Wednesday, July 20, 2011

I think he's known it all along...

I know I've been needing to update, but it's just been about finding the time to sit and gather my thoughts... which have been ALL over the place lately.  So where shall I start?  I think my last post (other than the poem) left off saying that little Tripp man was doing okay, and being a little fussy ham.  I know you all know that very gradually over these past 2 years, Tripp has only gotten worse.  And in the past few months, his play-time has gotten to be less and less.  But in the past week, he has pretty much spiraled down-hill and we just can't figure it out.  

At the beginning of last week, he started running fevers.  He always runs fevers, (he's constantly battling some type of infection) but these fevers were between 103.0-105.2, which he has NEVER run.  We (Dr. D and I) juggled around the possibility of the hospital, but had not made a decision yet.  We thought about the home health nurse trying to start the IV antibiotics at home, but then realized that this wouldn't be the best idea- considering that he probably would not leave it in and he would need the antibitotics around the clock.  SO, she waited until Tuesday night when his temperature dropped between 93.0-95.0 (which was really odd, but can be a possible sign of a blood infection) before she decideed to have him admitted.  

Now I will remind you that Tripp has not left this house since October of last year- at all.  That was the last time he had been admitted to the hospital.  He: 
1. Cannot go more than about 5 minutes without his humdified air on (and this machine cannot be plugged into the adapter in my car, it's too big). 
2.  Would never ever let us put him in his carseat for a 45 min drive- no way, no how.... air or no air.

SO- it was either:
1. Call an ambulance (which makes me nervous just typing it), or
2. Borrow a big RV from my dad's work where we could take Tripp's rocking chair with us.
AND #2 IT IS.


The ride there definitely went better than I would have expected.  Without that rocking chair, though, we would have been up a creek without a paddle:)  The ride was pretty bumpy... and on the way there Tripp was so nervous that he kept switching between my mom and me.  And being that we both get carsick even in the passenger seat of a car, we were both pretty nauseous by the time we got there.  

We went straight in to the ER, no wait... they checked us in and took us straight into a room.  Meanwhile (from the RV to the room- which was just about a total of 5 minutes)- Tripp was FREAKING out.  He was so scared and so confused.  And as soon as we got him into the room, the staff brought in a rocking chair, and he settled down quickly.  

I just cannot say enough about the staff at Ochsner on Jefferson.  Never once have we gone in and had any type of bad experience.  Dr. D always calls ahead and lets the ER doctor know we are coming, so the doctors and nurses are always more than accomodating to us.  They started the IV in his head.  We had to hold his little hands down while he was in the rocking chair and while he cried (but overall he was such an angel).  After we got the IV in and secured (with his special tape), he was SO good.  He would try to feel it and I would say, "That's just some tape, buddy." and he would put his hand down and leave it alone.  


He got his first doses of 2 types of IV antibiotics (and bloodwork drawn) and then they admitted us onto the Pediatric unit (which I can also never say ENOUGH good things about).  They all know us by name and treat us like royalty (really).  And the pediatric doctor on call that night was Dr. Fogarasi- whom we ADORE.  We didn't get in the room until about 3-4 the next morning and then after getting situated, cleaning the room, fixing his bed, cleaning him up, and then showering ourselves- we didn't get in bed until after 5 that morning.  And all of that time, Tripp left his IV in his poor little head.  And then, I'm assuming as soon as we finally fell asleep- he ripped it out.  Because when I woke up at 7 that morning, it was lying right next to his head:)  

So then there were decisions to be made.  Were we going to start a new IV to give him the rest of his antibiotics when he would probably just pull it out again?  Were we going to keep him in the hospital where is SO anxious and out of his comfort zone to treat him for something that would just come right back?  The pediatrician on call decided that she did not want us in the hospital.  She wanted us to be home in our environment, where Tripp would be comfortable.  The plan was to take him home on antibiotic injections (which is pretty much the only option left now that he is resistant to almost every oral antibiotic).




Dr. D decided that she wanted me to talk with the PICU doctor, Dr. Finger, while we were in the hospital.  She wanted him to give his opinon on where we should go from here.  So Dr. Finger came and spoke with my mom, dad, and me.  It was rough, I have to admit.  He (in a nutshell) said that he thinks that we are at the point where we are doing things TO him instead of FOR him.  He said that if we ever admitted Tripp into the PICU and wanted us to stick an IV in his head, or give him an antibiotic shots- that he would not do it.  He said that in his opinion, to inflict pain on him (such as shots and needles) just  trying to rid an infection that is going to come right back- is almost cruel.  He made it a point to ask me if I thought that he was getting worse- and of course I said yes.  Especially his skin.  
He didn't want us to make any decision right then and there, but just to think about what he said.  And honestly, everything he talked about is exactly what I've been feeling over the past few months.  When it's his time (whenever that may be), I've always said that I would keep him at home and keep him comfortable.  And doing anything that causes him MORE pain when we are trying to treat an infection that is going to come right back the second we are finished treating it... is not my idea of comfortable.  

So where are we now?  We are home, of course.  
And we are working on his comfort.  We have done a number of things in the past week.  And by we, I mean Dr. Defusco, Trea Landry (CVS), Don Fellows (Central Drugs), and I.  In the past week, we have  started 2 new pain medications and 2 new anxiety medications.  Baths have been, of course, worse than EVER.  There are absolutely no words to even begin to express bathtime.  I'll just leave it at that.  And now diaper changes are just as bad as bathtime, they just don't last as long.  Tripp has been getting an ungodly amount of pain medicine in the past few days.  And we still have not gotten him to the point where he is comfortable when you move him (or of course bathe him or change him).  Now don't take that the wrong way- for the past week, he has spent every day pretty much knocked out in the rocking chair, not even being able to say "more" or "yes."  But when we go to move him, sit him up, or switch positions- he starts trembling in pain.

Ready for just a little "good" news?  My sister is in town!!  She flew in last Sunday and is staying until next Tuesday.  I am so happy to have her here.  I really needed her.  So did my mom:) 
I'm trying not to even think about her having to fly back to North Dakota... that is not going to be a good day.  

I really do not know what I would do without Tripp's doctor and pharmacists.  Honestly, they are more like friends/family to us.  Even if I tried, I would never be able to thank them enough for what they are doing for Tripp.  They are working together 24/7, racking their brains, helping each other, seeking help from other healthcare professionals, and trying to figure out how to make my little man as comfortable as possible.  Dr. Defusco is coming to the house, calling me every day, and working so hard for Tripp WHILE she is juggling her other patients (it just seems to me like she wouldn't even have time for anyone else with the time she is putting in for Tripp).  I have the utmost respect for her for being the best doctor we could have ever hoped for.  And Trea Landry (Tripp's pharmacist at CVS) has been like family to us.  He and his wonderful wife (who is also a pharmacist) check on Tripp every day.  He drops off prescriptions to our house, and hardly ever comes without bringing us food or asking what else we need.  He has spent the last week also racking his brain trying to figure out how to make Tripp more comfortable.  He and Dr. Defusco both have been by the phone- 24/7 waiting to see if I need anything. 
I love them.  And feel so so blessed to have them in our lives. 

This was his bottom in the hospital a week ago- it is worse now, with more redness and drainage from his wounds.


I realize that this may be hard to look at, but I just want everyone to know that this is not even 1/4 of his pain.  His legs are covered in these same wounds, as well as his neck, face, hands, feet, etc.  The picture that I last posted of his little leg in my earlier post was the "good" side of his leg:(
This little saint is having to endure an unbelivable amount of pain- and since his pain and wounds have only gotten worse and not better in the past days/months/year... I think it is only fair to my little angel to finally do the best we can to make him as comfortable and pain-free as possible.  

Is this an easy decision?
NO WHERE CLOSE.  
Am I clinging to my faith and trust in God now, more than ever? 
YOU BET I AM.   

 I have known since Tripp was about 2-3 months old that I should expect to outlive him.  
And for 2 years, I have tried every day to prepare myself for the day that would happen, but pray and hope and trust in God that it never would.  I could not even begin to count or explain the amount of emotions that have gone through my body through these past years... wanting him to live and fight and then asking God to take his pain away in the next breath so that he wouldn't have to suffer anymore.  
And as many times as these emotions have felt- there is no way I could begin to explain what I am feeling at this point.  

Is this just another hill we have to climb and he's going to shake this and start to fuss us again?  
Or is this starting the events that I have dreaded and cried over for the past 2 years? 
I don't know, you don't know, the doctors don't know... only God knows.  
And I have accepted that with everything left in me.  
I have totally turned it over to Him.  
I realize that I was chosen to be Tripp's mother for his time here on Earth. 
And like both of the priests that I have talked to in the past two days have said- Tripp was chosen to carry this cross.  He is a disciple of Jesus and is truly a saint.  One priest stated that we should be praying TO Tripp instead of FOR him, because he is truly blessed by God and has a special place right next to Him in heaven.  I truly believe this in my heart.  

But of course, nothing in the world can ease the pain of watching your child suffer and knowing that "keeping him comfortable" is the first step in letting him go. 
My prayers now are for God to do His WILL- not MINE.  
My prayers are to the Blessed Mother Mary to give us comfort. 

GOD BLESS each and every one of you who have reached out to our family 
(thoughts, prayers, emails, food, phone calls, ETC). 
I am overwhelmed by the amount of lives that my little man has touched. 
I don't think Tripp is suprised, though... 
I think he's known it all along. 





Love,
Photobucket

388 comments:

  1. My heart hurts for you! I'm praying that God will provide strength and encouragement for you and your family and healing for Tripp, however He chooses. I can't imagine your pain, but I hope in our Lord and His love.

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  2. Xoxoxoxoxoxo. Still sending prayers! You are in my constant thoughts and prayers!

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  3. Praying for your boy, you, and your extended family ... God bless you for your trust and faith in Him ... may you feel His arms wrapping you in the peace and comfort only He can provide. A friend in Central Illinois

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  4. I have been following your blog ever since you posted about the Cannells (who are friends of mine). I have been touched by your words, and I'm joining in your prayer - may HIS WILL be done. I'm praying peace and comfort over all of you. Tripp is a fighter. He inspires me.

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  5. I'm praying so much.
    Tripp is all I could think about after I seen a friend's post on Facebook. Thanx for accepting my friend request. You are a wonderful mother Courtney. I'm praying so hard for all of you. Please Dear God wrap your loving arms around all of you. Watch over Tripp please. In his wonderful name I pray. Amen.

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  6. Courtney, I am a new follower of your blog (My very best friend's brother, sister and nephew have EB and they sent me your link) and your faith, courage and strength is truly inspiring and remarkable. You and your sweet, sweet boy have been in my thoughts and prayers for a couple weeks now. I too will pray that the Lord's will be done in this situation. Just know, Courtney, that so many people (that you don't even know) are praying for you and your family.

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  7. I am so incredibly sorry you (you,Tripp,your entire family) have to endure this. Honestly, I don't even know what words to say, other than just share with you that I am crying for you and for Tripp. In the past couple of weeks I have shared your story with my mom. Each day now she asks me how the baby is. When she says the baby, I know she means Tripp. I pray for comfort for Tripp and for Peace and Understanding for everyone around him. I know that Tripp always holds something in his hand. I think he's always been practicing so he'll be ready when Jesus extends his hand for Tripp to take hold of.

    Much love and prayer from Mid-MO

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  8. Dear Courtney, I too will PRAY TO TRIPP!!!

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  9. Courtney, my heart is breaking for you and for your sweet little angel, that he has to suffer so. I pray for his pain to ease so he can entertain us with his musical talents again :-) May Jesus bless and comfort him, you and your family during this trying time.

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  10. Sitting at my desk with tears streaming down my face. Courtney, you are such an inspiration. I can't imagine going through what you and Tripp are. You are an example of what unconditional love and faith are. I know this must have been a painful, heart wrenching decision for you but you are doing the right thing. You've put your faith in Him and he will not let you down. He will watch over Tripp for you until you can be with him again - this I believe with all my heart. Your little guy has touched so many lives that you, nor he, could ever have imagined. To be so young, and to have the faith that you do, is amazing. I will keep you and Tripp in my prayers.

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  11. My heart is broken for you all. Just wanted you to know that we are praying for peace and comfort for you all, from over here in Italy too.

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  12. Saying many prayers for you, your family and sweet Tripp. Especially for peace and grace. Much love and God bless from Kansas.

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  13. Courtney, I am at a loss as to what to say. My heart is breaking for you and for Tripp. Please know I am still praying for you two. ((((HUGZ))))

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  14. Praying daily for this little angel. Your strength is inspiring.

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  15. What a beautiful thing the priest said. How right he is as well. I pray that God wraps his arms around you and you continue to feel his strength and power.

    I am praying for you all.

    God Bless xxx

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  16. My heart goes out to you and your family. You will continue to be in my prayers, that your family is able to find peace and Tripp's pain is taken away. He's a precious baby and I can see by your words how blessed you are to have an angel such as Tripp in your life.
    Thank you for taking time out of your day to share him with us.

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  17. Courtney- I have been reading your blog for a very long time and this is the first time I have posted but I want you to know I think about you daily and pray for Tripp. I have an aunt who is suffering from MS and right now things are very bad and I remember saying to someone- I am praying, but I don't know what I am praying FOR. Her life is painful, just like Tripp's is. I pray that he finds comfort- however that may be. My heart is breaking for you and your family.

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  18. I've been reading your blog for awhile and praying. I will continue to pray for your sweet family.

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  19. Long time reader, first time commenting. You, Tripp, your family, are all in my prayers and thoughts throughout the day. Add one more to the many that are praying and thinking of you, sending you love and strength.

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  20. Courtney, Praying (and crying) for you and your darling "little man" Tripp.
    Love, Judy T.(Leah's Grandma), Bowie, MD

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  21. My heart aches for you Courtney. The decisions you are having to make just break my heart and are ones no parent should have to make. There are no words left, just tears flowing down my face. Much love and prayers to you and Tripp. You both amaze me.

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  22. Courtney,

    You don't know me from a hole in the wall, but I have been following you and Tripp and your incredible strength, courage, and faith and I just wanted to let you know that I am praying for you both. God truly could not have picked a better mommy for Tripp. You are an inspiration. Love and God Bless.

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  23. We don't know each other from Adam, but I have been following your blog for a while. I can't tell you how bad my heart hurts for you, and especially Tripp. I know the pain I feel for you is nowhere near the pain you feel for him. I know as a mother, if you could take his pain away and feel it for him, you would. I am praying for ya'll. For peace, strength and humbleness. Tripp is an amazing little boy, who has more strength than any of us put together. Your family is always on my mind.

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  24. I have never posted before but I have been "blog stalking" and praying for you and Tripp for over a year now. I just wanted to let you know of one more person praying and one more person who has been forever changed by your precious perfect little boy.

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  25. i do not know you, but my cousin knows your Mom...she had told me about your situation...then, a friend posted a link to this blog on fb. I am so, so sorry....praying for God's strength and wisdom for you all!!

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  26. My heart breaks reading this. I wish there was something...anything to make him better. Your truly amazing in all you do for him. <3 hugs

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  27. Tripp has been on my mind. What a special, special boy. Keeping you and precious Tripp in my prayers. <3

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  28. Courtney, we are sending you hugs and prayers. Tripp has changed my life, my thoughts, my attitude towards problems. We love him so so so much.

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  29. I pray that the Lord's grace, mercy, comfort and hope will be felt by Tripp, by you and by your entire family. I will pray specifically for pain relief for precious Tripp.

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  30. Sending prayers for you and Tripp. Your courage and strength inspire many.

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  31. Courtney, I am a nurse up in Vancouver, Canada, and am helping to look after a baby girl born with EB a year ago.
    I have been following your blog for months, I have learned so much from it, and have been so very moved by what you share. I thought that it was time for me to let you know how much my heart goes out to you and Tripp, and your mother. I love you all, and will be holding you close in my thoughts.

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  32. Courtney,
    You and Tripp continue to be an inspiration for me! I agree God chose YOU to be Tripp's mom and nobody else! The courage and strength you have showed continue to have me in awe. Thoughts and prayers are being sent your way!

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  33. Nancy (unregistered) wrote:

    I can't post on her blog.. I have a problem with hers and one more. Please post this for me.

    My thoughts and prayers are with you and your family. Holding you and Tripp in my heart.
    Nancy



    Thank you.. You know I can't even imagine her pain...

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  34. My heart is broken for you and Tripp. I can not even imagine how hard this is on his tiny sweet body. Praying for the Lord to take away all the pain and hurt, give Big guy some peace from the pain so that he may play and demand more of the Ducks. Praying for your heart mama. I am glad you have some great people in your lives that are there for you each and every step you take.

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  35. Courtney,
    The Crump family (Patrice's brother, sisters and inlaws) are all praying and have prayed for Tripp and your family. I hope that there is a peace for you, Tripp and your family as you care for your little guy. Much love to you!

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  36. My continued prayers for Tripp and your family <3 What a special and beautiful little boy! I pray most of all for his comfort. No child should have to endure what he faces daily. Somewhere there is a pain-free life just waiting for him- I know it!

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  37. Courtney,

    I have followed your blog and prayed daily for Tripp for over a year now, even though I don't know you in person. You are such an amazing mom and have such a stronger fighter for a son. Praying for sweet peace....for your whole family. The peace that can only come from our Lord, Jesus Christ. And praying for a break in pain for sweet Tripp.

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  38. Oh Courtney. Oh HONEY.
    I don't know what to say.
    Sweet, SWEET boy.
    Please, Lord, be with this family. Bring them comfort. Bring them peace. Be near to them, and fill their hearts with Your love. Allow us to help them share this burden of pain. Lift them up, bring this angel baby solace.
    Please, oh Lord, please.

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  39. I admire your faith in God during this. My son died 6 months ago at just 2 months old, and I am so mad that I can't even see straight. Not mad at God really, but my faith is so tested that I can't even pray. I'm so happy you are finding strength this way.

    You have an amazing bunch of people looking out for your little man. It's just wonderful.

    I am constantly thinking of you and Tripp. Your story has touched me. Much love and hugs to all of you.

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  40. I am praying for Tripp and for your family. What a sweet, sweet little boy and what an amazing mom you are.

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  41. Sweet sweet girl you are so strong. I only know of you through your wonderful blog. I truly think of you and your sweet angel baby allllll of the time. I made sure before I read this post I was in a nice quite spot so that I could take in every word you said. I pray that peace and comfort wraps around you, Tripp and your family. Thank you for sharing your story with us. Tripp has truly changed my life. Much love. Jen

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  42. Courtney... you are the bravest, most courageous woman and mother that I have ever encountered. Your strength and love for Tripp are the gold standard of what love should be. I am speechless that with all that you are going through, you still take the time to let all of us know how things are going. You are so kind and amazing to care about us too... unbelievable. Thank you, I, as I am sure many, have been checking throughout each day hoping to hear how Tripp was doing. You are in my prayers and my family holds Tripp in all our hearts ~ thank you for sharing him with all of us. We have all grown to love him too. I also thank God for giving you what wonderfu1 and supportive parents. You are all my inspiration. Sending Tripp so many blessings, prayers and tons of love.

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  43. Oh my word. I am a PA and have never seen wounds near as bad as that. I am so so sorry. I can not imagine seeing your baby in such pain. I will be praying his time here on earth is as pain free as possible and rejoice in knowing he will be completely healed when in heaven. What an amazing little boy and mom.

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  44. We're with you every step of the way, with prayers for whatever it is that Tripp and you need at this time.

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  45. I have tears streaming downn my face as I type. I am at a loss for words, but wanted to express to you what an impact you and your precious adorable Tripp have had on my famiily and I. You continue to be in our prayers. Thank you so much for taking the time to post. Sending hugs from California.

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  46. Sending many hugs and lots of prayers for peace and comfort for you and your lovely boy. You and Tripp are amazingly beautiful.

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  47. Keeping you all in my prayers. Tripp is truly a very strong and brave little boy. ((hugs))

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  48. I want to second all that Kelly said. I admire you, your strength, and your faith. I lost my daughter when I was 37 weeks pregnant. In a strange way I was relieved that I never had to see her suffer, but at the same time I never got to "meet" her since she was born still. In all of this my faith in God has not been strengthen. I wish it had, that's why I say I admire your faith.

    My thoughts and prayers are with you, your family, and especially Tripp. ((hugs))

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  49. Even tho I have never met you, you inspire me. Over the last 2yrs my faith has been tested, but I do not take anything for granted anymore. I am lucky to have the 2 special needs children I have. GOD bless your family. I don't live to far from you either.
    Jessica

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  50. I am just amazed at your composure and grace in this situation. I pray for you, your husband, and your beautiful angel.

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  51. I just lost a long comment somehow so I'll try to hit the high points... I've never believed in life at any cost. Many people do, so I try to be quiet and respectful. I think it takes courage to make the decision to make Tripp's comfort the primary goal of his treatment plan, and I thank God for giving you the courage, because our Little Man has suffered more than anyone should, and he's earned his comfort. I also believe that Tripp truly is a blessed child, and that his life has touched, and changed, and blessed many thousands of people and that He will sit at the right hand of God, and be exalted. When Heavenly Father is ready to take him home, He will, and Tripp will have served his earthly mission with flying colors. Please forgive me if this offends, but seeing his poor tortured body, I hope his comfort comes soon. And when it does, we'll shower you Courtney with all the love and support that we've given Tripp these past 2 years. We'll stand by you and hold you up when the loss feels too hard to take. Hang in there sweet girl. Sending prayers and love and strength for all of you. Love and hugs...Jan

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  52. Oh honey, i wish I could take some of his pain. It's unfair that little boy has to endure so much. I am praying for you and I wish I could wrap my arms around you all.

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  53. Praying for comfort for Tripp that the Lord only can provide- here in your loving arms, or in His loving arms. Prayers of peace for you and your family.

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  54. Courtney - you are an amazing woman and mother. I have followed Tripps's story through Patrice's blog. I wish and pray for comfort for Tripp and strength for you and your family. God bless you. Thank you for taking the time to write such wonderful words.

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  55. We have been following your story, and praying for you. Praying for you and Tripp now more than ever!

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  56. All my prayers and love to you and Tripp.

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  57. I pray the Lord Jesus may hold you both (and all his loved ones) in the palm of His hand, and comfort you close in His bosom as you both view firsthand the sorrow and pain of this earthly realm. That the promise of salvation through His shed blood, which is sufficient for all our sorrows and misery, bring you the peace and joy of the knowledge of heaven, which awaits, where there is no sorrow, or pain, or suffering, or tears. May the Holy Spirit hold you both gently in His hands as he brings you through this deep valley.

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  58. That sweet baby boy has touched a world of people with his little finger. He sure has touched my heart...as have you. You make me want to be a better mother every day. Tripp has taught me to enjoy the "little things" that I surely would have taken for granted. Your faith has touched me and taught me so much. May God wrap his arms around you both and bring you both comfort and peace. What a wondrous world awaits that sweet angel!

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  59. I wish I could just hug you because I have no words. I will keep praying for Tripp and his family.

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  60. This is so heartbreaking. I am speechless. But I am full of prayers for you and your sweet boy. My your entire family feel God's love and comfort today and always. Praying for comfort for that sweet baby!

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  61. I have been following your blog for quite awhile, but never posted before.

    What a strong little boy who have who has surely fought harder and longer than so many of us would be able to.

    There are so many people out here who are holding Tripp and your family in there hearts.

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  62. Meredith (unregistered) wrote:

    I tried to post this on her blog and couldn't, could you please post it when you can?

    I'm not sure if I've ever posted before though I have followed Tripp's story. I'm in tears reading this, and pray that he is comfortable soon, and that you can somehow find comfort in his comfort. He is such a warrior, such a brave brave boy, and he and you both are in my thoughts.

    Meredith

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  63. Sending Love and Prayers for you and your Family. God Bless all of you!! Just remember you have people all over the US praying for your family!

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  64. My heart goes out to you. Prayers with you always ...you and Tripp are so lucky to have each other

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  65. praying for tripp and for you, in tears tonight

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  66. My heart is so heavy for Tripp and your family. I could not ever imagine what you all are going through. No one should ever have to. I pray for peace and comfort for you all. If you get a chance listen to this song "In the Garden" by Anne Muray. Allen Jackson sings it too. My mother loved this song and I just listened to it the other day when I had a moment of missing her. I truely believe you, Tripp, and your family are in the Garden. Tripp truely has touched my heart and I admire your strenght and ability to be able to do whay you do and your family.

    Praying for comfort:
    Shalanda

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  67. Another reader. Another reader with tears. Another reader here praying for you. Praying really hard for peace to fill Tripp's heart. And yours.

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  68. Prayers for you, Courtney, from across the lake. May your sweet angel, Tripp, not suffer, and may God give you both strength and comfort. You're both in my heart tonight.

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  69. Courtney,

    Thoughts & prayers, just as always. I'm so sorry that things aren't looking up as they were, but what was said sounds just right- admiring Tripp and praying to him for all of his strength and might that God has filled him with. God has filled you with the same. No matter what, he'll always be close as ever to your heart. Love you, Tripp, & the family so much!!!

    Brielle

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  70. Oh my, my heart just breaks completely for his pain. It's so truly wrong. NO sweet child should have to endure this...so awful and yet he's been such a joy for your family. I've followed you through sweet little Jonut and take part in the auction to fight EB. I pray we find a cure for this awful condition in my lifetime. Tripp is such an angel and you are amazing...your strength and will to fight for that sweet boy truly shows. I'm praying so hard that his condition improves. He will be in my thoughts daily. I'll keep checking in and sending you hugs for even more strength.

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  71. Oh Courtney, as hard as it is I believe you are doing the right thing in how you are caring for Tripp. (Not that my opinion should count for anything but I just know that we moms can be so hard on ourselves and second guess). Your instincts about how to care for him have always been right so continue to trust in God and in your feelings as his mom. We are thinking about you guys and praying for you guys constantly. You all were so sweet to us when we we going through a difficult time and I want you to know that we are here for you for ANYTHING and ANYTIME....ALWAYS.

    Much Love,

    Angelique

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  72. I don't have adequate words. Just praying so hard. I love your sweet boy so much; I hope that is okay. his story and your story have touched my heart so very much.

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  73. Praying for you both! May God bless you and keep you!

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  74. Tripp's story is amazing. I can't imagine the pain you are in watching your child suffer. I wish "I'm sorry" was able to help more than letting you know I think about you and your fight often.

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  75. My heart is breaking for you as tears are running down my face. No one can fathom the love of a mother for her child, especially when that love hurts. I'm continuing to lift up you and Tripp to the Father in prayer; may His will be done. Father, please grant peace and comfort to this family, and thank you for the gift of Tripp to this world...he is such a blessing to so many.
    I've been following Tripp for over a year now; as a native of Louisiana myself, I've been especially touched by your story. Just know that you have the prayers of many going up in your behalf, and for Tripp. May God grant you peace during this time...

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  76. I have followed Tripp's story for quite awhile and I think of him and you often. To watch your child suffer like that is the most unbelievable form of torture for a mother. I hope and pray for peace for both you and for Tripp. I am crying for you tonight and praying that you continue to be as strong and amazing as you have been for that beautiful baby!!

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  77. I have been following your story and am incredibly touched by Tripp's life. I'm so sorry that things are going this way, and praying for both of you tonight. What a tough guy he is! I am continuously in awe of your dedication and love that you pour forth everyday... you are an amazing example of mother's love.

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  78. I am also praying for you and TO Tripp. You are an incredibly strong, faithful woman who has cared tirelessly for this sweet boy. Hold onto your faith, family and friends as tightly as you can during this very difficult journey. I will also pray for a safe flight back to ND for your sister. Holly in ND

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  79. Courtney - my heart goes out to you and Tripp. I hope that you continue to find new ways to help ease his pain and anxiety. I have been in the process of getting an 'EB protocol' up and running in the NICU I work as a nurse in, and I have Tripp, (along with Jonah, Bella, Daylon.....) to thank for it.

    Thinking of you all up here in Chicago,
    Jess

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  80. I've been following you and your sweet man for awhile now but never commented. You have touched my life in such a profound way I can't even express my thoughts coherently. Tripp is so special and he's been placed here for a reason. He is beautiful and you are doing such a great job with him. I'm amazed at your strength and faith and it inspires me daily. I pray for peace and comfort - that Tripp will be content in his mommy's loving arms. He is such a fighter. I love you both even though we've never met. Praying fervently for you from Tennessee.
    Karla

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  81. Courtney, Your strength is inspiring. Heavenly Father choose you to be Tripp's mom for a reason, nobody else could do is as beautifully as you do. I know when it's too much to bear HE will carry you and help you through the heartache and pain. You've made a completely selfless decision that no mother should ever have to. I love what your priest said, so beautiful and true. You and Tripp have changed me as a person and especially as a mother. I wish I could take away his pain. I believe with all my heart that Families are FOREVER. You will be able to raise your sweet Tripp to adulthood, whether it be in this life or the next. Your not only Tripp's mother in this life, but through eternity, and our life on this earth is like the blink of an eye compared to eternity.

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  82. What a beautiful mother you are and what a sweet angel you have been entrusted with. May my God of MERCY and COMFORT cover you during this jouney!

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  83. I don't have any words, just tears. I love your son and pray for him (and you) every day.

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  84. I am in tears reading your beautiful words. I have never commented on your blog before ( I read "Praying for Jonah") but really wanted you to know that I am thinking about you. I am a paediatric nurse in Australia and looked after children with EB when I was living in the UK where I am from originally. I still remember all the children who I looked after and so have a little insight into what you are going through, so hard to do dressing changes when they are in so much pain....Love to you and all your family, Lorraine

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  85. I will continue to keep you and Tripp and the rest of your family in my prayers. May God hold you tight as you go through all this.

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  86. I have been following your blog for over a year now. I have grown to admire your strength and the love you have for your son and to enjoy funny stories of Tripp's antics (the videos of him always make me laugh). My heart is heavy after reading what you, your family, and especially Tripp are going through. I can't imagine what you all are going through but I'm glad you have each other to lean on through this difficult time. I will pray for comfort and strength for all of you.

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  87. I prayed to all the angels I know to look out for Tripp -

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  88. There are no words. My son had graph vs host disease, the wounds he endured are so similar to your little man's, it break my heart all over again, he passed away in January. I send you all the love & positive energy I can gather. Stay Strong.

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  89. Another reader here touched by your strength and love. Praying for comfort and peace for Tripp and for your family. Sending love from MN.
    Jessi

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  90. Praying for your little guy, who has more strength than any of us can comprehend.

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  91. Praying and loving you both from afar. Much love and many hugs.

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  92. I am overwhelmed with grief for Tripp's pain, I am heartbroken for your anguish as his mother, I am in awe of your strength and faith in God, I am just unnerved and I pray for you all and God have mercy that babies should have to suffer like this. I am speechless and moved beyond recognition.

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  93. You write so beautifully. The love you have for your little guy is so tangible through your words.

    I had tears in my eyes as I read your last two posts. I've been checking in on you guys. Tripp is such a trooper.

    I will remember to pray for you. The decisions that you have made and have yet to make. Tripp's pain. Puts life into perspective.

    ((hugs))

    What a beautiful and precious little guy you have.

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  94. Dear sweet Courtney-I have followed Tripp's story for over a year and prayed right along with you that Tripp would find comfort in the face of this terrible disorder. Words cannot express how much my heart aches for you and your family during these trying days. I pray sweet Tripp finds peace and healing-whether it be in your arms or in the arms of the Heavenly Father.

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  95. My heart breaks for all that Tripp has had to endure and all that you have been through as well. EB is the cruelest disease. You are an amazing mom and he is an amazing little boy. I am praying that Tripp's pain can be kept under control. Thank you for sharing him with us.

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  96. Courtney, my heart is broken for you and your family, and for your sweet boy. I will pray for you and your family during this time of letting go. I don't want to let go, and I only know Tripp through this blog. I can't imagine how hard this is for you. Love to you and your family.

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  97. Courtney
    Thank you for sharing Tripp with us. You are doing what is best for your boy and that makes you an amazing mother. I will pray for comfort for him and for you to feel the Holy Spirit whisper in your low moments.

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  98. I have never commented before, but I have been a long-time reader. I really don't know what I can say other than I am praying for peace and comfort for you and your sweet boy.

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  99. I am praying for you....

    I'm a mom who has had to say goodbye to her sons.

    I am in awe of your strength. You are an inspiration to every single mother.

    God bless.

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  100. Oh Courtney, if only... If only I could shoulder his pain, I would. To give him a reprieve so that you could take him to the park on a hot summer day and swing. Or a trip to sea world so he could feel the slippery smooth skin of a dolphin. Or to the mall to sit on Santa's lap. If only we, all of your blog family, could take a turn - I know each of us, and all of us, would hold his pain as our own. To let him be free for so many, many days... To love his mama and be "just" a little boy. Please, dear God, don't let him hurt for one more second of any minute! I love this little precious soul and his mama.

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  101. I have been following your blog through a friends Facebook. I do not know what I can say except that your son is truly a saint and you are an angel. I am praying for peace for your family and know that the Lord is with you right now and will be forever more. Your faith in God is a testament to all who have ever faced tests and difficult times. Thank you for your blogs. I feel priveledged to be allowed to know so much about your family. Tripp and yourself are inspirations and I am sure have brought many people closer to God. God Bless your entire family. May peace be with you.

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  102. I don't even know what to say. My heart hurts for you and I wish Tripp could have a pain free day. You are facing things no mother should have to and doing an admirable job of caring for him. I hope it's some small comfort to know that many of us out here give our children an extra hug, read an extra story or play an extra game because Tripp helps us remember just how precious life is.

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  103. Such a beautiful boy, and such an amazing mom!! Prayers and good thoughts for you all, although I think your priest is right --- prayers TO Tripp.

    Little man, although I've never met you, your happy spirit has touched me deeply. May you continue to be a blessing to your family!!

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  104. Courtney, I wanted u to know that we are praying for Tripps pain to subside. You and your family are so inspiring and amazing. Please let tripp know that he not only has adult prayer warriors he also has little ones. My daughter LeAnna says a special prayer for him everynight. My friends and I did a EB foot race in NC last yr at that time we purchased super cute shirts w his and three other eb babies faces on it. Everytime I wear my shirt and someone ask about them my 4 yr old digs deep and starts explaining how special each child is. We love Tripp and your family and my heart is hurting for u guys but if anyone can overcome such a painful experience it will be u and your sweet boy.
    Lacey

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  105. I have never posted before but have been following your blog (through Bella) since last year. Reading your story has touched my heart in many ways. Your love and devotion to Tripp will always be an inspiration to me and set a great example for all us fortunate enough to witness it. My daughter and I pray for Tripp constantly and just love him so dearly. He is truly one amazing boy.

    Praying from the Philippines,
    Laura

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  106. Courtney,
    I truly believe that you are a saint yourself. My heart is breaking for you and Tripp, but I know God has a plan for you and this blessed angel of a boy. I have been praying for him since I first heard his story less than a year ago. My love, thoughts and prayers are still with you and your beautiful son. I wish I could say something to comfort you, but I dont know how it would come across. Tripp will never be gone, and I know you know this, he will always be in your heart and when the time comes, he will be holding Jesus' hand waiting for the day he can great you. Stay strong, you are so strong. I dont know your little boy, but I send him and you and your family my love.

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  107. I have be following your blog for awhile now and praying so hard for Tripp, you and your family. Tripp is such a beautiful little boy and his story has touched my heart in a way I cannot explain. You are an amazing person and Tripp is SO BLESSED that God chose you to be his Mom. I admire your strength and faith and am continuing to pray for you guys.

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  108. Courtney- I have never posted though I check on you and Tripp everyday. Just wanted you to know that i think you both are amazing. My boys and I pray for you and Tripp each night before bed as well as when I think about you during the day. thank the little man for blessing our lives and being an inspiration. Praying for you,
    Heather from Missouri

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  109. Courtney, my daughter has Dr. Lisa Defusco as her ped. for her daughter. She is wonderful and I know it helps having someone who cares so deeply for your child.
    As I read your blog, my eyes filled with tears but knowing you have God in your heart and are able to see Him through Tripp is a blessing. Continue to be strong. You too are one of God's angels.

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  110. Thank you Courtney for sharing your beautiful boy Tripp with us. I'm sending strength to you, Tripp and your family. You are so blessed to have each other.

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  111. You are so strong! God bless you, and I pray too that somehow Tripp's pain will subside. I cant imagine his pain. You both are in my heart. Jeanne from New Iberia

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  112. Courtney - I don't even know how or why I have been following your story, but I know why I always come back to it. You are an inspiration to me. And Tripp is just amazing - I love his personality. It breaks my heart what Tripp must endure. There are things in this world I simply cannot understand, and this is truly one of them. Your picture of his bottom literally made me shudder. I am so sorry for all you go through. I am so glad you have so many caring people around you. I hope Tripp can find some comfort.

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  113. Praying for you and sweet Tripp more than ever, Courtney, My heart is breaking for both of you, but I know that God is going to comfort and protect you. Please know that we love you and that precious angel.

    Love from TX,
    Laura

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  114. courtney
    with God's grace and love i pray for tripp, that he finds peace from his pain, that God walks with him every step of the way and carries him when needed. I know that God is with you and in you too, courtney, He will show you the way...
    i have followed you for a while, finding you through lucy & ethel, and have been totally inspired by your courage, strength, love and compassion. i hope that we as a community can help you just as you have helped us, that we can carry you high and demonstrate the power of our love and prayers.
    much love
    sheonad

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  115. I am speechless...
    Thank you for sharing.
    All my love and prayers to you all.
    May the heavenly Father hold you close,
    and The Blessed Mother embrace you.
    Linda

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  116. Dear Courtney, We don't know one another, and probably will never meet, but I've been reading your blogs since I saw your story on tv, and through a friend on Facebook. I don't know how to comfort you other than by telling you a story of loss and how God helped me through it. I have never lost a child, only miscarriages, but I feel your pain. I have, however, lost a brother to brain cancer. After the initial shock of his diagnosis, his radiation treatments, his slow decline from being a force of nature and shining star in our lives, to his becoming like a child again, and finally watching him slowly leave his body, I too felt "how will I ever get through this, losing him forever?" I prayed so hard for God to let him live, to make him better, to cure the cancer, but it was never in His plan. Finally, when my brother spoke his last words and went into a coma, I couldn't stand the pain of watching HIS pain, I prayed for PEACE, for God to take him peacefully, and for the pain to go away. As much as I wanted to keep him here with us, I knew he wasn't my brother anymore, he had gone to Heaven days before and I was praying to an angel. Just a few hours after I whispered in his ear that it was ok to go to see our mom and dad, and that we were all going to be ok, he took his last breath. I saw a mist near the window where he lay, and I knew it was him telling me he was with God. Pray TO Tripp, and tell him you will be ok, and that it's ok to go with the angels, even though your heart is breaking into a million pieces, as mine did, and still does. He knows how much you love him, and he knows you will be with him someday, and that you have done everything in your power to make his life happy. He will let you know when he is ready... your heart will know when to let him go. As hard as that is to accept, if you pray for peace for Tripp (and yourself), you will release Tripp from his earthly pain. Tripp was given to you by God as a gift, and you are a gift to all of us who read your blogs. You are truly an incredible human being for sharing your life with everyone while you are going through this with Tripp, and making everyone aware of EB. God Bless You and Tripp and everyone who has been a part of your lives through these past years.

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  117. Courtney~

    You and Tripp have touched my heart and changed my life.

    Sending my prayers for your peace and comfort as you continue down this road with your sweet angel boy.

    May God bless you both.

    With Love~
    Marianne
    UT

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  118. God bless you, Tripp and your entire family. To see and read the faith that holds your entire family brings me to tears. God did choose Tripp to carry this cross, and he also chose you to be his mommy because he knew how much you would love him, let him thrive, and let him be with his Lord when it was time. You are a wonderful mother for loving your son so much. You are in my prayers. Tanya

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  119. Courtney- you are a strong beautiful mother that shows us what Christ would do... you sacrifice and demonstrate what Jesus would do if he were physically there to care for Tripp each day. Heavenly Father is with you every step of the way. Your precious Tripp is heavenly.

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  120. As a mother it makes me cry to see your little baby endure so much pain...

    I am not walking in your shoes, so there is probably nothing I can say to make you feel a little bit better...

    all I can say is, that I will pray for Tripp...

    we never know Gods plan for us... we don't know why some things happen... but what I know for sure... in heaven he will be next to God and there will be no pain and no bother...

    The warmest regards from Germany

    Andrea

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  121. You and Tripp, your mom and dad, your doctors and nurses, are strong and beautiful.

    Tripp is our hero.

    Thank you, sweet little boy, for teaching us many lessons, day after day.

    Hugs and kisses from across the ocean

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  122. This so breaks my heart! I cannot imagine the physical and emotional pain you are all enduring. I pray that God will carry you, Tripp and the rest of your family every day, now more than ever and that He will grant you comfort and peace. God bless you.

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  123. Your boy is beautiful. He is perfect, and I am sending you all of the love and strength that I can muster from Hawaii. It is not right that he has to go through this, but you are an amazing mother who makes his life so good. More than pain, know that Tripp feels love, the unwavering love of an incredible Mother, and the love of thousands of other Mommies the world over.

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  124. Oh gosh Courtney I simply do not know what to say.
    I type this with tears rolling down my face because it hurts me to see him in so much pain and fighting so hard. I cannot imagine the pain you and your family are also going through as he worsens.
    I know I have never met you guys but I have been following you guys for almost the whole 2 years and my heart breaks for you.
    I know that when god calls him home I will be very sad and you will be devastated.
    I am so very sorry for you all...god keep you in his care and as always I will pray for your family

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  125. Praying relentlessly for Tripp. I also pray that you feel God's peace surrounding you. Tripp is such a beautiful boy.

    God Bless all those that are helping him try to be comfortable.

    Much love to you and big hugs

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  126. All my love and prayers to you all! Big kiss to Tripp ! He is definitly an angel !

    Love from Portugal,
    Móncia

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  127. I have kept up with Tripp for about a year. I know that most Mommys would do what you are doing for your baby boy, but you do it and feel it in a special way. I believe that Tripp (and you) are saintly! Heaven has a special place for your baby boy one day and that special place has a reservation for his SPECIAL MOMMY too! No matter what happens or when it happens you and your baby boy will NEVER truly be apart....you will be a part of each other for now and for eternity. My prayers for you both on this journey....May you both find peace and healing! I dont know you but I truly feel love for you and your baby boy. Hang in there and though you dont know me I am available for listening! :)

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  128. Thank you Courtney for updating us as you care for your precious Little Man. I'm praying you feel the Holy Spirit holding you while you hold Tripp. You are loved.

    Praying in Waterford, MI
    Kim

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  129. Praying and crying for you! You're so strong! Tripp is lucky to have you as his Mommy! The love that you've given him shows in your last 2 pictures which broke my heart. I hope you find peace with whatever decision you have to make. <3

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  130. Love to you Courtney... I am praying for Tripp and YOU~ that God will hold your heart and hold Tripps little hand. Hugs to you~

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  131. It's times like this that I'm not sure what to pray for. I'd like to pray for a miracle, that God would heal Tripp and take away his EB. But I think we all know that that is not possible, that it could never happen. So, I'm left with only the choice to pray that God takes away his pain, and gives all of you some peace. I'm praying hard for that.

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  132. Courtney I found your blog through Patrice's blog. I have been checking back on your's and her's to see how sweet Tripp was doing. I was just praying for you this morning when I suddenly heard this song in my head like an answer back "Hallelujah grace like rain falls down on me" I pray that God's grace is raining down on you, Tripp & your family. I can't read your blog without crying; without crying out to God why him no child should endure this take me instead. All the things you have prayed before. I'm sorry Courtney, I'm sorry for you I'm sorry for Tripp I hope he endures this and although I've never met you I love you & Tripp & I'm carrying you in my prayers.

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  133. My dearest Courtney: I really don't know what to say. I feel your pain and I am so sorry that it has gotten to be this bad for your precious son. Tripp is one remarkable little boy and has touched so many lives. We will all continue to pray for Tripp and your whole family. God Is Good. Love and Peace Leah's Nana

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  134. As always, I have you in my prayers.

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  135. How gut-wrenching and heartwarming at the same time... i'm constantly in awe of your spirit and trust in God to take care of you and Tripp. I pray that He continues to wrap His arms around you and that brave little one.

    Tripp will forever be a true hero of mine.

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  136. Be Strong... my heart and prayers are with you...God is Good and he isgoing to take care of you all...allways.

    Love

    Sandra Coelho
    Portugal

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  137. Dearest Courtney
    I have never met you other than through your blog. And I have no words of comfort only that I am praying...all the time...
    in Kansas City,
    Kathryn

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  138. Please know that I am praying for Tripp's comfort and for God to give the doctor's the knowledge to figure out what best for him and to make him pain free. I'm also praying for you and your family, that God may give you strength, courage, and peace as you go through this. Tripp's story has definitely changed my life, so thank you for sharing it. I truly believe he's angel here on Earth.

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  139. Nothing but prayers for your family, and especially little Tripp. He has been through so much. I am glad you had a good experience in the hospital, and that the doctors and pharmacist are working so hard to try and get Tripp comfortable. Praying!!

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  140. I woke up this morning with you and Tripp on my mind. Although I can't find words to help you heal, know that there are alot of us out here praying for you.

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  141. Courtney , You are so amazing. I am in awe of your love for your precious Tripp. I think of you both everyday and pray for you.I only wish there was something, anything I could do for you.. You are the most incredible Mom I have ever come across.
    Warm thoughts,
    Chris

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  142. Thank you Lord for allowing Tripp to have such a wonderful mommy. While no amount of time will heal the heartbreak, thank you for allowing Courtney to do the best she could on earth.

    I know for certain, that I could not walk in your shoes. I do not have it in me to not be consumed by sorrow or self-pity. I don't even think calling every one (you, your parents, etc) who has helped a hero is good enough. All of you have been "God sends" for Tripp. I thank God daily for you and your family that even though you'll have to let go-that each and everyone one of you got to be with Tripp. I thank God daily that he promises a place in heaven where Tripp can be pain free.

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  143. Your strength and faith in God is (and has been for a long time) an inspiration to me. I am praying for you and Tripp and your family. My heart aches for you. I want to thank you for sharing your journey and beliefs. i don't think I could ever put into words how much you and Tripp have given to me.

    God Bless you.
    Shanna
    Mobile AL

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  144. I was asked by my dear cousin Dwayne to pray for your family. Your blog is a beautiful tribute to your precious son. Your strength and fortitude are inspring and humbling. May our Heavenly Father bless you and keep you and give you peace.
    Praying for your family in East TN.

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  145. I agree with the priests, Tripp has carried this cross to change the lives of so many here on this earth. His presence here is larger than the physical wounds that he carries, you have to know that and find peace knowing that he was put here to change others and change the world. God picked you to be his mother because you were the best one to care for him, love him and tell his story to us all. I am praying for his comfort. I am praying for yours and your family's comfort. I am praying for a cure. xoxo

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  146. My heart hurts for you and your family - and for your beautiful, amazing, resilient, precious Tripp. You are all in my prayers, now and always.

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  147. I shouldnt have read this while I was work, tears are coming down my face steadily. Courtney, you are such an inspiration. I can't imagine going through what you all are going through. Your family has touched many lives im sure. You all are in my prayers.

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  148. I should not have read this while at work either, because the tears are falling. I am new to this blog and you are truly a inspiration to all. You and Tripp will be in my thoughts and prayers!

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  149. Prayers for you and your sweet boy.

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  150. what an amazing little boy you have. I just came across your blog and I can tell how sweet and brave he is!! I will be praying for you. Outliving your child is a hard road to go down and I pray you wont have to know the pain. What a brave mama you are hold him close, best of luck many loves and prayers!!

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  151. Praying for you Courtney! I have no children of my own...but love kids dearly! Can't imagine what you're going through. Such a testimony of God's grace to hear your story and see the faith you have in him amidst all of your struggle. Praying for comfort and peace in this season of life for you! May God pour his favor, love, and blessings over you and your loved ones!

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  152. Tears are running down my face as I see the horrible extent of the pain this little saint has endured. And I love that your priest called him a little saint; I TOTALLY believe that. I have never seen your blog before, but just from reading this entry I see that he was just as lucky to have the family and community that he does, as you all are to have him. May God shine His grace on all of you.

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  153. God Bless you Courtney! You are the most amazing Mother there is. God Bless Tripp. That is really all I can say as I sit here crying. My thoughts and prayers are with you.

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  154. What a beautiful little soul. While I cannot begin to understand, I wish you all the love and grace that you both deserve. While you are taking care of your boy make sure you take care of yourself too, because as a momma myself, I know you are hurting right alongside him.

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  155. Courtney, you & Tripp have touched my heart in such a way that no one else ever has. I don't even personally know u, but feel like I do. I think of you & Tripp everyday, and I pray for strength for you, and for Tripp to not feel anymore pain. You two are just amazing, you must be angels sent from above to teach us all a lesson. There is just no other explanation. I am just in awe of the pictures u posted of Tripp, I've just never seen anything like that on anyone, let alone a little baby. I'm just so sorry, I wish there was something I could do, something someone could do to make this go away for u guys... but I don't believe that is in the Lord's plan. Tripp is a saint, & your life will forever be blessed... u will always have him looking out for u, he knows the remarkable amount of love u have given to him on his life here on Earth. I wish I had more words or could take away the pain. I will continue to pray.... you & Tripp are always on my mind, forever in my heart.

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  156. My thoughts and prayers are with you all. Tripp is absoultely amazing and so blessed to have you as his Mama. Although I"m sure it's the other way around too.

    Your priests words were spot on and I pray that provides you comfort in the future.

    God bless and lots of prayers, hugs and love.

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  157. I've followed your story for a long time, you and Tripp are amazing and so strong. What a gift you've been for each other. You are in my thoughts and I hope for strength for you and for Tripp.
    Wendy

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  158. My heart goes out to you and your sweet boy!!! I'm so sorry that Tripp has to go through such pain. Praying for your little man and for you as well!!!!!

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  159. I have never commented before but I have a 1 year old daughter and I am in tears reading this post. What you are going through is harder than I can imagine. Please know that I am praying for you and your family.

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  160. I cannot imagine what you are going through. By reading your thoughts I know that you are one of the strongest people I have ever known (or read about)!! Just as you said that Tripp was chosen to carry this cross, you were too. I am continuing to pray for God's will in your situation and to give you and your family peace about it all. Love from Tennesse, Candi Smith

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  161. My heart breaks for you. May you find comfort in knowing that one day you and Tripp will be together again and you will see him with a perfect body and with no pain. And great will be your joy!

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  162. My heart aches for the pain your precious little boy & you are going through. May the Lord, in His infinite wisdom give you both the peace & comfort you need; now and for eternity!

    Praying in Seattle,
    Lanelle

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  163. Take a deep breath and carry on - its what mothers do and you are doing an amazing job. You and Tripp are loved.

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  164. I've been thinking and praying for you, Tripp, and your family ever since Trey called to find his medication Monday night. You and your son have been in my continued thoughts ever since. He gave me your blog address to learn more about your son. I greatly admire your strength, endurance and faith in taking care of him, and I pray for continued strength and grace for you and peace and comfort for him.

    Tami D. in Slidell

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  165. Praying for you! Just came across your blog! I'm praying for you and your family! that sweet boy of yours is def on my heart!

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  166. heartbreaking is the word that comes to mind when I read this post. Selfless is what comes to mind when I think of you and your family. I can't even imagine what you are going through, but you are amazing, loving, caring, compassionate, selfless, and beautiful. Tripp is so lucky to have you as his mother....blessed.....prayers coming your way and for Tripp. Tears flow as I write this. Thank you for sharing your story.......God bless you and Tripp....

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  167. I have followed Tripp's journey and have been truly touched. You are an amazing strong mother/person and he is a wonderful boy. Just reading your blog gives me strength when I've had a bad day. You are an inspiration to me. My heart aches for you and for Tripp. I am praying for you both! Tripp is so blessed to have you as his Mommy! I share Tripp's story every chance I get. God bless you, Tripp and the entire family.

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  168. Praying for peace and comfort for Tripp. I hope the medical team can continue to find new ways to ease his pain. Those pictures are beyond belief. What a hero Tripp is.

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  169. Courtney,
    From the first time I met you, I knew you were a phenomenal lady. I can not tell you the number of times Tripp runs across my mind and it's not always his illness but I sometimes just focus on his strength. You and Tripp are 2 of the strongest people I know! I am not yet a mother, just a Godmother to a wonderful 6 year old girl who is my life, but I can earnestly say, when I do become a mother, I pray that I am HALF the mom you are! You are awesome! I am always praying for you guys. You both have touched the lives of so many people and I am just especially touched by Tripp's resilence...he's such a trooper..Tripp the Trooper! God Bless. ~Anedra :-)

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  170. What an amazing beautiful little boy! And God chose well in giving him parents. May He keep you strong through this. My heart is torn for you all and Tripp knowing what it's like to watch my own son's body fall apart and fail. What got me through is what is getting you through. His spirit grew stronger and stronger even though his body was weakened. Hold on to that strength he has. He is amazing. I can see it just in looking at his pictures. He is a blessing. Only God knows how much longer he will be with you, but his blessing will endure for eternity.

    Praying and sending much love.

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  171. i am praying for you family. God Bless you and your sweet boy.

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  172. As a PICU nurse I have held young children in my arms or stood by their bedsides as they have suffered, as some have gone on to meet our Blessed Saviour... It never gets easier to see a child hurting. Never. For a year I have had the honor of praying for Tripp, and yes, it is an honor to pray for your precious boy... My heart is breaking for him, for you, for your precious momma who loves your boy so... Praying that God in Heaven surrounds you and Tripp, that the Blessed Mother, who watched her own son suffer, is petitioning our Saviour to comfort Tripp, to ease his pain, to ease the pain that is engulfing your heart... Tripp is carrying his cross and he is the bravest person I know... and so are you. Much love friend and continued prayers.

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  173. I don't know you,and can't even tell you how I found your blog, but what an inspiration you are. You are truly a testament to God's promise to us. Praying for you and your little man!

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  174. I am praying so hard for little Tripp's comfort and for your strength and peace. Your unwavering faith is such an inspiration to me.

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  175. God knew that little Tripp was going to need some extraordinary parents to care for him here on earth. But somehow I feel as of even God must be amazed by your dedication, your spirit, your ability to love and care for your little boy in circumstances so difficult that most of us couldn't cope. Clearly by the responses to this post you have touched many, many lives with Tripp's story - I just wish it did not have cause him such physical pain - and you and your husband such emotional turmoil to care for your little boy. I wish I could do something - all I can offer you are prayers for your whole family. I will light a candle in honor of Tripp this evening. I hope that this message gives you just a smidge of comfort and that you feel the love and prayers from so many people wrapped around you lifitng you up tonight. love from northern CA

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  176. Just know that people you've never met and probably never will are praying for Tripp and his family. I've cried for Tripp, like he was my own son. You're right; you were chosen to be the mother of this angel, what a blessing - what a gift. Thank you for sharing him. His story reminds me of how precious life is, how every moment should be treasured, and the miracle of little babies. When he does take flight, rest assured that his life was not in vain. In two years, he's done what some people strive to do in a lifetime.

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  177. your little man is my hero.
    and he is in my heart and in my prayers.

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  178. Courtney, I don't know you but I happened on your blog and read about your angel. I live in Texas and I want you to know you will have many, many prayers coming your way from my family. Tripp has an amazing soul and what a blessing you have been given. He has been blessed, too, with you. I am so grateful you are a person who leans on God because He will be the only way to get through this, whatever the outcome. I cannot even imagine how much it hurts you to have to face losing your baby. I do wish there was some measure of comfort I could provide you but as a mom I know nothing can. I hope you can feel my hugs from here.

    Lori

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  179. Hi Courtney. I too don't know you, but a friend posted your blog and recommended friends to read it. I did this morning and I haven't stopped thinking about your little boy, Tripp. I just became a Mom for the first time this past year and know how much love we have for our little ones. I am going to continue to pray for your little guy and the rest of your family. I am also going to add this to our church intentions. You are a beautiful writer and I just hope that you and your family find peace and comfort in God's loving arms. Tripp will be on my mind tonight when I say my prayers...And I continue to think of you and your family. Please know that us in Madison, Wisconsin are praying for a miracle

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  180. I hope your little man can feel His love and the peace he needs. I can't imagine watching my own child go through that pain. You are so brave and I hope that Tripp can be as comfortable as possible.

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  181. I was lead here by a follower of yours. Your precious son IS a Saint. My heart aches for all the pain he has endured.
    Keeping you in my thoughts and prayers.
    Praying for his comfort and your strength.
    ((HUGS))

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  182. Dear Courtney:
    I am privileged to know (and LOVE) Patrice and Baby Jonut! I have added you and sweet baby Tripp to my prayer list. May His peace surround you as you care for your precious boy! May you rest under His wings! In His great Love! grAimee Pence

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  183. Dear Courtney,

    I just discovered your blog through my cousin's Facebook page. I just finished reading Tripp's story and cannot stop crying at the thought of all he has had to endure. I am in awe of your strength and faith in God. I will keep you and your beautiful, precious angel Tripp in my constant prayers.

    Peace and love,
    Tara Kraus
    League City, TX

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  184. Thank you for sharing His story.
    I pray to Tripp.
    God Bless.

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  185. What a beautiful boy.
    I'll be thinking of your family.

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  186. I have followed portions of your story as a result of getting to know Karrie Kannell. Praying that God provide wisdom, peace, comfort, time, and strength. He is a mighty God. You have a team a prayer warriors and friends. Lots of love to your family.

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  187. Hoping a cure isn't too far away, no child deserves that sort of suffering, ever

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  188. This is my first time here and Tripp has already stolen my heart and taught me about strength. As did his mama. Through my tears I am praying for you, your beautiful boy and your family. My heart aches. Sweet Tripp, you are loved.

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  189. WE love you and Tripp! My daughters and I pray for you daily. My youngest daughter ask about baby Tripp every day and tells me that one day he will play with her because she loves him! (she is 3)

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  190. My prayers are with your family! You are such a strong woman to endure this! I pray Tripp is blessed with the comfort he deserves. No child should have to be in this type of pain! You have done all you can by providing unconditional love and comfort! He is blessed to have such a wonderful family, and I am certain the angels have always been with him! Tripp has touched so many hearts, and though he is just a baby - he has taught us what is important in life! We are all seeds planted by the hand of God only to bloom in his kingdom when he calls us home! Stay strong!

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  191. I have been following your blog since Tripp was a new baby. I hate so much that he is in such pain. You are such an amazing mom. I'm so sorry you are going through all this. Praying for peace and comfort for you both.

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  192. Thank you Courtney for your strength to take time to write at this most difficult time. I check you blog every day for news of how Tripp is doing. My 3 year old and I pray every night for Tripp and sing Shoo Fly in his honor. My 8 month old boy will also know that song well and I will tell him about a special little angel named Tripp one day. I echo what so many have said- Tripp has changed so many lives and hearts, mine just one of many. May sweet Jesus wrap you both close in His arms and give reprieve from pain as he prepares for Tripp's arrival. I am so so sorry your momma heart has to suffer like this Courtney. Thank you for bearing your soul and allowing us all to know your sweet, sweet boy. May love, prayers and blessings be showered upon you both.

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  193. Your poor, poor little man! I, too, will offer my prayers that his pain be eased. I know that you are suffering as you watch your valiant son endure such a horrible disease. I'm glad your sister is with you.

    Words cannot express what is in my heart for you and your son and your family at this time of great, great need. I am so glad that you are a woman of faith and can rely on God.

    I know that one day I will open your blog and read that Tripp has been set free of his earthly body and I will rejoice for him as I know you will, and, at the same time, I'll mourn with you your empty arms.

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  194. I came here via Amy Lucas, just wanted to tell you that your family is on my prayers.

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  195. You have so many posts to read so if you even get a second to glance at my post please know that your little Tripp has touched my heart and I will pray for peace and comfort for him every day. I have a child with special needs and some days I feel drained, defeated, but you inspire me...you are an amazing mom and Tripp is so lucky. Your love is undenial, unconditional and so beautiful. Your baby boy will be forever remembered. He is such a precious gift. I am crying right now knowing the sadness and difficulty of the decisions you are making. I see you holding your sweet boy and I just wish that things like this wouldn't happen. But, trust in GOD that he has a reason. Through Tripp thousands of lives will be forever changed. God Bless you and your family. God Bless your little man.

    Tawny Niemann and Family from California.

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  196. Dear Courtney, I've been reading your blog for over a year now but this week I cannot stop thinking about you and about Tripp. My heart hurts for you and poor Tripp. I am praying every day for God to grace you and Tripp with his loving presence. I know that you probably feel alone, and your are the only mother Tripp has. But many of us are thinking about you and wishing we could help. I hope that it helps you to know that so many of us are thinking about you. Prayers are continuing...Jennifer

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  197. thinking about you guys so much. and praying for tripp.. praying that he is not afraid. and not in pain. but calm and comforted. . hes such a character. i am thinking about him dancing and doing "muscles" and his sweet sweet spirit. hes such a champ. so brave. and he is such an angel , like you say.
    and man.. YOU are amazing. giant prayers for everyone your way. you are a testament that you can do all things with God.your faith is powerful. (xoxo tripp.. it is totally possible to love a sweet boy youve never met.)

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  198. I just wanted to drop by and tell you I am praying for you all.

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