to have a room and a nurse available for the next 1 1/2 hours to help get him bandaged again. That usually takes care of it. I have found that pictures work great - before our derm appointment - I take pictures the day before (when we are doing bandage changes), I print them at home and then the dr can SEE his skin - if they have any questions about an area - we can just unwrap that area. <br /><br />Have a great day.<br /><br />Barbara and AJ (24 months RDEB)Barbarahttps://www.blogger.com/profile/02595321096076587681noreply@blogger.com