Thursday, February 3, 2011

Hanging in there...

Maybe by a thread... but still hanging.  My little trooper is still fighting so hard.  He's been having good days and bad days, very inconsistently.  And a good day is defined by standing up in his little 5x5 area and playing with his toys for about 15 minutes at a time. The biggest issues right now would have to be his eyes, his mouth, and his trach/breathing.  And bath... I won't even go there. Terrible.

His eyes are just beyond horrible... there are no words.  And they are only getting worse by the day... literally.  He's becoming a little more frustrated as it gets harder for him to see each day.  You can tell by the way he reaches for things, and brings his toys all the way to the corner of his left eye to be able to see it.  Like I said before, the eye doctor said that his right eye already has half the vision of his left... and both eyes (the left one worse) have granulation tissue growing over his eyeball.  The right eye is more than half-way covered.  I've put a call in the the eye doctor... not really even knowing what I'm going to ask, but just making sure with him one more time that we have no other options.  For this poor child to lose his vision along with everything else going on, is just borderline cruel.  

His mouth just kills me.  He's had teeth since he was about 3 months old.  Imgaine how it would feel if you had never brushed your teeth for almost 2 years.  I really just can't imagine how his poor mouth feels.  Then on top of just "feeling yucky," he's got sores covering his lips and tongue.  Not to mention, that he must have cavities and rotting teeth in there that I'm sure is painful.  I fully understand the dentisit's concerns about putting him out and trying to do something with his mouth.  It's somewhat the same deal as the eyes... if you irritate any of the mucous membrane tissue, it becomes raw and can fuse to any other surface.  There have been cases in other EB babies, where after dental work, their mouth has been fused together completely, with tissue sloughed off in places.  I'm not thinking I want to go there.  I just wish there was something we could do.  I've been using Biotene spray- but you can imagine how he loves that.

And his breathing- where do I begin?  With this weather the way it's been... he has been SO dry.  He can hardly stand up to play for 5 minutes without having to lay back down with his humidifier on.  And no- he will not wear it standing up.  Nothing can be "in his way" when he's standing and trying to play, including us people who are always in his face.  So I've been doing breathing treatments, high steroids, changing his trach when need be, and keeping him on his humidifier most of the day... and he's still having the most trouble he's had in a while.  I'm almost positive that it's the sore acting up below the trach.  And I don't like that at all.  But I'm doing everything I am supposed to be doing.

He hasn't left his little "comfort zone" in months.  When he stands up, we ask him if he wants to go outside, ride his car, anything... and the answer is always "no."  For a child who cannot speak, he SURE can get his point across.  But there are also times when I tear up because he will stand up signing "more" and we try everything to figure out what he wants and we can't.  He gets so frustrated and gives that pouty lip and wants to get back on the rocker.  It's so sad.  But MOST of the time, he can communicate with us very well and let us know exactly what he wants without a word.  He can say "NO" very well (just like any other 20 month old can), and now his "yes" is tilting his head all the way back with a big huge smile.  It instantly melts your heart.   

On another note, I'm sure all of you are very aware that a child with special needs puts a strain on a marriage.  Well, in our situation... that has surely been the case.  Randy and I have been seperated since July and Tripp and I have been living with my parents (who have been A-M-A-Z-I-N-G).  I have tried to be very respectful in keeping our personal issues off the blog, but I also know that it will be coming out sooner or later.  I don't want to go into detail and I hope everyone will respect that.  Both Randy and I love our son.  And everything being done is in Tripp's best interest.  I do, however, want to say thank you to Tripp's MeMe, who comes to help me at least 4 times a week- rain or shine, regardless of my good mood or my bad mood (which is hit or miss these days).
 And thank all of you for your support- this has been a difficult time for everyone involved. 

And with that... I will leave you with my precious angel...
whose smile gets me through the toughest of days.



Love,
Photobucket

71 comments:

  1. I don't know what to say. but I want you to know you are on my heart always.

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  2. Praying for you, Tripp and everyone. THe post brought tears to my eyes. I don't know what to say, but I wanted to say something...it all just breaks my heart. Prayers to you all.

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  3. Continuing to pray for Tripp, you, and randy. The Lord is with each of you and will continue to show His love to you.

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  4. Courtney, I had a bad feeling that's what was going on with you. I just hate this for everyone involoved.

    This post just BREAKS my heart and I really wish there was something that I could do.

    <3,
    J

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  5. (((hugz))) Praying for your little guy.

    Have you tried ASL for helping him tell you what he wants?? Or a Point & Speak? You would be amazed what an almost 2 year old has to say, once he has a WAY to say it. I start all my babies with ASL (tons of videos on You Tube to teach you some basics, like Eat, Milk, Sit Down, More, cookies, Play and I can help you too... We REALLY like the Signing Time Videos to teach us, and our vocabulary jumped by 50 words just using a few of the videos.

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  6. I wish I knew what to say... and I wish so badly to just wave a magic wand and make Tripp better. I hate that he has to go through this it just doesn't seem fair sometimes. I will continue to keep you and your little man in my prayers.

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  7. You have been in my thoughts so much this past week. I feel bad even telling your our story but just knowing your struggles have helped keep things in perspective. My 8 year old has had the flu and a complication has left him in hives all over. He has been miserable. And I have been a wreck trying to help him. One week. Hives. That's it. I don't know how you are able to do what you do.

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  8. I know how you are able to do what you do. He's your boy. Much love from Illinois.

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  9. Courtney,
    Aww Buddy, I just want to hug you and tell you everything is going to be okay. It sounds like there is so much heartbreak surrounding two people who are so loved by so many. I have a picture in my mind of you and Tripp with Jesus wrapping His arms around you, both of you have your eyes closed, filled with so much happiness. Know that is the kind of love we are sending to you both. Big, squishy, don't ever stop hugging me hugs... My prayers are yours, Tripp is never far from my mind.

    Love finds a way,
    Renee
    chasing-moonlight.blogspot.com

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  10. Praying for you and your family as always! I feel awful for you, way too much going on for you to deal with. ANd poor Tripp's eyes! Would it be possible to get a second opinion or is it too dangerous to travel with him. Boston's Childrens Hospital has an awesome pediatric cornea specialist (Dr Kathryn Colby). God Bless!

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  11. I'm so sorry you and your little man are going through this. Being a special needs mom I can feel your pain. Not only yours, but that of your precious little one. You both are always in my heart. (((HUGS)))

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  12. Tears. I wish you all the very best. xoxoxoxo

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  13. Courtney,
    I "found" your blog about a month ago. You are so brave, and Tripp seems like such a wonderful little guy. Thank you for sharing your story and teaching us about EB. I pray for you and your family.

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  14. Courtney, I've been a blog reader for so long and I keep Tripp in my prayers always. You and Tripp are both so blessed to have each other. He is the bravest of boys and you are the bravest of mommies. I have two young boys and when I feel overwhelmed I think of you and you inspire me to be better, more patient, more kind. Much love & prayers.

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  15. God Bless you and your gorgeous son,
    you have taught me so much about patience and unconditional love. I really look forward to hearing from you and getting notifications about Tripp. You both deserve the best, you really do. You're a wonderful parent..something that I am inspired to be when I am your age.
    Thank you for sharing your personal stories with us it's really a selfless thing you are doing.
    Prayers for you and your precious baby.

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  16. Many prayers, all the way around.

    Blessings

    Melissa

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  17. Oh I am so glad you posted I have been thinking about you all and praying daily. I cannot begin to imagine...
    May the Blessed Mother and Jesus embrace you both. I pray you have strength and that you can feel the love and support from everyone out here.
    Linda

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  18. :(. poor little guy. thinking of yall!

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  19. Thinking and praying for you and your family. God is in control and looking out for lil Tripp. Precious baby boy!

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  20. Praying for you. From one special needs mom to another. God will never leave you where his Hand of protection cannot find you.

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  21. Hi Courtney: Thank you so much for the update. I am so sorry to hear that Tripp is still in so much pain. Your family is always in my prayers. Think about you all the time and I am still amazed at your strength. I wish I could give you a big hug too.
    Hang in there and please give your precious son a big hug and kiss for me. Love you guys. Love Leah's Nana

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  22. Courtney, I am so sorry, I cannot imagine how difficult things must be for your family right now. I pray for you and Randy to get thru this. It is so much more difficult for Daddy's to handle things like this. I guess that is why God gave us the joys and heartaches of being a mother.
    Tripp is in my prayers daily. I've taken care of adults that have been no where as sick as Tripp, but don't handle things any where close to how he does. He is one strong little boy. Thank you for keeping us updated. Know that there are love and prayers coming to you from all over.
    Tripp, Bella, and Daylon have given me so much over the past many months. I know there is a cure out there, we just have to work hard to find it. I am so sorry that these little ones have to suffer till then.
    Love and prayers from Portsmouth, Ohio

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  23. My heart breaks daily for Tripp and for you. I am so sorry that your marriage is suffering- that must be so difficult. Neither of you are ever far from my mind and my prayers. EB is so cruel and unfair and I just don't even have adequate words to express to you how I feel. Thanks for being such a wonderful Mommy to Tripp and thank you for sharing him with all of us strangers.

    With love and peace,
    Kristi, Castle Rock, CO

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  24. I will not forget your Tripp and you in my prayers and will ask all my pray warriors to storm Heaven for your little guy!I know there is nothing I, or anyone could say to make this better. I am so sorry.God knows what is right for us and one day you will understand it.

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  25. So sad to hear that times are tough between you and Randy right now.I am praying that it will all work out and that little Tripp will grow up with both his mommy and Daddy around.Praying for your little man as well.~Nikki

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  26. Courtney, there are no words that can say what I want to say. I know this was never the plan. Your Tripp is an amazing boy, who touches people everywhere. I hold you all in my thoughts. You probably don't feel strong, who could possibly watch their child go through so much pain, but you personify grace and strength like no one I've ever met. I know that Tripp adores you and is proud of you too.

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  27. Praying for you and your family constantly! Every day without fail. To the extent that we can, we'll go through this journey with you by praying you through it. I believe in miracles and I'm praying them for Tripp and for your marriage.

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  28. I wanted to let you know that I am thinking of you and as always praying for sweet Tripp. That picture of him makes me want to go through the screen and kiss his cheek.

    Denise WI

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  29. Like so many others I wish I could give you a hug. Hang in there...thinking of you often. -Lisa

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  30. My words seem so inadequate...but I just wanted to let you know that I keep your family in prayers every day. In addition to Tripp's troubles, I am so sorry to hear your marriage is struggling. I will pray that you and Randy are able to work through this.

    You are an angel on earth.

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  31. tears are falling.....you have inspired me to be a better mom. I look at all you do for your son and the love you have for him. My heart breaks for you as you go through this yucky time in your personal life. You are a beautiful person who I have learned so much from. Tripp is a lucky boy to have you as his mama. xoxoxo praying for you guys!

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  32. I am so sorry Courtney. I am sure your parents are LOVING having you with them, being able to be there for you. You are amazingly strong Courtney~ I am praying for you!

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  33. courtney - you are amazing...in every sense of the word. it sounds like you learned that from your parents :)

    i'm keeping tripp, you and your family in my prayers.

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  34. Your post brought tears to my eyes! I could stare at your precious Tripp for hours! What an amazing little boy! And, you I can't even begin to tell you what an amazingly, strong women you are - Tripp is truly blessed by God in choosing you as his mother! I am so sorry that things are so tough these day! Saying lots of prayers for you!!

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  35. I love u guys! With all my heart! God's got a big plan for you and tripp;)

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  36. Thinking of you Courtney and praying for you and Tripp. Your son is beautiful.

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  37. You and Tripp are in my thoughts and prayers. You are such an amazing mother tho days like this can get the best of you know are are being the best mother you can to him. Wishin you the best in the future.

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  38. My heart just weighs so heavy reading your post. I can hear the frustration, the exasperation, the "what else can I do????" You just keep loving that boy as you do so well. You are a PHENOMENAL mommy, with a phenomenal family around you. God bless you guys.

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  39. Oh Courtney, something told me that might be what was going on. Will pray for God to bless you and Randy and keep you unified as you take care of Tripp.

    And Tripp - oh that sweet boy. I HATE that he hurts so much. My kids and I are praying for him and so wish there was something else we could do for him and you. I know that prayer is better than anything I could try to do, but you know what I mean. If you do think of something, though, please let me know!

    Love from TX,
    Laura

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  40. wishing tripp hundreds of pink pigs. sweet boy.

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  41. This post has me in tears. I seriously can't handle all the pain that Tripp is in. It literally tugs at my heart. I can't imagine the immense pain that you feel watching your sweet sweet boy suffer. I wish I understood why all of this is happening to Tripp and to you. It is cruel. I hate EB. Praying even harder for some relief for your sweet boy. I wish I could give you a hug too. you are a supermom no doubt.

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  42. TY for the update. I check every day to see how Tripp is doing. I am praying for you all. Please take care of your self. EB suck!! If I lived closer to you I would love to help with anything. TY so much for the updates. I am sorry you are doing this alone. I have seen your mom is a big help in the past and i am glad you have their help.

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  43. I am sitting here with chills. I am so sorry that things are not going well. Please know Courtney and Tripp that you have prayers coming from around the world your way. I am so sad to read of your separation. You have been through so darn much! You just need a little break. I don't know how you do it but you are a true inspiration. Take care!

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  44. Courtney, I pray for Tripp every day. I am so very sorry for the pain you deal with every day. This post was very tactfully written about your marriage. Your strength, patience, and love radiate through your blog. You are an amazing person.

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  45. Like others, I check here daily (I found you through Jonah) for updates and always have Tripp on my mind and in my prayers. God bless you Courtney as you comfort and care for Tripp. His journey has made such an impact on others through your sharing. Your patience, love and enduring strength in caring for Tripp is an inspiration to us all ... to be better mothers ... to be better people. We'll never understand why sweet Tripp was picked to carry this cross but it's obvious that you were handpicked to take care of him while he does. You're a wonderful mother.

    We're praying for you in NC.

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  46. My heart is heavy for you and your Little Man...I wish to comfort you, but I have no words...but I will say that your little Angel is so lucky to have his Mommy Angel to care for him...blessings to you both. Keeping you in my prayers...

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  47. Leaving you my love and prayers.
    Ia ms so sorry that Tripp is having such a difficult time right now. I am sure your Mother heart is aching.

    <3

    Cheryl

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  48. You are such a strong person and great mother with a beautiful little boy. I pray for you and Tripp every night. My heart has a very special place for EB kids and their families.

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  49. "I have found the paradox that if I love until it hurts, then there is no hurt, but only more love." - Mother Teresa

    Take good care of that love - you are an amazing mother and an amazing woman.
    Heather

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  50. Courtney,
    I have followed your blog journey for over a year now and I so admire the person and mother you are. I'm praying for you and Tripp and working on a miracle for you.

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  51. Courtney:
    Pope John Paul II had a special place in his heart for the innocent and the hurting. I will pray to him to intercede on Tripp's behalf. Miracles still do happen!
    Praying hard for you and your family.

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  52. Hi Courtney,

    I just came over from Jonah's blog.

    I can't even fathom for one second what you must be going through. I'll be praying for true joy & lasting peace for you, Tripp & Randy as you endure such a horrible struggle.

    Sending you love & prayers from BC, Canada.

    Love in Christ,

    Jen

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  53. Dear Courtney,
    I came here from Jonah's blog, but this is not the first time I will go to bed and include you and Tripp and now your marriage in my prayers. My heart breaks for you as Tripp's mom, and for the physical pain he must endure. I have no words, but we have a God that hears us even when we fall silent. Praying for you from Wisconsin.

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  54. My heart dropped when I read this post. I was afraid that you might have been having problems in your marriage and I am just so sorry that this is an added stress you have to endure.

    I also hate that Tripp continues to suffer so badly. I can only imagine the pain and agony you must be feeling as a mother. No one wants to see their child suffer.

    In my prayers!

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  55. Courtney, I am so sorry to read this post and just want you to know that although Tripp is definitely a hero- you are also a hero, for the grace and strength you have to be such a soldier for your son. I can't imagine the love he must have for you, and you for him. Me and my family pray and think of you daily, and will continue to do so.

    Love for you from Metairie, LA!

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  56. So very sorry to hear all that is going on with your precious boy and about the separation. Fervently praying for things to start looking up - God knows the depth of your family's suffering

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  57. The tears fall down my face ...
    I accompany you in silence, but today I want to tell you that my heart, my thoughts and my prayers are with you guys.

    A big hug and kisses with love
    Sandra from Portugal

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  58. Mama hang in there. You just continue to BE in the moment, not looking backwards or forward but enjoying the precious time called "NOW". It is hard to do, but with that mom of yours you can. You and Tripp are life livers, lovers and fighters, and can do it. These precious moments of now are shaping you forever. How you are handling all this has been absolute Grace. Hardships make some turn to so many horrible things: distractions, demons, or selfish acts to name a few. But, in you, they are defining you and the rest of who you will be in this world. It is hard, but it is meaningful.

    Like I learned the hard way, struggles show true colors. And know what you found out? You SHINE girl. YOU. 110% of the time. You and Tripp shine brighter than the population put together, and God isn't the only one who sees it. We ALL see it and are moved and inspired. And in others, sometimes those true colors are not so bright. And maybe the dull colors could have remained hidden for a while, disguised. Smoke and mirrors. But truth comes out. Eventually. Unfathomable as it is, the unsightly true colors are often found in the hearts of those we thought we knew or that loved us the most. Being apart is hard. HARD. But sometimes, it is easier than being together. So, I applaud you for doing what you need to do to have support and unconditional love 24/7.

    If anyone, ANYONE else in your real life or in Blogland gives you grief for this situation please, honey you give them my contact info or give me theirs. ;)

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  59. This comment has been removed by the author.

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  60. I'm a long-time lurker who stumbled across your blog several months ago and fell in love with your chubby-cheeked guy. He's just a beautiful little kid and I'm sorry to hear that he's going through this rough patch. Although I imagine you know how to treat EB better than standard doctors and nurses, do you think that hospitalization would help? Does DEBRA have any new suggestions on care? I can't imagine how painful and frustrating this patch must be for both of us, especially with no easy answers. Just know that people are thinking of you (even lurkers!) and that they're pulling for your brave little man.

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  61. Sending you lots of love and hugs and prayers. I have never commented here before but I have been reading you blog for quite some time. Always thinking of you and your sweet baby.

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  62. Courtney, I am sending you all my prayers for Tripp. I sat in church yesterday and just talked to god about this amazing little boy who I know he knows so well and what he is going through. My heart aches so bad for you as a mother, please know that you and Tripp are so strong and carry so much that when you feel you can't anymore god is always holding you both up. But by your faith and words I know you already know that. We love you and Tripp and pray for him always.

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  63. Just want you to know that I check your blog on a regular basis...I don't know you, you don't know me. I found your blog through Jonah's blog. I want you to know that I AM PRAYING for you and for Tripp. Sometimes I don't even know WHAT to pray, so I simply lift your name up to the Lord knowing the HE knows....
    In Kansas City,
    Kathryn

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  64. Hugs and prayers from a mommy in SC.

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  65. Courtney,
    I'm saddened even more to hear this news with everything else all of you are going through. I pray for God's will for Tripp, you and Randy. I pray everything works together for God's Glory. I cannot imagine the tremendous & unbelievable stress, strain on a marriage. I also know you and Randy both love your precious Tripp and even though Tripp's needs are special and unimaginable, TRIPP IS A SPECIAL & UNIMAGINABLE BLESSING! I know beyond doubt that you and Randy have Tripp's best interests first. I pray you and Randy can cling together as ONE & the Lord's will be done in your marriage. I admire you as a mother and know God chose you to be Tripp's SPECIAL MOMMY!!!
    With Love and Hugs for ALL of your family, especially for SPECIAL UNIMAGINABLE TRIPP!
    ~Lori

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  66. Don't know what to say.... you are an amazing mom. We are praying hard for you and precious little Tripp. Sending love & hugs

    Sonu & Salil.

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