Thursday, August 4, 2011

Random thoughts and videos...

This will be a pretty random post, because I have a few things to write about and they are all kind of unrelated.  But I haven't blogged "just because" in a while, so I figured it's overdue.  Even though it is 11:00 at night and it would really behoove me (my nursing instructor will be so proud) to get some sleep- since that hasn't been happening too often.  O well, I figure one day I'll be able to sleep.  It's overrated, anyway. 

So, I know it's still far away, but I've been trying to come up with some ideas of what I can do for EB Awareness Week.  It's not until the end of October (the 25th-31st)- but I want to do something special.  Something that really brings attention to these babies who endure so much pain every minute of their lives.  I was staring at my little man today (like I do most every day) and just thinking about HOW much pain he is really in.  It's unfathomable.  And not just the pain- but that fact that he has lost his eyesight, he can't speak, can't eat, has 20 teeth that he can't brush, etc, etc, etc... I could go on and on.  
I'll say it again- these children deserve a voice.  And just because this disease is SO rare, doesn't mean that it shouldn't be well-known.  I honestly think it's the most cruel disease that I've ever heard of. 
So, as always, I want your input, thoughts, ideas, suggestions on what I should do for this week.  That way I'll have plenty of time to work up a great week of "EB Awareness."  It's going to be all about what YOU guys want to know and learn- so please, if you have any ideas, leave them in a comment or e-mail!

So I want to give credit where credit is due, and I can tell you that my sweet "saint of a Momma" doesn't get enough credit.  She has completely picked up the slack and has been by my side, helping me to raise my son 24/7.  She has never complained once about her life being flipped upside down.  It is very safe to say that neither Tripp nor myself would have survived these past 2 years if it weren't for my mom.  The main words that I hear daily from her mouth are "what can I do to help you?"  And yes, I realize that she would not have it any other way than me to be here where I have the help that I need... but it's still a sacrifice for her.  She's already raised her children- I'm sure she didn't plan on raising mine, too.  And also for my sweet Daddy who never complains when I steal his wife day and night, or when nothing is cooked for dinner, or his clothes didn't make it to the washer because we were washing 100 batches of Tripp's blankets...  I just feel like these sacrifices that my parents have made for Tripp and me might sometimes get overlooked, especially by me.  So I want to acknowledge them.  And I'll probably get a "why in the world did you put that in your blog?" from both of them... but I don't care.  They deserve for everyone to know what they are doing for us.  I hope they both know that I think they are the best parents in the enitre world :)

On to the next... There has been a good number of people asking me if I know about the bone marrow transplants going on in Minnesota.  I definitely do.  I have followed many of the children's stories who have gone through the transplant.  I know this is a difficult thing to understand if you aren't familiar with EB.  Most of the transplants that are being done are on the children with Dystrophic EB.  Tripp has Junctional EB.  The majority of the children that do well with the transplant are usually older children.  The children that I have watched through the transplants were under the age of 2, and the risks far outweigh the outcome. Tripp is not at a point where he would even be healthy enough to go through with the transplant.  It is a very brutal process.  I know that the brilliant and amazing doctors there in Minnesota are working hard to perfect these transplants and to help these kids.  And maybe one day this will be in our future.  But it's not today.  

And last but not least, I was looking through the videos on my phone and found some that I had taken within the past few months, but had never posted.  They are pretty short, but made me smile.  I hope they make you smile, too!  
I never realized how much I loved watching him stand to play until now that he doesn't play anymore :(

















Love,
Photobucket

63 comments:

  1. Last year I think you did a Q and A for eb awareness week. That was interesting. I have a question about Tripp sleeping. Does he still sleep in a bed next to you or do you hold him in the rocker at night? Does he sleep soundly or does he wake us and/or fuss a lot. Praying for you.

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  2. Those videos were precious. I just love that boy. He has the cutest personality ever. You are adorable too. You guys are in my prayers. So glad he is doing better. Looking forward to the next update.

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  3. Every video here is a precious moment with Tripp. I must admit the very first one was my favorite. When he shows you "how much" he loves you. Tears in my eyes. All it takes is a few minutes with Tripp to bring me back to reality and how precious life truly is...
    He is an incredible child Courtney, as you are an incredible mommy. Love you guys!!

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  4. He loves you that (BIG~arms wide) much! Adorable! Lucky Momma~

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  5. What a sweet boy. I love your blog and am praying for your little guy.

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  6. Prayers for you and your sweet son. Question from a new follower of your blog... Have you ever heard of Ozone Chemotherapy? My niece has chronic Lyme disease and her skin peels off of her feet. Her doctor (Dr. Burnui) in Nashville, has suggested this therapy for her. Could it help your angel? Sorry to offer something when I know you have heard it ALL......

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  7. He is amazing. So smart 2 b so small. I just loved the videos. He looked so happy in them and seems to love music. Very quardinated and attentive. You must b so proud of him. When my babies were small they loved the bible book short stories. I bet he would as well. I know u r having 2 keep him sedated all the time now. Are things starting 2 look up. Praying he Will b able 2 enjoy those drums again real soon? I am praying 4 his healing and being able 2 enjoy life again. You family has really touched my families heart and at night we pray 4 ur son with our children. You have been given a wonderful gift from god. A great family you appreciate and a ANGEL from heaven above. Thank u so much 4 sharing ur story, faith, and your baby! Keep us updated I check ur page everyday. Watch and seeing God's miracle! He has touched so my life's in so many ways including mine. God Bless and great going mom. I will pray 4 u a little more sleep as well. :-)

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  8. I just wanted to say that your tribute to your parents brought tears to my eyes. Your blogs always stir my emotions and you are so wonderfully expression that you help lead your readers straight to the core of what it is you wish to share and convey. My friends and I have been praying for your son and your family from all of our introductions to you in various ways... you are a treasure in the world of EB... you bring an awareness that is clearly very much needed. Our prayers for your family will not cease.

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  9. He loves you THAT MUCH! Do you guys have any idea how many people love and are praying for you THAT much?!? It doesn't sound like things are improving , yet your strength remains. Your family is an inspiration to people around the globe. If Tripp is having a good day any time soon, please continue to post pics and video of that amazing angel, on loan from God. Many, many prayers and hugs!

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  10. Oh my he is so beautiful Courtney! Just watching him play the drums is so cute. I love that he is a little drummer boy! I hope he will be feeling better soon so that he can start making music again. Lots of love to you, Tripp and all of your family. As always you and Tripp are in my prayers daily.
    Love,
    Laura Valetutto
    Bergisch Gladbach, Germany

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  11. I am a new reader, I found your blog from the Dear Baby blog last week. I just wanted to tell you how amazing you are and how beautiful little Tripp is. I literally think about him all day and pray for him and you and your wonderful parents. You can see the hand of God on your family, because it is only by the grace of God that y'all can endure what you do. I have a baby girl that is a little younger than Tripp and everytime I kiss her, I try to imagine what it would be like if she were in the agonizing pain that Tripp is in. There are no words. I live in Lafayette and love to hear you talking to Tripp on the videos, that is how we talk to our babies : ) I had actually heard about EB years ago on a TLC documentary about a young boy from England with this horrible disease. I have never forgotten. Anyway, this comment is all over the place. I just wanted to say that you have someone thinking about you and praying for you and you inspire me everyday to appreciate the blessings I have.

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  12. He really has good rhythm, doesn't he?!

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  13. Courtney - I wish there were a way that I could speak to you to tell you how much you and your angel son melt my heart.... I check on your status's daily and say a prayer for the both of you each day. You are stronger than you can even imagine that you are and your sweet angel boy is amazing beyond belief and god is working miracles through you both! I have NEVER been so touched by people whom I have never even met but I feel so close to you being a mother of 4 myself. I wish there were more I could do to let you know how much you and Tripp mean to so many people. You are both SIMPLY AMAZING and Angels from the heavens and God is with you both every day and I will continue to pray for you both every day.
    Very Sincerely and with heartfelt emotion
    Em.

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  14. Courtney, I have been following your blog for the past few weeks and I just want you to know (although I'm sure you hear it all the time) how amazing you and your son are. As a mom to a 4 month old little boy, I can't imagine how your heart must break to watch Tripp as he struggles through his pain. He is a fantastic little guy and that precious smile and spunky attitude make me smile with every video and photo. You have done (and continue to do) such a good job with Tripp and he is blessed to have you as his mama. Your love for one another blesses my heart and inspires me to be the best mom that I can be to my little ones. Your story has made me realize that healthy children are gifts not guarantees and I thank you for reminding me of that. Thank you for sharing Tripp with all of us and keep loving on that little fella'. God Bless You!

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  15. Ran across your blog yesterday, and immediately started praying for you and your family and ofcourse Tripp. I wanted to let you know that I am blogging of Tripp now, asking those I know to pray as well. I hope this is ok, and if it is not - just let me know and I will take it down. Our blog: www.anextraleaf.blogspot.com
    Praying for you and Tripp ....
    The Browning Family

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  16. I hope and pray that Tripp gets back to playing and making his music again real soon. It brings joy to my heart to see him playing his instruments and smiling. What an amazing sight he is! We love you Tripp!

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  17. I loved watching these videos!
    I hate that this disease has such control of your precious son's life.
    I think of you all often, even though I don't even know y'all.
    Tripp IS a sweet miracle. He has definitely touched my heart.
    I will continue to pray that his pain will be less & his smiles even bigger. :)

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  18. I love Baby Tripp! He is such an inspiration to me. Today I let my 3 and 5 year old watch the videos with me. Now they know the Tripp we pray for each day. Hug your sweet boy for us!

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  19. Oh Gosh! So Precious! Thank You Lord for helping Tripp to stand again, to be free from Eb! Thank you Courtney for posting these videos - helps me pray earnestly and fervently for your sweet baby!

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  20. This sweet precious child has my HEART!!! I am not sure how he has done that via blog...lol but he has!!!
    You both are in my thoughts and prayers each an every day!!!
    Sunnie in NC

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  21. Courtney, I am a new reader of your blog as well and I would like to tell you that I will be on my hands and knees praying and I have also shared your blog with my family and friends. You inspire me to always love on my little girl. We are sisters in Christ and I am grateful that I found your blog. Tripp is amazing and very smart! I know he is the light of your life. Keep Believing, Keep Trusting, Keep Praying...

    Love & Praying,
    Melanie

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  22. God Bless you and Tripp!! I'm praying that the little man starts getting better so you can see him stand and play again!

    You're both in my heart and my prayers every day!

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  23. Your passion for bringing awareness to EB is so beautiful. I wish there was something to do about EVERY rare disease so that everyone could magically be aware. It is such a struggle. Your strength is inspiring!

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  24. Precious videos! I just love to watch him play. Brings such a smile to my face. Love it!! Still praying for you and your baby!

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  25. Courtney, I don't post on blogs often. Nor do I post on blogs of people I don't know. I couldn't let life pass by without me telling you how inspirational both you and Tripp are! Your journey has touched, not only me, but my family. We pray for you both every day and I hope that Tripp continues to improve.
    We will continue to pray for you.

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  26. Thanks for sharing those awesome videos!! I loved seeing him show how much he loves you:) You are all amazing and so inspirational. Prayers every day for all of you.

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  27. Prayers for you and your sweet drumming boy!!! Oh what a treasure those videos are.

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  28. Hi Courtney-

    Please kiss and hug that sweet Tripp for me. Hugs to you and your parents, too. We're praying and praying!!

    I think another Q&A would be good - but maybe you could also highlight statistics about EB, and also some of the things that the doctors in Minnesota are doing. (In your spare time, of course!) :)

    Please know that so many of us love you and Tripp and are praying for you. Hope he is not in too much pain this week, and that the virus he had is out of his system!!

    Love from TX,
    Laura

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  29. I heard about Tripp from the Browning family and have added him to our family's prayer list. I first heard about EB through Reece's Rainbow last year... many prayers for you and your family as you care for your precious gift from God. Hugs, Grace

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  30. These videos are fabulous... Tripp is AMAZING!

    FOR EB awareness week maybe asking your facebook friends/blog readers to post something in their facebook status about EB to bring more awareness.

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  31. You and your son are some of the most beautiful and inspirational people I know. Praying for Tripp always. Thank you for bringing EB to light for people like me who would have never known it exists.

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  32. I am so glad you parents are there to help you. What awesome mom and Dad you have! and what and awesome mom you are to Tripp! I loved the videos of Tripp playing the drums! He has musical talent for sure!

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  33. I'd love to wear a "Praying for Tripp" shirt during EB awareness week. (The one with his beautiful little hands clasps together so sweet.) I saw them on TV coverage of the prayer rally. Is there website where those can still be purchased?
    Continued prayers for Tripp, you, and your parents:)

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  34. EB awareness week is something we will be celebrating and encouraging people to learn more about this year. We would like any ideas you have of how we can offer support to you and Tripp... (by purchasing and wearing a praying for Tripp t-shirt, or something like that.) We share your inspiring story with every one we know and will continue to inform people and be inspired by you! you are a beautiful woman and mother! we love you and are always praying for you and Tripp! please let us know and keep us updated on anything we can do to help, and of ways to support you during EB week!

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  35. Hey Courtney, right on for the love sent out to your amazing parents. They are just wonderful. We (Lonni and Jay Mooreland, Ang and I - together with our parent organization, Children's Cancer Research Fund) have been working pretty hard these past few months to organize Pioneering Unique Cures for Kids (PUCK) into a great resource for people looking for info on what the docs in MN are up to these days. We'd be happy to contribute an update for your readers whenever you'd like it. Things are really exciting right now up there ... night and day different from last summer when we were there! Let me know how we can support you... just say the word! Much love, the Ringgolds

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  36. Tripp videos always make me smile!! He has such a beautiful spirit!!

    Have to tell you that shortly after reading your previous post about the cold sore virus, one popped up on my lip. Call it a sympathy sore or probably more of a reality check, I don't care. Point is I was whining about how it hurt and was bothering me... and then I remembered Tripp, and how he has been SO BRAVE in dealing with so much worse. So I sucked it up, shut up, and was thankful I was only dealing with one.... unlike Tripp the Trooper who dealt with how many???

    Your boy is truly a miracle. But then, I think you knew that already. :) Thank you for sharing him with us all!

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  37. Tripp has a special place in my heart as well. I've been praying for him every day.

    Tripp needs to jam with Justin Bieber! How cool would that be?

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  38. Courtney, You don't know me but I heard about your blog on a WTE mommy board. I stayed up until the wee hours of the morning both yesterday and today reading about Tripp. Let me just say he is amazing! His sweet smile melted my heart and it breaks knowing all that he's suffered through. Yesterday and today, he's been all I thought about and I prayed for him each time I saw his sweet little face. He's such a brave, smart little guy. You are a special momma and will be in my prayers that God give you the strength to continue to provide the very best for that amazing little guy. God Bless you and keep you. I'm also an RN and have never heard of Tripp's condition. My little guy's first birthday is Oct. 25 so I will def. Remember EB week. You, your family and precious Tripp are in my prayers.

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  39. Courtney, I'm sure that you have gotten to know quite a few families that have children with EB. Why don't you have them write up their stories and you can feature one everyday on your blog during EB Awareness week?

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  40. Hey there sweet Courtney! My name is Lizzy and I found your post via a link from dearbaby.com sometime last week. I've read pretty far back into your blog and now know what EB is. Before your story, I'd never heard of it. You are a strong, amazing momma and Tripp sure is blessed to have you there to love him and care for him so deeply! I would like to help you with EB Awareness Week. I have a blog called www.lizzyfitness.com and I am thinking it would be a great way to get the word out if you wanted to write a guest post on my blog concerning EB. If you'd like to do something like that, just let me know! You can contact me at lizzy [at] lizzyfitness.com anytime :)
    Blessings,
    Lizzy

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  41. Tripp's ear for music and his rhythm are amazing! His smile just radiates! He loves you sooo much, this is obvious! I love how well you two can communicate, you're the perfect pair : )

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  42. Be still my momma heart... that video of Tripp showing you how much he loves you makes me heart pitter patter. What a precious child!! Blessings and prayers...

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  43. I love the Video's they make me smile!!! he is adorable....

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  44. You are an amazing mother with strength that only one can imagine!! Tripp is so very lucky to have you as his mother! We are and will continue to pray for Tripp and your family!

    Love the Lehmanns
    Farmington Mn

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  45. It is amazing how someone so little can be so strong.Your story and your son have touched the deepest part of my heart.You Randy your mom your dad and little Tripp are in my heart and thoughts.GOD BLESS YOU ALL!

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  46. I LOVE the "feet twirls" when he is excited!! That is one of the cutest things I have ever seen, my goodness. What a blessing to me tonight, thanks for sharing.

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  47. Courtney, I have followed your blog for a while now and am always stunned by your and Tripp's strength and courage and faith. For EB awareness week...maybe do a special post that encourages readers to share your blog on facebook? I have wanted to share your blog and amazing little Tripp for some time. The awareness week will be the perfect time to do that.

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  48. Courtney, I loved seeing the new videos that you posted, but I'm so heartbroken to know that you no longer have the opportunity to see him doing those things. Please know that our prayers for Tripp, you and your parents will NOT cease! God Bless..

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  49. Thank you for posting the videos, they sure did make my day! Along with everyone else my heart also aches for you not having days of seeing him play. As for your wonderful parents they deserve all the recognition your giving them on your blog. Your family is always in my prayers!

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  50. Courtney, your courage and strength are an inspiration. I feel so blessed to have been touched by Tripp...he has brought something to my life than I cannot describe. I think about y'all everyday and I thank God for every moment the world is graced with Tripp's being. You are both amazing and loved very much. Thank you for putting yourself and your precious nugget out there for all of us to love.

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  51. What a blessed mother you are! My tears fall for you having to watch his suffering without being able to take it away. But those moments of happiness are truly what we live for. You have such a kind, happy, loving baby boy (who is very talented I might add), and the videos made it real for us who cannot be there with you. The times he was fussing you shows he's just like any average, spoiled little boy, and its amazing to see how an angel in human form really does exists. I pray every day for you and your beautiful baby. He is slowly but surely changing our world every day that passes from his birth.

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  52. Dear Tripp,
    I just learned about you and your awesome Momma! I'm sorry you hurt so much. Oh my goodness. You are a little trooper and can even smile through it all. Really Tripp, you are a hero! I'm sending big prayers from Texas. Lot of love,
    Amy

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  53. These videos are precious!! Thank you for sharing. I'm praying for you and your sweet baby!

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  54. Wow...I just cannot seem to get you all out of my mind. These videos are precious and fill me with all kinds of emotions from joy to sadness. Tripp...you are so loved! I just finished reading Guess How Much I Love You to my babies and I have to say I cried through the whole thing. You have given the book a whole new meaning to me. I just picture you with your arms stretched out wide telling your momma how much you love her. We've decided to dedicate that book to you each night as part of our prayers. We all love you...THIS MUCH!

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  55. OH WOW, he made my day, my week, and quite possibly my year! What an amazing little man and such a fantastic Mommy too!

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  56. can i just say that the words im about to say will do nothing to even begin to describe how i truly feel but I wanted to let you know watching those videos of your son did something in me, he put a smile on my face as I watched the joy he had even through all he is going through. it really put things into perspective to me b/c i just lost my baby girl at 20 1/2 weeks along two months ago and I am thankful God used your little boy to get to me and give me a smile tonight. he is precious...so precious...more than i could ever say. what a gift, what a mighty plan that God must have for his life!

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  57. Courtney and Tripp,

    I LOVE these videos! Tripp, you are one smart little guy! You look like so much fun! You are one precious little miracle. Courtney you are an amazing mother and your strength amazes and inspires me. I will continue to pray for you all.

    Love,

    Bonnie

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  58. Thinking of you and little Tripp today, hope it
    was a good day for ya'll!

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  59. Hi! My name is Emily Ruth and I have been so touched by your blog and your sweet little guy. He's such a trooper! I'm a Scentsy consultant and would love to have a fundraiser for Tripp. If you're interested please let me know. My email address is wonderfulwax@live.com. Please know that I will be praying for Tripp and your family.

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  60. Hi

    I've followed both Bella and Daylon through the study. Wow, I have an appreciation for that process that I could not have otherwise. No day in the park. Serious, serious stuff.

    Kudos to your Mom and Dad! And Kudos to you! What a lucky little boy to have you all working as a team to make him as comfortable as possible.

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  61. What a wonderful child and you are an amazing mom. i am praying for you. until tonight i had never heard of the horrific disease. I looked at the pictures of your son and just winced in pain for him. His poor little bum...I can't imagine the pain you go through at bath time or how you sleep. I pray for your peace and comfort. God is with you.

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