tag:blogger.com,1999:blog-5348155237652648174.post4827781131921261624..comments2023-10-02T03:16:48.356-05:00Comments on "EB"ing a Mommy: Elmo had four ducks... quack, quack, quack, quack!Courtney Rothhttp://www.blogger.com/profile/01781571778358173399noreply@blogger.comBlogger39125tag:blogger.com,1999:blog-5348155237652648174.post-72054026945080676702011-07-22T23:57:29.478-05:002011-07-22T23:57:29.478-05:00Hi Courtney, I just want to let you know how much ...Hi Courtney, I just want to let you know how much I love to see Tripp's smile...warms my heart. God has you all wrapped around his arms...continue to follow His lead; He wants you all to hold each other close. God's love, your love and your family's love will help your sweet boy through whatever pain he is feeling. Tripp is staying strong for you because you stay strong for him. Sending much love & many prayers. ~Reb~Anonymoushttps://www.blogger.com/profile/06900812487138346724noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-19077982913039166292011-07-15T21:04:23.380-05:002011-07-15T21:04:23.380-05:00Courtney,Courtney,maddys nonnahttps://www.blogger.com/profile/01445184803504627400noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-54766378591084684362011-07-15T15:37:40.025-05:002011-07-15T15:37:40.025-05:00I dont have a blog, but I check up on you every no...I dont have a blog, but I check up on you every now and then, I couldnt help to mention, but I sooooo see an angel on that open wound. I dont know if its already been mentioned above... The angel's are waiting..Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-45073650106960840192011-07-14T17:01:21.521-05:002011-07-14T17:01:21.521-05:00Hi Courtney-
I am a long-time follower...too long...Hi Courtney-<br /><br />I am a long-time follower...too long to have not left an encouraging comment by now. I enjoy reading your blog and love the videos of Tripp the most! Thank you for the update!<br /><br />I RARELY have true moments where I FEEL God and know that he's talking to me or with me. It's probably my "second child, scatter-brained" nature, but also makes those times moe special when it happens. I couldn't sleep last night and while I was lying there, you and Tripp crossed my mind and wouldn't leave. I just hurt for you Courtney, I don't know how else to describe it. I know very little about what all is exactly going on in your life. Everything I know is through what you post. My heart just ached for you, for Tripp, your everyday battles, your personal life stress, and how all of that added up must make you want to scream. Plus, just how lonely you must feel somedays. I know your mama is there and a bigger help then I even know, but even surrounded by all of that...loneliness can still rear it's ugly head. I just want you to know that you guys cross my mind frequently, I pray for you frequently and that I admire you for everything that you are and are doing. For some reason the song Be Small Enough by Nichole Nordeman (sp?) came to my mind as I was thinking of you and just wanted to share that with you. Maybe you already know it, if not check it out if you have time. I just felt like I needed to share. Take care & thanks for sharing everything that you do on here!Rachaelhttps://www.blogger.com/profile/04210210200474117366noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-15624207909549084352011-07-13T15:37:33.059-05:002011-07-13T15:37:33.059-05:00Courtney, I see your blog and it always makes me c...Courtney, I see your blog and it always makes me cry. I know about you and trip through mandy and michael and honestly at first didnt realize the severity of his condition. Its easier for me not to read this blog because knowing exactly how he is doing kills me. Maybe I feel like if I keep a distance, it wount hurt so much to watch you all in pain. I know that mandy is a rock and completely dedicated to you both and that she will be there through it all. I pray for you every day and hope that one day, I will get the honor of meeting you so I can hug you tight!<br />Brenda SisonNew Orleans Wedding photographer Brenda Sisonhttps://www.blogger.com/profile/12173228421070177677noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-31815992516642021222011-07-12T23:29:35.528-05:002011-07-12T23:29:35.528-05:00God Bless you and your family. I pray for Tripp a...God Bless you and your family. I pray for Tripp and your family. You are my hero.Floridahttps://www.blogger.com/profile/12959406052992491164noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-2755838789554359042011-07-12T23:13:05.968-05:002011-07-12T23:13:05.968-05:00My heart is breaking for you and for Tripp. The l...My heart is breaking for you and for Tripp. The love you have for each other is so special. As others have said, I hope you'll stop letting the enemy make you feel guilty about ANYTHING. You're obviously an incredible mother. I'm praying for you!anniehttps://www.blogger.com/profile/08794189411033697332noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-47289832088294532612011-07-12T12:29:26.337-05:002011-07-12T12:29:26.337-05:00I recently started following your blog and have to...I recently started following your blog and have to say what an inspiration you & your little man are! I have a son with special needs, but we have never been through near what you are both going through. Thank you for being so real and sharing your and Tripp's journey with the rest of us. May the Lord continue to give you both a great sense of peace & joy amidst the trials you are dealing with.<br /><br />God bless,<br />LanelleThe Beaulieu Fivehttps://www.blogger.com/profile/10428644562065530716noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-61255217919541139272011-07-10T15:22:42.853-05:002011-07-10T15:22:42.853-05:00I am sooooo sorry that all of you have to go throu...I am sooooo sorry that all of you have to go through this. My son is fourteen yrs and fourteen years post heart transplant. He has been in the hospital two months waiting on second heart transplant. He deals with chronic pain every day from arthritis called ankylosing spondillitis, major cramping from malnourishment due to protein losing enteropathy(PLE). They replace what they can which also includes his immune system (hypogamm-not genetic)with IVIG. They say it is like trying to fill a bucket when the hole keeps getting bigger. Austin usually gets albumin at least twice in a week and IVIG every Friday. I can definitely guess how stressed, worried, live in moment, etc your family probably feels. I feel completely blessed and thankful for my son. I have treasured all our moments together whatever the emotion at the time. AND I do NOT think to far into future or I would stay depressed(I like to call it "partial denial". I know all the risks and tba after htx it could go bad fast due to all medical problems. I don't dwell on that. I am a fighter and my son has been a fighter since the day he was born. So keep fighting, support each, vent when you need to, love each other, keep the faith and take one day at a time(some times that might be hourly or minute by minute). Praying for your family!!!!!S Faye Lhttps://www.blogger.com/profile/03239786082577504604noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-40796468385044288112011-07-10T15:15:16.403-05:002011-07-10T15:15:16.403-05:00Thanks for the update. Tripp's pain must be b...Thanks for the update. Tripp's pain must be beyond our imaginations. I think that he should get anything he wants.<br /><br />I think that you are the most amazing person and the bravest and most loving mother! I am praying for Tripp and you.Maryhttps://www.blogger.com/profile/08963449539854358998noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-27419448285794368902011-07-09T00:03:54.457-05:002011-07-09T00:03:54.457-05:00My heart goes out to your little son and you. I c...My heart goes out to your little son and you. I can only imagine the suffering he endures and the feelings you have as you try to alleviate it. I'm glad you have a visiting nurse now and she was so successful with the blood draw.<br /><br />I wish I could offer you some kind of magical advice to help with bath time, but I'm sure you've tried everything.<br /><br />Could your son ever go in a jacuzzi set at a safe temperature and just let the bubbles wash him?<br /><br />His little leg looks excrutiating and I know you said his bottom is bad, too. Surely with so many medications available, someone could find something to give you that could be used as a topical numbing medicine to offer him some relief?<br /><br />I will pray for you and Tripp, that he find relief from his pain and continue to find little joys in his life to make him smile, and for you, to have strength, inside and out, because I can see how much energy it takes for you to be such a great mother.Khttps://www.blogger.com/profile/07033823622722768455noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-46101263545640249072011-07-08T21:59:51.576-05:002011-07-08T21:59:51.576-05:00Hi Courtney - I first want to say that I think you...Hi Courtney - I first want to say that I think you are doing an amazing job as Mommy. Tripp is indeed one blessed little boy (and you are one blessed woman to have such a handsome ham on your hands!). I've been following your blog for a while now (I guess you could say I'm a become a bit of an EB stalker since Jonah - a friend of a friend - was born). I work as a TA in a special needs classroom, and I know that there are several good devices out there that help non-verbal kids communicate. I've personally worked with touch boards and an app for ipod/ipad that's really great, but I know those might be difficult for Tripp to navigate. I agree with an earlier comment, and there has to be a raised-picture format out there, because there are so many kids with needs in that area. If the OT can't help you find what you need, try checking with some local special needs teachers - they should have some catalog resources that could help you out! Just thought I'd throw that out there! My prayers are with you guys!Samantha @ the Listener's posthttps://www.blogger.com/profile/08935747727554136436noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-24142903208750420572011-07-08T21:11:54.664-05:002011-07-08T21:11:54.664-05:00This comment has been removed by the author.Samantha @ the Listener's posthttps://www.blogger.com/profile/08935747727554136436noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-73884170603534932842011-07-08T18:33:32.717-05:002011-07-08T18:33:32.717-05:00Have you ever given a bath where you just used war...Have you ever given a bath where you just used warm or cool water-nothing added, to see how he reacts? I think I have read here and on other EB blogs about using salt in the water...I know how it feels to get salt on a cut, I can't imagine how it would feel to a child with EB. Can't something else be used? Or just use a stream of water to flush away the bacteria? Do you think that is what bothers him at bath even, the products you have to put into the water, or is it some other part of the process. I feel so bad for him( and you!) having to go through this horrible process all the time. Try something different if you can....maybe you've tried everything....I just wish I could help!Ginnyhttps://www.blogger.com/profile/03429632033668158717noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-313576477480798202011-07-08T09:30:18.530-05:002011-07-08T09:30:18.530-05:00Another first-time poster (found your blog from Pa...Another first-time poster (found your blog from Patrice, and I found hers from I can't even remember anymore...) - yes, if Tripp were my boy, he'd be getting anything he wants too! Spoil that boy rotten! He deserves every single nice thing that could possibly come his way (and so do you!).<br /><br />If you'd like another random internet stranger's opinion, I say if you think therapy would improve his quality of life and he'd enjoy it, then go for it. If you think he needs it just because he's "special needs" or you think it would make him unhappy, then forget it.<br /><br />My middle child had therapy for a while, and while he didn't get official speech therapy (just missed the cut-off) the OT did give us some ideas, one of which I think you could adapt for Tripp - could you put a raised picture of the character on the DVD/CD case, so he could feel which one is which?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-21213830476917848892011-07-07T22:14:55.129-05:002011-07-07T22:14:55.129-05:00Courtney, praying for you and your mom and that sw...Courtney, praying for you and your mom and that sweet baby! God love him! You are such a blessing to him as I know he is to you! Love, JeniferAnonymoushttps://www.blogger.com/profile/11365071400678923536noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-26066548946061456282011-07-07T07:41:41.881-05:002011-07-07T07:41:41.881-05:00Hi!! Just a comment from a speech and language pat...Hi!! Just a comment from a speech and language pathologist.....you and Tripp communicate in ways that no other two mother and son I know do!! He also communicates with your family...that is what it is all about. Do not have regrets over what you have done.....you are doing all that you could do at that time and if you can do more now...then go for it!!!<br />MeiganMeiganhttps://www.blogger.com/profile/17633367658987022051noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-19561494022707600802011-07-06T22:14:42.990-05:002011-07-06T22:14:42.990-05:00Courtney, Thank you so much for updating the blog...Courtney, Thank you so much for updating the blog as I don't know how you find the energy and/or time.... My Grace (3) and I pray for Tripp daily and you both pass through my mind many times throughout the days, especially when I bathe my 8 month old... To echo someone earlier that said if you could let us know when you bathe him, I would love to set aside prayer time at that time. Also as was said earlier, please don't let satan bog you down with guilt about PT's, OT'S, etc.... He is the father of lies and you are seriously giving your ALL and Tripp knows he has the best mommy in the world. Keep spinning some Elmo mommy ;)Wendy Bergersonhttps://www.blogger.com/profile/12309313161922916102noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-38924959723270536592011-07-06T20:02:34.707-05:002011-07-06T20:02:34.707-05:00Courtney,
I have been following your blog for awhi...Courtney,<br />I have been following your blog for awhile now. I want to let you know that you and Tripp are in my daily thoughts and prayers.Christinahttps://www.blogger.com/profile/11144260159611591019noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-21780308605243123122011-07-06T17:35:52.154-05:002011-07-06T17:35:52.154-05:00Forgot to mention that I got the book that I think...Forgot to mention that I got the book that I think you recommended about the little boy who went to heaven. It was great!! Even my husband enjoyed it and passed it on to his coworkers at hospice. Thanks!Traciehttps://www.blogger.com/profile/00730836111716566185noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-23748250818475291962011-07-06T17:32:14.659-05:002011-07-06T17:32:14.659-05:00The pictures that you shared in your post were pai...The pictures that you shared in your post were painful to look at. I'm so sorry that your little man is suffering. It's not fair for him. It's not fair for any baby to suffer like that. I'm praying for his peace and healing. You're a wonderful mom and a wonderful human being. Your love for your son is bigger than a mountain. It makes me stand in awe to think of what God's love for his children must be!Traciehttps://www.blogger.com/profile/00730836111716566185noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-20556769248590775052011-07-06T15:48:00.629-05:002011-07-06T15:48:00.629-05:00Please don't second guess anything or at least...Please don't second guess anything or at least let it be an inhibitor to every little bit of happiness and peace you require.<br />As parents we do what we can and in the grander picture our love and devotion for our child is paramount. You have that in spades your path from any given moment will be what it needs to be. But if you think the range of Tripps care should broaden, then advocate or find someone a friend that can help and go for it. The squeaky wheel gets greased, I doubt very much you'll have to squeak all that loud to get all those things for Tripp. You are an exceptional MOM! Great work and keep up with being you.<br />Our dressing changes for our little RDEB sufferer have too become somewhat of a stressful and the anxious time, I feel your pain.<br />RPeter https://www.blogger.com/profile/10433499975397643820noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-91214157395283881652011-07-06T12:30:49.571-05:002011-07-06T12:30:49.571-05:00I'd give him anything and everything he wants ...I'd give him anything and everything he wants too! His poor little leg just makes my heart hurt for him so badly. I can not even imagine the pain or discomfort he must feel. Praying for ya'll always. Ashleyashpuckhttps://www.blogger.com/profile/07519317750957309709noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-41428271964422978152011-07-06T01:44:40.525-05:002011-07-06T01:44:40.525-05:00Courtney, I don't know how you do it. I know ...Courtney, I don't know how you do it. I know your heart must be breaking. It must be the nurse in you that takes over at bath time. I'm a nurse, also. I know there are times at work that I would have to put on my "nurse face" just to be able to get thru a tough procedure. If it were my own child, I'm not sure I could do it. You are a very strong person. I wish I lived closer so that I could help you out.<br />Tripp is such a strong little boy, and so lucky to have you for his mommy. The way I see it, give him whatever his little heart wants. Spoil him for ever time he has left. He suffers so much with his dressing changes and bath. I don't think an adult could cope with so much pain.<br />My thoughts and prayers are with you.<br />Carla Spradlin, <br />Taylors, SCcarlahttps://www.blogger.com/profile/03220167003874256410noreply@blogger.comtag:blogger.com,1999:blog-5348155237652648174.post-46462436211256337092011-07-05T23:08:25.759-05:002011-07-05T23:08:25.759-05:00You have an amazing little boy and it is obvious w...You have an amazing little boy and it is obvious what wonderful love and care you and your family give him. I cannot even imagine how difficult it must be to have to do painful things to him like a bath. And, yep, I agree--spoil him every second you can! I hope the PT,OT, speech, etc, help with the communication so you can spoil him even more!Carolhttps://www.blogger.com/profile/07823736341452375158noreply@blogger.com