Saturday, October 9, 2010

Update

Beloved, think it not strange concerning the fiery trial which is to try you, as though some strange thing happened unto you:
But rejoice, inasmuch as ye are partakers of Christ's sufferings; that when his glory shall be revealed, ye may be glad also with exceeding joy."
1 Peter 4:12-13

Hi guys.  I know you are all wondering how Tripp is doing after surgery.  Well, he is definitely able to open his eyes more.  It still seems painful, though, as he has an abrasion in the right eye and that granulation tissue rubbing against his contact in the left.  I don't know how he opens them at all... But it sure is nice to be able to see both eyeballs again.  I wish I could say that the eyes were the only problem and that he's better... but that is definitely not the case.  Lately, the Motrin and Tylenol with Codeine isn't even giving him relief.  He has been playing more the past 2 days... like mabe an hour total a day.  But last night's bath was THE WORST to date.  I don't know what was different- but he was in EXCRUITIATING pain.  And completely inconsolable. 

 Something else is going on (and I know you've figured this out) but in EB, it's all about fixing one problem at a time.  I just don't have a clue what's going on.  Mom and I are thinking now that it could be his mouth (an abcessed tooth, cavities, or something else we are missing other than all the big huge sores).  And his poop has been a little sour-smelling lately, so something could be going on GI-wise, too (sorry, I know you really wanted to hear that).  OH- and GET THIS----- last night he was running 100.7!!!  No, it's not a really high temp (or in a normal child, a temp at all) but for him- this is a sign of something going on... he always runs between 97.5-98.5.  BUT- what did I tell you would happen???  The cycle would start again?? Surgery, fever, antibiotics, diarreha, blah blah blah.... Just please say a prayer that this is NOT the case AGAIN! 

Anyway, here is the deal with the dentist.  She called after our visit and told me that she wants a second opinion before we put caps on his teeth.  She said she spoke with another dentist that had to prep an EB child for crowns... and apparently they have to spray a bunch of air and stuff in the mouth- to clean I guess... and she said that the child's skin just started sloughing off.  So, she wants to get a second opinion and see if the caps are going to be the right option.  I guess the other option would be to just put him under clean his teeth and check for any abcesses or anything else that could be bugging him (besides the 4 million sores in there).  So I guess that is what I will be doing on Monday... trying to get in with another dentist soon so that we can figure out what to do with his mouth.  

This poor child still lays with Mom or I in the rocker all day long... stiffening his legs and pulling them up to his chest.  There has just got to be something else going on in there.  He's never acted like this, even with all the sores and pain he's had before he got sick.  I don't know what the answer is.  But all I can ask for is prayers... I'm afraid if I let my pediatrician know how awful he's feeling, we will end up in the hospital.  And that is the very last place we want to be right now.  Please say some extra special prayers that we can find out what is going on and that whatever it is... that Baby T has the strength to fight it off.  Love you guys SO much... and I cannot thank you enough for all of your comments and kind words... I laugh and cry with all the wonderful things you say.  I am blessed to have so many people care for Tripp and I.  Thank you all.  

“If you're not actively involved in getting what you want, you don't really want it.”
-Peter McWilliams


“Guilt is anger directed at ourselves -- at what we did or did not do.  Resentment is anger directed at others -- at what they did or did not do.”
-Peter McWilliams

"Emotional pain is just like physical pain.  When your heart can't take it anymore, you just go numb."
-Anonymous




Love,
Photobucket

39 comments:

  1. Lord, please fill courtney and Anita with strength and courage to face the daily challegnes of Tripp's disease. Please fill their hearts with joy knowing that they have both made each one of his days a little better in some way.
    I ask that you Lord give the doctors and Courtney guidance and endurance to keep looking for his source of discomfort. Lord, although I do not understnad why, I trust You are hear with us and You have the ultimate plan. Please wrap your arms of comfort around this GREAT family.
    God Bless

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  2. You are so inspiring, Court. I know you've heard it a thousand times, but Tripp is soooooo lucky to have you as a mommy. I pray that this week will be a great new start for Tripp and he will return to his playful little self! Love you guys.

    “These things I have spoken unto you, that in me ye might have peace. In the world ye shall have tribulation: but be of good cheer; I have overcome the world.” John 16:33

    "I love the Lord because He hears my voice and prayer for mercy. I will pray as long as I have breath." Psalm 116:1-2

    Philippians 4:6-7
    "Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

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  3. Courtney,
    Tripp is such a strong little guy. Half the time I read your posts my eyes fill with tears. Today was one of those days. I hate that Tripp has to go through so much everyday just to live. I wish there was a safe, sure cure for this disease. I want to just rush you all up here, but there's so much danger in it all.
    You write so beautifully, and I often think that you put into words things which I have felt. I wish I could communicate like you.
    Have they scoped his G-tube? It might help to figure out what's wrong with his tummy. They say Pseudomonas smells sweet... I think it just smells gross... Maybe they can check for that. I want to help so bad! I wish there was something I could do. If you can think of something, just let me know! I have so more stuff to tell you, but I'll email you.
    I hope Tripp feels better today. Praying, praying, praying. Love you, Jennifer

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  4. i have commented before and had to again. your post just fills my eyes with tears...your sweet boy, your precious little baby boy. i so wish i had any words of wisdom, but i don't...just hurting that you and sweet tripp have to hurt like this :(. i DO know God will use it for His glory and that He will supply you with strength day after day, but i know things like that can sound trite in such circumstances. let others love on you and your family, and know you are being prayed for!!

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  5. As a woman who is trying to have a baby, I can't imagine the pain you experience as you watch your baby suffer daily. I will keep you and Tripp in my thoughts as I go through my day. I hope you find the solutions to ending his pain soon. All the best, Emily

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  6. EB is just awful. I can't stand that Tripp has to endure so much pain. Why? I don't think I will ever understand why some get the "easy" road and others suffer so much. Please know that you and Tripp are in my prayers every night. Wishing there was something I could do to take his (and your) pain away. Seeing your child suffer is just heartbreaking and having to see it every day is just too much.

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  7. Agree with Carrie, I don't understand why babies must go through EB. All I can do is to send you tons of hugs and prayers and don't forget to give him a kiss from us, too ...

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  8. Sending you both BIG hugs, BIG kisses, and BIG prayers!!!!! love yall!!!!
    Abby Anderson

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  9. Hi Courtney: I am so sorry that precious Tripp is still in so much pain. What the heck is going on? Sure hope you find the answers really fast. Watching Tripp in pain has to be the hardest thing you have ever done.
    Please take care and give that adorable son of yours a big hug and kiss for me. Love you guys. Love Leah's Nana

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  10. I wish I could do more for you. I can't imagine what you go through on a daily basis. My son Finn and I pray for you and Tripp every night. We will continue to do so. I am so sorry that you and Tripp have to go through all this pain. Take it day by day and keep your faith.

    All my love and prayers,
    Wendi

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  11. I have been checking everyday to see how little Tripp is doing and was praying for better news. I'm so sorry. I cannot even imagine how hard it is to watch your child like that everyday. You are such a strong woman and one heck of a mother !! Keep doing such an amazing job. And I will for sure continue to pray pray pray for him as I always do !

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  12. I check on Tripp daily and pray for you guys often. My "babies" are 17 and 22, but I know the fierce love you feel for Tripp. I so wish I could do something to help.
    Love to you from Cairo, Ga
    Scottie H

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  13. Courtney:

    If I had the right words, I would sure say them. However, even though I don't, I still wanted to send you my good wishes and let you know I am thinking about him each and every day. I wish LA was around the corner (we're in NY), but sadly it is not. Fortunately, your Mom sounds like another rock that is there for you and Tripp.

    Keep using your instincts Courtney. You know when something isn't right. I hope your sweet little boy feels better soon. As far as telling your pediatrician, I can only imagine your decision. You will know the right thing to do. In the mean time, I hope the dentist can help him get some relief.

    Many, many good wishes, prayers, and love for Tripp. He is truly an ANGEL!

    XO

    -Jordan from NY

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  14. I'm praying for you guys with all my heart. God is going to come through for you. I don't know how or when, but I know He will.

    I truly love Tripp and your precious family!

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  15. Bella's frineds from NJ are praying for Tripp!

    Tina in NJ

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  16. Abba, I don't know what to say. My heart is breaking - for Tripp and Courtney. I don't know how it feels - to watch your child suffer so much or to be the one suffering. I don't understand why this is happening. I don't know why Satan is allowed to have so much reign and why so much sickness and pain are allowed. I don't get it. I do know that you hurt right along with Tripp and Courtney. I know that you feel what they feel times a million and love them and desperately long for healing, peace, and wholeness. I pray that for Tripp, that his pain will be less and that the doctors can find out what is wrong. I pray that you give them wisdom and strength. I pray for Courtney that you give her more and more peace and hope and wisdom to know what's best. I pray your loving arms will wrap around them again and again and that they will feel your loving grasp. I have no words. I just want things to be better. Please give Tripp and his Sweet Mommy some relief, Abba. I'm begging you. In the powerful name of Jesus, Amen.

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  17. No words - just lots of tears and loads of love and tons of prayers.

    If I could take Tripp's pain for him, I would do so in a heartbeat.

    We Love You Tripp xxx

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  18. Courtney, my prayers are with Tripp and your family..God Bless

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  19. Dear Courtney,
    As always thanks for taking the time to give us an update on "the little knight". It just breaks my heart that he is dealing with so much pain. I was just wondering if they could do a CT scan, MRI, or Pet scan to see if something internal is going on. It was just a thought. Like you stated maybe something is going on with one of his teeth. I continue to pray for Tripp to feel better and to help lift the heaviness you must be feeling in your heart right now.
    Take care. God bless you and your family.

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  20. Tripp- I have been saying extra prayers for you baby. I hope whatever is going on resolves itself soon. Hugs, kisses and bunches of love.

    Denise WI

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  21. I have been anxiously awaiting an update on your precious angel. Will now pray for the cycle to be broken. "Hearing" you call him Baby T melted my heart, as I have a precious angel grandbaby who is also Baby T and a few months younger than Tripp. Stay strong for your little man. Continuing to pray. a scp resident

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  22. Oh, Courtney, I know that pain you feel. My heart hurts with you. May you and Randy and Tripp all experience peace tonight. Our love goes out to all of you. You are an inspiration to so many. That boy is SOOO lucky to be yours. Much love and respect, The Ringgolds

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  23. Courtney, I was relieved to see an update but so sorry to read that things aren't improving more. My heart hurts so badly for you ... know that you are being lifted up in prayer.

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  24. You guys have been on my heart. I just want you to know I am praying for you and for Tripp and for wisdom for the doctors and dentists. I am so sorry that you all have to endure this. Praying for peace and healing. Love and prayers! The Boltes

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  25. Baby boy, it's so hard right now. Please know there are people from all over thinking about you. I don't kow if that makes a difference, but you are on my mind sweetheart.

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  26. praying for you all Courtney. So sorry he is feeling so rotten.

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  27. We are praying for sweet Tripp - SO sorry he's hurting so badly. I know this is so hard for you, Courtney - I'll pray that you have strength and peace and encouragement, and also that whatever it is that is making him feel so bad will become clear.

    Love,
    Laura

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  28. praying for you every day sweet boy!! courtney, you are so strong!! even when you feel weak and sad you are being an awesome mommy!! tripp is blessed to have you! sending lots of love and hugs from iowa!!

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  29. Sorry Tripp is still feeling yucky. Maybe he has some sort of GI disease - like IBS or Chron's Disease. (I know - that's all he needs...). I do know that they can both run in cycles, and are usually worse come spring and fall. Hopefully you can figure it out soon and Tripp can start feeling more like his normal cute self!

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  30. Courtney, Randy and Tripp...sending prayers and hugs from South Dakota. Praying that Tripp's pain/discomfort will be eased. Praying that you feel God's hand lifting you up and giving you strength to go on. Praying for a cure for EB.

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  31. Courtney, I will continue to keep Tripp and all of you in my prayers. I pray that he will have relief from his pain and that you can figure out what is giving him new trouble now. Please know how many people are lifting you up and praying for you.

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  32. Ask and you shall receive, Courtney. I have prayed for Tripp today in Italy at Mass. I pray that you and your family, your mom "meme" too, are given the strength to hold your little man up when he is down, to comfort him, as only you all can do and to know the love of Jesus is with you all the way. I am crossing my fingers, like Tripp, that tomorrow will be a much better day!
    Love Meme

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  33. God love that sweet boy!!! I know you wish you could just snap your fingers and take it all away. I wish I could too! Praying for continued healing and for you guys to be able to quickly figure out what this new issue is. Whenever you are ready to change blog pics for newer ones, just let me know! Love, Jenifer

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  34. Sending love your way from Ponchatoula, LA. Saying a prayer for precious baby Tripp and a special one for you too :) . Hoping things start to improve soon!

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  35. Courtney, Randy & Tripp,
    I pray that God gives you physical and mental strength to go through what you are enduring. My heart aches for all of you and especially Tripp. He is such a little trooper. Thank you for taking your valuable time and posting. I know it is hard for you and I thank you. My class is still praying big prayers for you all.
    Marilyn

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  36. Still praying from Maryland. Hoping there are some answers soon so Tripp can have relief. You continue to amaze me with your wonderful mothering skills. You are truly an inspiration to me and should be the mold for all mothers out there. Keep up the good work and :) Love, Stephanie

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  37. Thinking and praying for you guys. Hope Tripp feels better soon. He is so strong and so amazing. He doesn't need any more pain. He is so lucky to have such a strong and loving mother.
    Karen

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  38. I will be praying for all of you.....I can not even imagine the pain each of you feel each day having to watch your poor baby in pain. My daughter got burned badly in an accident a couple years ago and it was the worse thing I have ever gone through in my life but luckily she healed within a few weeks. I pray that God will give you strength as you go through this day after day and that you know people are thinking of you. Big hugs to you and Tripp!!

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  39. Roths,
    I just heard about you from some random person on a baby website (well, not random, because God has a plan for each of us and I was meant to stumble upon that post, I suppose!)
    I just wanted you to know that I will be keeping you and baby Tripp in my prayers. I'm privileged to be one of many strangers to uphold you in my prayers.
    God grant you mercy and the strength to make it through each moment, and the peace that surpasses all understanding.
    Much love from California, God be with you...

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