Wednesday, March 10, 2010

Tripp's eye.

Hey guys.  The past few days have been rough.  Monday morning Tripp woke up with a swollen eye.  I'm thinking he has a corneal abrasion and he rubbed his eye so much in his sleep that he caused a huge blister under his eyelid, too.  So for the past 3 days, he has barely opened his eyes and when he does, you can tell he is in excruciating pain.  Corneal abrasions are common in Junctional EB and we have just been lucky that he hasn't gotten them until now.  It always something... everything was going good and then all of a sudden he wakes up with this.  He has been a totally different baby since Monday.... just plain miserable.  It's so so sad to watch him like this.  I mean, how much more can he take?  EB has to be the most horrible disease in the world.  I have been trying to keep him a little bit sedated with Atarax (like Benadryl) to keep the swelling down and make him a little more comfortable.  His pediatrician, Dr. Defusco, called him in some Tylenol with Codeine last night to help with the pain and try and keep him sedated.  She said the more that he opens his eyes, the more damage he's going to do to the abrasion.  I also asked her about some numbing drops, but she said that they would cause more damage as well, which makes sense because he wouldn't be able to feel it.  So Dr. Defusco is trying to get in touch with the eye doctor for me to see if there is anything else that we can do.  I've been having to keep the lights off and the fans off because it just irritates him more.  Talk about you might as well just put me in a looney bin... I can't get out of the house already... NOW it's a dark house that I'm sitting in.  I emailed Meg (Leah's Mom) Monday when this all started.  Leah would get the corneal abrasions all the time.  And I knew Meg would be more of an expert than anyone.  She's so great.  For info and for support.

This is such a hard thing to have to watch.  I pretty much almost lost it Monday night.  It's like, even with the trach, there is always something you can do.  Well with his eyes, there's just nothing you can do.  Will it heal?  I don't know.  The blister on his other eye still hasn't healed.  So it's just something that we are going to have to deal with.  That's what just stinks.  I just feel like I have been so positive and so thankful and then things just keep on challenging me.  It's so hard to be positive all the time.  But I know I have to be for him.  The worst part is that people just don't understand.   They don't get what really goes on in this house.  I wish someone could live our life just for one day because unless you live it, you just can't even begin to understand what it's like.  No, I don't get to get out of the house for any amount to time.  Randy and I don't get to go out to dinner together, or go anywhere together.  If I need something- ANYTHING, I have to ask my mom, or sister, or someone to go get it for me.  And sometimes, depending on the weather, I can't even take him outside because it's too hot, or too windy.  We don't get to lead any type of normal life whatsoever.  And please don't get me wrong... I live every single day to take care of my baby boy and I wouldn't trade him for anything else in the entire world.  But I'm not saying every day is easy either.  It takes everything in me to get up, put on a happy face, and keep going.  He is what keeps me going.  I know that my purpose in this world is to take care of my baby boy and give him the best life I can possibly give him.  And I fight each day to do that for him.  I want to take it away from him so bad... I want all the sores, all the pain, all the tears, everything.  But I know I couldn't handle it like he does.  I just want to hug him and cry... I could just do that for hours.  The way he's looked at us these past few days is just pitiful.  He's had such a sad look on his face and it makes me so so sad.  Please Please send some prayers our way (I know so many of you already do and I appreciate it SO much.)  Thank you.

Well, tomorrow is Talk Less Thursday, but I took way too many pictures in the last week to post them all tomorrow, so I'll post a few today, too.  These are all before his eye problems started...

Daddy's birthday cake...


Admiring his Daddy... 






Cheese...








Big Boy... all by myself!! 








First time sitting up in the tub!! 
He loved it!




Booty Butt Shot...

More to come tomorrow on "Talk Less Thursday"... 
Love,


31 comments:

  1. Oh Courtney, I don't know what to say. I don't understand how you do it. I can understand why, but I just don't know how. You and Randy and especially little Tripp are (insert very awesome powerful indescribable word here). God is really using you big time for His good works in the lives of so many. We all know you adore and treasure every moment with Tripp. You must be beyond exhausted. Prayers are going up everyday!

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  2. oh Courtney, I'm so, so, SO sorry. I'll pray for him. I'll pray HARD for him and for your family.

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  3. No, no, no!!! I HATE that this is happening your little Tripp. I am so sorry. We may not know each other by I pray for you (all of you) always. I hate EB too!!!!!! HATE it!! Take care sweet girl.

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  4. Maybe I should re-read my post before hitting submit. I am just so upset I did proof read and fix my mistakes. You get what I am TRYING to say :)

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  5. i am praying for you...i think you are an amazing mom (all you EB moms are!) and it is humbling to hear your story....thank you for sharing your heart and i think you are entitled to feel all that you are.

    praying. thinking of you...

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  6. Will pray for yall. Not sure how to say this, but thank you for your honesty, about everything, how hard it is, how much you do and care, how you wouldn't trade your sweet lil boy for anything, how your every day life is. You're so amazing to open up your heart to your readers. I think it helps for more specific prayer.Which is great. Praying for your family...healing, peace, patience, sanity!
    your sister in Christ

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  7. I'm praying for your sweet boy. I just adore Tripp although I don't really know him. He's the neatest little guy and I just despise EB and what it's done to his little world. Keep the faith Courtney -- I'm believing God for the healing of his little eyes. Nothing is impossible for Him!

    Hugs,
    Lisa

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  8. So precious, you are truly an amazing mom and I pray that you are able to continue enjoying your precious gift from God.

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  9. I agree that EB is the WORST disease EVER!!!!
    I remember MANY days where we lived in the dark because of what EB did to my sister's eyes. Many prayers lifted up for Tripp & his mommy & daddy!!

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  10. “Come to me, all you who are weary and burdened, and I will give you rest.
    Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls.
    For my yoke is easy and my burden is light.”
    Matthew 11:28-30

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  11. ugh i hate that this is happening! I have no idea how you do it, or Tripp..but it must hurt you so much more this week when he is looking so unhappy and you know there's more going on that you can't do much about. I'm beyond sorry :( You're amazing parents and doing a great job for your baby boy. Praying for strength and healing.

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  12. I heard of your family from Patrice's website. My heart breaks for you and your family. I'm praying for you guys. Jenny

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  13. Oh Courtney: I am truly sorry that Tripp has this problem. I know how hard it is to see him in this much pain. It just breaks your heart, doesn't it? Please remember that so many people are praying for your precious son. Please take care of yourself Courtney. Give Tripp a kiss for me. Tell him Leah's Nana is praying everyday for him. I HATE EB!!!!!!!!! Love you guys. Love Leah's Nana

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  14. Coming over from Jonah's site. You have a beautiful family!! I have so much respect for families living with EB. Please know I will certainly keep Tripp in my prayers.

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  15. I am so sorry for all you guys and Tripp have to go through. It just isn't right and it isn't fair...go ahead and be sad and mad and frustrated and upset, because you deserve it an anyone would be! Praying for your peace and sanity and moments of happiness when Tripp is feeling well enough to smile. You are an amazing mama. I just know it!

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  16. This is the first time I've visited your website. I found you from Jonah's blog. My heart breaks at the battle that you sweet moms face everyday. I admire you so much. God allowed our twin girls to be born 12 weeks early so we battled through our own trial for about the first 6 months of their life. They are normal little girls now. You and Patrice have an amazing strength and patience. Just wanted you to know that I prayed for you after reading Tripp's current struggles.

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  17. Yes-thank you for being so honest with how hard this is. I know as a mom we need breaks...so I can't even imagine how much an EB mom needs a break. I never get one, but you NEED one! Thinking of you...

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  18. I can only imagine what you go through each and every day and you are such a strong momma. God has a plan for everything...
    Tripp is blessed to have such wonderful parents ( I can tell just be reading your posts)... I pray that his eyes start healing and that he starts feeling better!!

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  19. If I were an angel baby born with special needs, sent to this earth for a special purpose, I would want you to be my mommmy!!
    You are amazing!!
    I love you with all my heart!!
    Mom

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  20. Oh, bless that last picture. THAT made me smile a big cheesy smile. :)

    I'll be praying for his eyes...

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  21. Hi Courtney-

    I am SO sorry to hear about this. Tripp is such a sweet baby, and I know he's tough, too! I'll pray for the corneal abrasions to heal quickly and for pain relief.

    And am praying for strength, encouragement and peace for you and Randy.

    Love from TX,
    Laura

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  22. I'm so sorry that Tripp is having such a rough time. He is so adorable and sweet. I can only imagine how difficult this is for all of you. I will be praying!

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  23. Courtney, I find it hard to find what to say... my heart just breaks for Tripp and all the EB kids that have to deal with this disgusting disease........ His pictures just melt me, I can't imagine being his parent... I would be a puddle!
    Since Jonah was born my heart and prayers have been poured out through tears for these amazing kids. I wish I could fix them all... but just know that in the words of Horton's Who's....... We are here, we are here, we are HERE!!!!!!! praying, crying, and being amazed at your children along with you.

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  24. I'm so sorry for what you're going through right now, Courtney. Poor little Tripp. I will be saying lots of prayers for him. God can heal that blister! I will be praying for peace for you as well. You are such a great mom to Tripp. He is so blessed to have you. Not very many people could do what you do!

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  25. Your faith and love and endurance and humble attitudes are awe inspiring....God is aware and knows of your stuggles- His blessings upon your family! You three are brave and true examples of faith and believers.

    I love Tripp, he is my hero, he is precious and so blessed to have such a dedicated, loving mom and dad! Courtney, how you do this everyday is truly incredible. You have an inner core of pure steel and a beautiful spirit. Much love to you all!

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  26. So sorry for the pain and isolation! Wish there was something we could do to take it all away, I am sending prayers your way!

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  27. Praying - praying - praying for you and your precious little guy.

    - Cara in Iowa

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  28. Courtney, you are such a wonderful mommy. I have a healthy baby and can't manage to keep my thoughts from wandering some days to how tired, sleep deprived, etc. I am... but you never complain. Please know that I am praying for your sweet little guy and for you and Randy.

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  29. I am crying reading about Tripp's eyes. This disease has to be one of the worst diseases on the planet. WHY?!!! Praying hard that Tripp's eyes heal . . .and quickly. Praying for your strength as well.

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  30. Courtney,
    I will definitely be praying for your sweet baby Tripp. I hate corneal abrasions, I think they cause one of the worst pains in an EB childs life. I have 2 children with RDEB and like you said it is so hard to watch them be in such excruciating pain and not be able to do a thing about it!! You feel so helpless and that is so unfair. My kids usually have to be in the dark for 3 to 5 days and take pain medication regularly when they have an abrasion. We also line their eyelid with an antibiotic eye gel, hoping that some of it seeps into their eyes and gives them some relief.

    I just love keeping up with how Tripp is doing through your blog. I hope and pray that he has some relief from these eye abrasions soon. We need to see that beautiful smile again!!

    God Bless, Molly

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