Monday, September 27, 2010

Big prayers for Big answers.

For some reason, today I think that everyone should thank God for their babies- for their health, their ability to speak and ability to eat, their fingernails and toenails, their skin, their eyes... everything about them.  Because a having a healthy baby is a gift- a gift that's not to be taken for granted.  

I would give anything (and I mean anything... my right arm, my leg... anything) to be able to just pack Tripp up and take him to the beach, or to the mall, or hell- just outside.  I would do anything just to be able to dress him in normal clothes, or just slap a diaper on him without having to bandage his bottom back up and lube everything in aquaphor.  But most importantly, I'd give anything not to have to watch him in pain everyday.  Not to have to watch him try and just open one eye because the other one is swollen shut and pouring like a faucet.  No to have to watch him clawing at his neck (thank God for no fingernails) because the sores around his trach itch him.  Not to have pull a bandage off of a sore while he cries in pain.  Or I'd give anything for him to be able to wake up happy and not in pain. 

Sorry but every now and then I have to vent.  I wouldn't be able to make it through unless I did.  I just go through the motions every day, putting on a happy face for Tripp, and all cried out.  But if I don't let it out every now and then, it builds up.  My days and nights and weekdays and weekends all run together.  And no matter how much coffee I drink, I can't get my energy back (I need to get my butt back on the elliptical).  I'm even sleeping a little better at night since Tripp has been sick (guess he's trying to catch up).  I just feel BLAH.  I have so many emotions and thoughts and questions going through my head right now.  I can't help but wonder about what the next year or next few months are going to bring for us- in many ways.  I'm praying hard.  I started reading a book last night called The Power of Positive Thinking (yes, I am in the middle of about 3 books right now) and I wanted to share some things from the book.  It says that "ordinary problems could be met by ordinary prayers, but when big trouble comes along, you have to pray deep prayers."  It also said that "God will rate you according to the size of your prayers."  And here is the scripture that follows "According to your faith, be it unto you." (Matthew 9:29).  So the bigger your problem, the bigger your prayer should be, right?  Right.  That's why I'm praying big... about what the future holds for us.  I have a feeling that I will have to make big decisions soon, about a lot of things in my life.  So big decisions- means big prayers.  

Tripp is doing about the same, maybe a little better.  I've been giving him Tylenol with Codeine about once a day, too.  And he seems to perk up quickly and play a little, then back to laying back in pain.  With all of the other stuff that's been going on, I forgot to mention his poor eye.  It's been so bad ever since surgery but I just haven't been able to take him back to the doctor with all the other stuff going on (plus there's not much for the doctor left to do!)  So I finally made a doctor's appointment for his eye tomorrow.  Don't know what they will do- we will possibly have to take out the symblepharon ring and just put the contact back in.  I don't know??  We will see and I will let you know.  I'm also waiting to get his stool samples back to see if he even has C-Diff.  So, I'll let you know about that too.  Also, his mouth has been bothering him so much lately, too.  So I'm trying to schedule a dentist appointment, too.  So that if he has to go "under" again for his eyes, we can get that mouth fixed, too (the dentist finally got her equipment in the OR at Ochsner!!!).  Anyway, that's where we are right now... I'm frustrated and want answers... but I'm praying BIG- because I want BIG answers:) Love you all. 

How this child smiles, I do not know... 



Love,
Photobucket

46 comments:

  1. Praying BIG prayers for you and Tripp.

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  2. Court, you are the strongest woman I know. Tripp is so lucky to have you as his mommy and we are praying BIG prayers for him and for you and your family too!! Love you! Rachael Arteaga

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  3. Courtney, I am so glad I added you as a friend on Facebook so I can keep up with Tripp's progress. You are an incredibly strong and amazing woman, and although you put on a front for Tripp, you are the epitomy of positive thinking, girl. To see you vent makes you human. I can't even imagine how hard it must be to see your sweet baby in pain every day, but God has given you this precious angel for a reason, a master plan that we don't understand and realize right now. You, my sweet girl, are an angel in training, and I can tell you, BIG things await you in your future.
    I am praying BIG prayers for you and Tripp.

    Love, Angelle

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  4. Courtney, Please know you have many others praying BIG with you and for you!! A blog is a powerful thing... a journal, and a release, a way to let feelings out and to accept the gift of others' love! We send it daily! We pray daily! You are not alone ~~ I do think of you as such a positive thinker already! The deep prayer stuff? God hears you when you whisper. You already have his attention my dear! ... and he loves that baby boy! God Bless! Hugs from Meme in Ohio

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  5. Courtney and family--I follow your blog every single day, and pray for the things I think you may want/need. I read now that you need BIG prayers so you can bet that those will going up for Mr. Tripp in a BIG way from Arkansas. Hang in there!

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  6. I am praying big prayers for Tripp and your family! God bless! Karen, St. Louis MO

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  7. Courtney,
    you are an amazing strong woman. Thank you for reminding me to be grateful and thankful for healthy children. It is too easy to take it for granted. You are a special person, with a very special son. I send my heartfelt prayers to you and your family. God is with you and may the Blessed Mother hold you in Her arms.
    Linda

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  8. Nobody will ever fault you for expressing your emotions. I have 3 healthy kids (3, 1 and 1) and every time I feel like things are getting out of control and I might pull my hair out I think about you (and all the other EB moms) and know that I have it easy, I have it so easy.

    Will say a big prayer for Tripp today. The videos you post always amaze me at how happy he is.

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  9. I will say some additional prayers for you and Tripp. I already include him in my nightly prayers but I will magnify my thoughts and prayers for him tonight and pray BIG for you. Keep being strong for your little guy and when you don't have the strength know that God will help carry you. Lots of love from afar.
    Laura V.
    Bergisch Gladbach, Germany

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  10. Courtney...sending big huge tremendous gigantic humungous prayers your way...There have been many periods in Casey's life that I have felt the exact same way...EB doesn't slow down and you can't get ahead of it..it just chips away at your child, your family, your marraige and their siblings..your brain is on constant overload as a mom trying to figure it all out and keep some normalcy in life for your child...I have been there..Hope you can reach a more peaceful time for you and Tripp...again...sending big, huge enormous, tremendous prayers your way of peace and healing...thinking of you...
    John and Beth
    johnbeth91@aol.com

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  11. BIG prayers are been said for your family

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  12. I'm from Bella's page. I always check up on Daylon, Jonah and Tripp. I keep you in my prayers too. You are not alone, even though it may feel so at times. God is always with you and you have a following on this blog and of course everyone who loves you and your family. Hugs to you, though I don't know you except from what you write. Try to get your strength back, things always seem better in the mornings.

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  13. Praying BIG with you Courtney. And how can he smile? He knows his mommy loves him for one thing! :)

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  14. Hi Courtney,
    Lots of extra prayers are being said for you, Tripp, and Randy. Venting is a healthy practice so please continue to do so. Please let us know how the eye dr. appt. goes. Maybe the contact is a better solution for Tripp's eye right now. He's just a "little knight" but inspite of all of his pain he knows just how much he is LOVED. I think his smiles are letting YOU know!!!!!!!!!!
    rachel

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  15. I have so many feelings right now after reading your update. I follow Tripp, Jonah, Bella and Daylon daily and I think this is one of the worst things that a child has to go through. I have 2 young kids and I think you're right, we do take their health for granted. I thank you for pointing out to me how grateful I should be and I very much am. Venting is a great way to release and it's free, that's the best part. I am a single parent and I vent often and I don't know how to explain it but it feels like a weight is lifted when we vent. You have every right to do it. I pray for Tripp to get some relief and hope for good news tomorrow. You're a great mom. A friend from the UP of Michigan.

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  16. Courtney,
    Marshall and Megan Epps are good friends of ours. We get updates about Tripp from time to time. My daughter tries to take Marshall's bracelet every time she sees him. It is my first time visiting your blog. I just wanted you to know that I am will continue praying for your family. I am so touched by your website. I pray that God continues to give you strength to be the wonderful Mother that you are. According to the Epps.... you are an amazing woman.

    Dennon Roberts
    Denham Springs, La

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  17. We are praying some big prayers for you, Randy, and Tripp. I pray that you have strength and wisdom in all the decisions you will have to make, especially those regarding Tripp!!

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  18. Hey Court. We are praying really BIG. May God bless you and give you strength. And, yes, I do thank God for my healthy kids. I no longer take so many things for granted. You are a special Mom.
    Kelli

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  19. Big HUGE prayers for Tripp, You and Randy. I wish that little guy are the peace and comfort the world has to offer.

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  20. Huge Prayers for you Courtney. You have more responsibility than most people could manage. You are entitled to vent and you are entitled to get enormous prayers answered. I hope the eye doctor has some answers for Tripp.

    Praying for Tripp too :) Much love to that sweet boy.

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  21. I so wish there was something more I could do for your family. I will continue to say prayers for you, Randy & Tripp. You have such a beautiful family & it just stinks that Tripp still isn't feeling any better. I hope you find out what's going on with your little man tomorrow. Many, many, many prayers & happy thoughts being sent your way.
    Brenda (Kansas)

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  22. Yes, Courtney, we'll be praying BIG for Tripp and you/your husband. May you find comfort and strength from knowing that so many of us are praying for your child. I wish there could be more people that you felt comfortable with to watch your son for a few hours just so you would get some rest physically and mentally. If we lived next door, I'd like to think that I would not hesitate to offer my help. Hugs...

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  23. I seriously HATE EB. Praying HUGE prayers for Tripp and you. You are amazingly strong. You are right, you cannot take having a healthy child for granted. Hugs from me to you (and gentle hugs for Tripp).

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  24. That picture speaks a thousand words. My heart aches for him. I really enjoyed talking with you tonight. I will continue to offer prayers for your sweet Tripp. Praying and thinking of you guys always! Love, Jennifer

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  25. Praying BIG for Tripp and your whole family tonight. He is the sweetest baby and I will be praying specifically for his eye and his trach area to heal a bit and relieve him from the pain.
    -Jen

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  26. My Dearest Courtney: I am so sorry that Tripp is still hurting so much. I know how awful it is to see your baby in pain.
    I am saying HUGE prayers for Tripp right now. Hang in there, it will get better. God is with you guys every single day. God has a plan for Tripp and he will never let you down.
    Please take care of yourself. We all love you and Tripp so much. Keep the Faith. God Is So Good. Love you guys. Love Leah's Nana

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  27. Courtney-
    HUGE prayers coming from Missouri. We think of you and your amazing little family everyday. I will continue to pray HUGE every day and night for you. God will listen and he will guide you Courtney.
    You are an amazing mother and with Gods guidance you will be led in the right direction.
    Thank you for keeping your faith and making me even more thankful for everything in my life that normally I would take for granted.

    Morissa Webb- Mommy to Jackson, EBS
    http://morissa-adayinthelife.blogspot.com/

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  28. Always praying for your sweet boy, love that smile!

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  29. I have been folowing your blog and praying for your son. He is such a special little boy. God has plans for him. I pray everyday for Tripp. I am so moved by your post today. Tripp is such a angel and he is so lucky to have you for his mama. I hope he feels better soon.

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  30. Courtney just wanted to let you know, I am praying right along with you. For the power of healing to come heal Tripp. Sorry things look this way to you. Just know we do care so much for you and Tripp and it breaks my heart to hear your pain and his. Thank you for reminding me not to take my childrens health for granted. We love you guys!

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  31. I'm a friend of Daylon's family and that is how I found your blog. Ever since, my family has been praying big prayers for Tripp. Following your journey makes me grateful for my healthy babies and makes me pray even harder for you that you many one day get to experience that with Tripp. You EB moms/dads amaze me. I think about you guys all day long. Good luck at his doctor appointment tomorrow. Praying always.

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  32. I'm a friend of Bella's family and have been following Tripp and all teh EB babies for the past few months! We are praying for all the kids and know it must be so hard. It's OK to vent - all mom's need to vent and I hold you and your family in prayer.

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  33. Hi Courtney-

    It's ok to vent - you wouldn't be normal if you didn't! :)

    EB makes me madder and madder every time I think about it. I HATE that sweet Tripp has to go through this (and I hate it for Jonah, Bella, Samantha, and all the other EB-ers I've come to "know" in blog-world.)

    Praying BIG prayers for sweet Tripp, and also for you and Randy as you seek God's face on the best ways to care for Tripp. He is blessed to have you as parents, and you're definitely blessed to have him. He just makes me melt every time I see his sweet face! (And my kids LOVE the pics you posted of his hiney awhile back!!) LOL

    Hugs to all of you from TX!
    Laura

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  34. You are absolutely right. We should not take healthy children for granted. I found sweet little Tripp after reading Patrice's blog. He is such a sweet, beautiful boy. I can't even begin to claim to know what you go through every day, but I think of you often. Sending up BIG prayers for all the EB babies and their parents.
    Elizabeth in NC

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  35. I've never commented before, but I couldn't NOT comment today. Sending BIG prayers for answers for you and your sweet boy. I know we all can't wait to see his "spunk" back.

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  36. Courtney,
    I teach pre-school and yesterday I told my little 4 year olds about Tripp and what he goes through and how brave and special he is in dealing with all he goes through. They asked me all kind of questions and I told them what I have learned from your blog. We have decided that we will pray for Tripp and Randy and you everday. Tomorrow I will tell them we need to pray extra hard for Tripp. You are an awesome Mom and Tripp is so blessed to have you. God always knows what we need, even when we do not Thinking of you so often and wanting it to be all better for you and your family.

    Marilyn

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  37. Courtney,
    My son Andrew, who is 3, can name Tripp, Jonah, Bella and Daylon all by sight. We read ya'lls blogs daily and check for updates. You are doing so great for Tripp. He is so blessed to have you for a Mommy. You just keep up the faith and keep doing what you are doing. And we will keep doing what we are doing - spreading the word about EB and praying daily. Here's Andrew's prayer for Tripp tonight: "God Bless Baby Tripp so that he gets better soon and I can give him a hug". I cried so hard after that. We think of you so often. I can't wave a magic wand and make it all better - but I will continue to pray and hope.

    Beth

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  38. Hey Courtney, Randy, and Tripp!

    Tripp, you bring your momma and daddy so much joy amidst the pain. Thank you for reminding us that every situation we face has its peaks and valleys, sometimes simultaneously.

    Courtney, thank you for letting loose on the blog tonight. It is a healthy outlet; it organizes your thoughts and feelings, allows you to relocate them out of your head and on to the screen, and allows others to give feedback, love, and support in a genuine way.

    I completely understand the perennial exhaustion... sleep...coffee...run run run...coffee...crash...start all over.
    It's like groundhog day.

    We are with the three of you.

    Tim & Angelique Ringgold

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  39. Still thinking about Tripp, his mom, and his family, and I'll pray those big prayers too right along with you.

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  40. Courtney,
    I was reading your blog at work and I had to hit my knees and pray for you and Tripp and Randy. Please remember how much God trusts you to care for his angel Tripp. Your strength is amazing!

    Heather in Nashville TN

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  41. Wow!

    I don't know how you do it. Seeing your child suffer is a heart wrenching experience... and the experience never ends for you. My heart and prayers go out to you and your family. I found out about Tripp at Diana aka Meme.

    ToOdLeS.

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  42. Courtney,
    I have two children -one is "healthy" and one has a seizure disorder. I still read your post today and want to thank you for reminding me how very fortunate we are. I can't imagine what you or Tripp go through on a daily basis *really*. I am thankful I do not have to; but at the same time so very, very sorry that you -or anyone else - has to. It is incredibly unfair.

    I don't have any words of wisdom or anything like that for you. As a matter of fact, I really am pissed FOR you because I cannot fathom not being able to keep your child from being in pain. There is nothing anyone could say that would make that easier, I assume. You asked for BIG prayers, so I want to offer you BIG prayers. Sending those up for you right now!

    xoxo

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  43. Wanted to say thank you. Thank you for reminding me to cherish my children, to hold them close, to not sweat the small stuff. When I am frustrated with my daughter receiving a poor grade on her math exam, I am reminded how blessed I am that she is able to even be in PreAP math because she is so smart. When my son is talking my ear off and I have had a long day and I tell him to "put a bubble in your mouth" so he will just hush, I am reminded of how much you wish Tripp could talk your ear off. So again, thank you for reminding me how blessed I am and thank you for reminding me to cherish what I have. I am praying BIG prayers for sweet Tripp and I am believing in BIG miracles for him as well.

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  44. Hi,
    I ran across your blog through Daylon's which I ran across through a girl that I follow who lives in Uganda and is now caring for a one month old little boy with EB. So crazy the way God pulls us all together. I had never heard of EB until I started reading about all of you and I can't even tell you the roller coaster of emotions I feel for Tripp and for Daylon and for you guys as parents. Just knowing what you must be feeling each day as you try to comfort your little ones. I know how much my heart aches for Tripp and I'm not his mom or even a family member or even an acquaintance, so I can't even begin to understand probably what you're going through. Just know that my heart breaks with you and tears run down my face as I pray for God to just heal Tripp. I'm not asking for any specifics, just a miracle for God to heal your son. He can do it, and I'm believing with you that He will.

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  45. Just to let you know that we are praying for all of you. I have you on my daily prayer list. I haven't written before, but feel the need to let you that you are not alone. Your extended friends think of you often.and pray for your strength.

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