Sunday, January 16, 2011

Update

Hey guys... sorry it's taken me so long to give an update.  I have a A LOT going on in every aspect of life:)  Thank you to everyone who sent me a message about an update.  It's so nice to know that people care about us so much and are so sincere in wanting to know how Tripp is doing.  

Since last Saturday, Tripp has had some much better days.  He has stood up to play more in the last few days than he has probably in his whole life.  I think it had a lot to do with me going up on his steroids and staying at a high dose for a while.  He was having so much trouble breathing the week before last that I had to put him on the high dose.  So I just enjoyed the heck out of my little man this week.  

When he is feeling good, he is just hilarious.  He's just plain rotten... there is no other word for it.  When he's standing, we make a little "path" of baskets and ottomans so that he can hold on and walk sideways.  Well, there cannot be a single toy on the top of his "pathway."  If there is, you had better watch your head or your toes, because he's throwing it off.  And he's got a good arm:)  He only wants one toy at a time... and when he's finished with that toy, he will throw it down and reach for another one until we give him the one he wants.  For someone who can't talk, he sure communicates with us well.  And don't dare talk to him in a "normal" voice, or mistakenly "correct" him for slapping you in the face... because he will give you that pouty lip and get his feelings hurt so bad and your heart will break into a million pieces:)  I love him so much.  

Yesterday and today, I could tell that he wasn't feeling AS good... especially today.  I started him on the Methadone for pain yesterday evening, and today I could tell he just wasn't the same.  But it started this morning when he wasn't breathing well.  He had to have oxygen because he was struggling so much.  So I went back up on his steroids and started back with his breathing treatments.  It's always something.  He just can't catch a break.  We have been doing every bath and every diaper change in the rocking chair.  And both are so extremely painful for him (whether it's a good day or not) and that takes a toll on me mentally.  I think it's hard for a lot of people to understand that even when Tripp has "good" days... there is still so much about those days that is so sad and so painful to watch.  

But I am hoping that today was just a fluke and that he will continue having some "good days" next week.  Please continue to keep him in your prayers.  And please keep me in your prayers as well during these upcoming weeks.  I've been having some really tough days and I've been having to deal with some very difficult people who do not (and never will) understand this situation.  I need prayers for a peaceful and forgiving heart... because Lord knows it's not easy.  You definitely find out a lot about people during the hardest times in life.  I'm trying out a new motto: "They can't hurt you unless you let them." But I'm so thankful for the people in my life who ARE understanding, supportive, and sincere.  And I'm sorry for slacking on the updates... it might be this way for a few more weeks while I get my life together but please bear with me.  

Oh and yesterday my little sweetpea turned 20 months!!  I can't believe it.  I found out Tripp was not supposed to live to be a year old when he was about 2 months.  So what a blessing it is that I've been able to spend 20 months with him.  He is my favorite person in the whole entire world.  I live and breathe for him... I hurt when he hurts and I smile when he smiles.  There are so many emotions that I'm dealing with daily.  I'm so sad for the cross that he is having to bear, but so grateful for all the lessons he has taught me about life and unconditional love. 
 Mommy loves you, little man. 


And I know you've all been waiting, so here are a few videos from last week... When it looks like he is "waving"- don't be fooled-- he is totally saying, "Get out of my face," "No," or "Leave me alone."  
Man, I love this kid.






Love, 
Photobucket

40 comments:

  1. My daughter is 13, has RDEB, and has been on Methadone for about 3 years. For the first week I think she slept 20 hours a day, but her body adjusted and the sleepy affect wore off a good bit. So don't worry if he seems too sedated at first, that will level out after a few days.

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  2. Love all the videos!!! And as for the people that are tough to deal with, I hope you always remember that there are far more people on your side.

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  3. Courtney, he is so beautiful. You guys are definitely in my prayers every night and everyday.

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  4. Those vidoes made my day. I am so sorry for you and Tripp's pain. My family will continue to pray for you everyday. You are in my thoughts.

    Wendi, Bennett & Finn Luke

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  5. Lane and I have been reading your blog and following Tripp's journey for about a year now, ever since your mom ran into Lane at the store and gave him a card with your blog site. Your strength continues to amaze me. I pray God gives you even more strength as you go through these tough times. And of course, we pray for your little man all the time, and we're so glad to see him having a few good days lately. Thanks for posting some videos; he's so cute!

    Lane and Brynn Thompson

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  6. I love your little man! he just brings so much joy to my life to see everything he does. And it does break my heart to read how much he endures. I am sending you prayers for him and you as well for god to give you strength. As for the ones giving you such a hard time,only you know what you face with everyday. May god soften their hearts to try and understand your situation. We love you guys!

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  7. Courtney...it is amazing how well he communicates with you!! You focus on the blessing of Tripp not the negatives that may go on around you!! It breaks my heart to think ANYONE could be showing you anything but kindness and love. I am praying for you everyday~ and your "rotten" boy too!! Hugs~

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  8. He is full of sass, isn't he? I love it. He definitely gets his point across, in no uncertain terms. Aubrey is obsessed with watching these videos! She says baby and claps and claps. She particularly loves the one where he is shoving your mom off the couch.

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  9. Courtney, I found your blog while searching google for mine. Your little man has completely stolen my heart. He is an absolute miracle! I have added you all to my prayer list. Thank you so much for sharing him with us. :-)

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  10. Courtney,
    I love the videos of Tripp. He reminds me so much of Daylon! I can't wait until our boys meet! :) I hope that things start to turn around in your life. I know how crazy and upside down things can get trying to raise these sweet EB kids and if you ever need to talk, PLEASE call! I love chatting with you! You, Tripp and your sweet family are always in my prayers! love you! Jenn

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  11. Such sweet little videos...he sure is a little stinker!! Happy to hear that he had some good days and I pray YOUR days get better too. The last think you should have to deal with is folks who don't get it, or choose not to get it. Keep strong!!

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  12. Thank you so much for the videos I have been patiently waiting !! Oh gosh its soo good to see him playing. My daughter just turned 20 months on May 1st (she was due on May 14th) and she watched the videos with me. She was waving to Tripp and clapping with him and then blew him a kiss ! He is such a blessing and I am so thankful that I came across your blog. I pray he has more good days and I cannot wait for more updates and videos :) I cannot thank you enough for sharing your little miracle with us !

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  13. Thank you Courtney! I am one of your fans that usually reads and prays but not sure I have ever commented. I am so happy to hear and SEE your precious boy in action. You tender my heart with your love for your son. I will pray for you both and cannot imagine why in the world anyone does anything to make your life harder than is it has to be already. I hope that you are encouraged to know you are admired from afar. Love from South Texas, Sharon in Corpus Christi

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  14. I have only read your blog a few times. I am a visitor from Jonah's page! I just read your last post and want to tell you that, "hurt people hurt people." Those that hurt you are hurting themselves and need our prayers more then anyone else. We have to show them mercy and grace and forgiveness. As hard as that is it is what Jesus would do! I will be praying for you and for Tripp! I could never begin to imagine the pain that you all endure on a daily basis. Just remember, "There may be pain in the night, but Joy comes in the morning!" Lots of Love, Sarah!

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  15. Courtney,

    I've been following your blog for months now, I adore your sweet Tripp. My niece, Lucy was 9 mos old when she lost her fight to EB. I am always SO overjoyed to see sweet peas like Tripp beating the odds, which I know he will continue to do (he has far too much spunk and fight not to, right?!). My heart aches for the pain you endure on a daily basis and it aches even more to think that there are people out there judging and being hurtful to you. You and Tripp will continue to be in my prayers, daily. Is there anything else that you need or I can do besides prayer? Love and understanging from Illinois, Molly

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  16. Who could NOT love this kid! He is such a cutie and I want to hug him everytime I read your blog! I'm glad he's had some "good" days (knowing what you mean there) - but am praying that he will have "GREAT" days. It breaks my heart that he can't really get his eyes open and that he struggles to breathe. I am AMAZED at his bravery!! And yours - you are a terrific mommy, and don't let ANYONE tell you otherwise. Praying that God will give you strength and courage.

    Joshua 1:9 is my 4-year old's favorite verse: "Have I not commanded you? Be strong and courageous. Do not be terrified, do not be discouraged, for the Lord your God will be with you wherever you go." That is my prayer for you and Randy and Tripp.

    You are loved down here in TX!
    Laura

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  17. I pray for you and Tripp, every night. I just love watching him play, he is so sweet. You are a wonderful mother and Tripp should be your only priority. I people don't understand that, you really don't need them in your life.

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  18. He is just the sweetest little thing!! Watching his videos always puts a huge smile on my face : )

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  19. Those videos are so precious!!! I love the way he makes sure to get his point across!!! He sure is a handsome little man:)

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  20. Thank you for the update but don't worry about us! Just enjoy that sweet little man. He is in my prayers daily.

    god bless- Kat
    www.momofmany.com

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  21. You are such a good mom. You can see the strong love you have for your little boy. I love watching the videos you post... it really shows your love for him. You can hear it in your voice. =) I'm praying for you and your special little boy!
    ~Barbara

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  22. Courtney, Thank you first of all, for taking the time to post your thoughts, stories and videos of your journey with Tripp. I pray for you and Tripp everyday. I'm so thankful for the good days you have together... To those out there who do not and will never understand, I say this:

    Our prime purpose in this life is to help others. And if you can't help them, at least don't hurt them.

    Courtney, you have one of the kindest, most forgiving hearts I know and your doing a great job with Tripp. I love watching the videos and and I can hear in your voice just how much love you have for him. I can see it in your eyes in the photos of the two of you... I pray for many more blessings for you and Tripp and may he have more good days ahead.
    Love ya girl, Pat

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  23. Hi Courtney: Thank you so much for the videos. I can't believe how good Tripp is looking. When I look at him, I am speechless and thrilled that he is doing so well.
    Praying for you guys every single day. Hoping your days will improve too. Love you guys. Love and Hugs Love Leah's Nana

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  24. What a delightful boy. I keep him and you in my prayers.

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  25. Your strength, positivity, love, understanding and patience in the face of all you have to deal with on a day to day basis is absolutely inspirational and heartwarming. My heart goes out to you and your family, and most especially to Tripp. May God keep him safe and well for a long time to come.

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  26. praying for your little family. you are an AMAZING woman and Mommy! Tripp is often in my thoughts and prayers...as are you. because I know you need strength too:)

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  27. It is truly hard to believe that you have people who are down on you - actually no it isn't, it does take all types to make the world go around.

    I have a children's clothing in Sydney (please let me know if there is anything you need, I am coming to America next week and would take me two seconds to post). Anyway.... my shop had been open for 6 weeks when some people smashed in our front door in the middle of the night and stole $60,000 worth of stock in 9 minutes. I was shattered but I came to realise God had put in front of me people that were desperately in need of prayer and I cannot tell you how much it helped (and took away my anger) to pray for these people.

    I know the two situations are nothing alike but it does give you (and us) the opportunity to pray for understanding and compassion in their hearts.

    I am quite serious about any clothes you might need for your wee boy. I stock a label called Purebaby (Australian), it is incredibly soft but does have seams - I'm not sure what Tripps requirements are.

    This is their website http://purebaby.com.au/

    I cannot tell you how pleased I would be to be actually able to Do something for you.

    Kind regards Bec xx

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  28. My thoughts and prayers are with you all. I hope he continues to feel better. Take care of yourself.
    Love,
    Sabrina

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  29. I absolutely love these videos Courtney! Tripp is so blessed to have you for a mother, so do not let others bring you down or cause you any extra grief! And you are extra blessed to have your own Angel, Tripp, because the amount of smiles, love, and self realization that he brings to your life is by far more than anyone can possibly realize! Hold each other in these difficult times, I will continue to pray for both of you! Lots of Love!

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  30. Tripp is such a cute little boy! I pray for Tripp and all the other EB children and families that suffer right along with them. You are an amazing mom and it is so evident how much you love your son. God bless both of you!

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  31. the video of him waving back and forth killlls me. hes ridiculous! love it.

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  32. These videos remind me so much of my own daughter, they certainly get their points across even without words :)
    Prayer for Tripp's pain management and for all the "good" days to come. \o/

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  33. OH honey I am so glad Tripp's having some days where the can throw down his toddler attitude and just be a little stinker! I think about him every single day, like he was one of my own. I wish more moments of just plain, boring, "real life" for you every day!

    As exhausted or frustrated as I sometimes can become stuck at home in this blustery winter with 2 under 2 I often think about you and it brings me up fast. I marvel at your ability to not only endure, but enJOY and have an attitude of gratitude. It is such an inspiration to me in my most difficult moments. If we switched roles, even for a few hours, I think I would be a better person for the rest of my life.

    I know how unbearable it is when people don't understand. I had a feeling you'd have some of that although you don't mention it a lot. I think we all "get it" from those kind of people at our weakest moments it seems! Anyone who's been through "something" in the struggling department has learned that lesson the hard way. It's hard; adding insult to injury at times. But I LOVE the previous comment:

    "hurt people hurt people." Those that hurt you are hurting themselves and need our prayers more then anyone else. We have to show them mercy and grace and forgiveness. As hard as that is it is what Jesus would do!

    I could not agree more. Don't let their words, lack of understanding, or ignorance get to you. That is much easier said than done. I hope that the power of all of those hundreds and thousands of people who are behind you with 100% understanding, faith, love, and support will outshine any of the gloom brought on by others.

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  34. He is so precious!! We pray for Tripp always!

    Hey, what happened with little Anton? Did he find a family?

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  35. You & your little man just warm my heart. Thank you for letting Tripp be part of my life.

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  36. Hi Courtney,
    Just a reminder that though you are busy beyond what most of us can fathom you are still on our hearts and in our prayers. Is it wrong for me to ask if Randy is a part of helping with Tripp? I am sorry if that is out of line, it's just that I'm trying to get the whole picture and maybe he's so busy earning a living for all the expenses that he can't be hands on. I see Randy & Courtney in the blog name yet it's hard to tell if he's still in your life. Again, I am sorry if that's too personal! Can't believe I've become a blog groupie but Tripp is just too much, love your little guy.

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  37. Have you in my thoughts praying for strenght and peace to just enjoy him as much as you can!

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  38. When my boys ages 8 and 10 heard your videos playing they both ran in here to watch. They love seeing Tripp sign and think he is so smart. He is a precious boy and we love to see him playing.

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  39. I've been reading your blog every now and then. I first found it from Jonah's blog. It just breaks my heart to read your words knowing that I'm not understand even half the struggles you go through everyday. At the same time the videos show just how much love and happiness you've brought to each others lives. Tripp is such a gift! The video of him stretching with Papa is just priceless! God Bless!

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  40. Hi Courtney...I am a 35 year old woman in New Orleans, LA. I thought I was the only one in LA. If you would like to contact me, we can start with e-mail....srdelavallade@yahoo.com. I would be more than willing to be a support system for you! I am sure you have many questions, and few answers. Being an adult now, I have realized that many physicians do not know anything about this skin disorder. I have Dominant Dystrophic EB. I have scarring, thick nails, blisters, skin tears, marks. I've had purple blisters in the palms of my hand, and on my feet. I am here to let you know there is hope, and I am here!

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