Tuesday, July 5, 2011

Elmo had four ducks... quack, quack, quack, quack!

This song has played in Tripp's DVD player so many times in the past week that it's the only possible thing that I can think of for a title.  It's all I hear ringing in my brain all day long.  I even dream about Elmo's darn ducks... 
Little man has been SO high maintenance lately, bless his little angel heart (and to some of you up North, I know "Bless your heart" means something ugly... but to me it literally means "Bless his heart"- I'm not cursing my child :) haha.  He knows exactly what song/CD he wants to listen to- it's just the "us figuring out which one he wants" part that is tricky.  About 95% of the time, it's Elmo's Ducks... but every now and then he likes to switch it up and we have to guess which one he wants until he finally smiles (which means "yes").  And he may only want to listen to one song on that CD once or maybe 25 times in a row, then on to the next.  
And then the next game is figuring out what he wants in his hands to hold (while he's rocking).  He only hold certain toys together at the same time, and only hold certain ones in each hand.  For example, when he holds Big Bird and Elmo together, Big Bird has to be in the right and and Elmo in the left.  
  And usually we can guess easier by what he's holding in his hands.  If he has a duck- it's "Elmo's ducks", Big Bird- it's "Big Bird's song," Ernie and Elmo- it's "One Fine Face" (a song that Elmo and Ernie sing together.  Get my drift?  Ok, now I know that you guys officially think I'm losing it.  Don't worry... I think I am, too.  Actually, I'm positive that I am, little by little. 

Oh my little sweet man is breaking my heart these days.  The days are passing by so fast... and not only is his disease progressing and his sores and things getting worse, but I'm having a lot of guilt for not have taken the proper steps "education-wise."  I feel like I should have been having speech therapy, physical therapy, and occupational therapy in here over a year ago.  We had OT while we were living in Norco, but after the move, I never contacted anyone to get them here.  And yes, I know I've had A LOT going on and on my plate, but that's no excuse.  Little man's needs should have come first.  I'm in the process of getting them in now.  Better late than never, I guess.  
Hopefully they will be able to help us a lot with the "communication" part.  It's so frustrating for Tripp and sad for us when he's trying to tell us something that he wants and we can't understand.  He's older now and VERY opinionated (I know, surprise surprise), so we need to have a better means of communication going on other than just "guessing" what he wants.  I'm hoping we can try some type of comunication board.  

Medically, I would say right now (today) he is stable.  Our sweet,  super awesome home health nurse, Kati came last week to draw Tripp's blood again.  Everything went really well- I was VERY impressed at how good she was (but wasn't really nervous at all because she works in the PICU at Children's hospital).  Anyway... we got the results back :

BUN- 33    Normal 6-22
Albumin- 5.1     Normal- 6.3-8.2
WBC- 22.7    Normal- 6-17
HGB- 10.9    Normal- 11.3-14.1

And a few other labs were just a little off- but overall I was VERY impressed considering everything he has going on how well his labs actually were.  
E X C E P T:
His Platelet Count was 1.322 million.
The normal range is 140-400 thousand. 
The last time we drew his labs in October, his platelets were at 900 thousand and Dr. Defusco was very concerned- so I'm not quite sure what she's going to say or what we are going to do about it.  I haven't heard from her since we've gotten the results back because she's on a VERY deserving vacation! :)

Your platelets are what help your blood to clot when you cut yourself or damage a blood vessel in any way. 
 I am no doctor, nor am I a platelet count expert- but I am a nurse, so I do know that a very high platelet count means thicker blood, which means less circulation, which means a high risk for a thrombosis (a blood clot), which could cause a stroke or heart attack.  In Tripp's case, I think it could have a lot to do with why he has so much trouble breathing and why he is so short-winded when he stands up to play.  A higher number of platelets are common in EB and other things such as anemia (which he has as well), leukemia, cancers.  I guess it's the body's way of adjusting.  And in EB, it's almost a good thing, because when Tripp has a bleed, it almost stops immediately.  Otherwise, he would be losing a lot more blood than he is now.  BUT, being THAT high is not good- and I'm thinking could get borderline pretty serious.  But I'll have to wait and talk to Dr. D and let you guys know what she says.  

Baths have been bad again.  Not so much the "in-between" part, but the beginning and the end now (for some reason) are just horrible.  Lately when we sit him up to do his arms, he just cries and cries and makes himself so upset.  I encourage anyone who wants to know the true meaning of pain and suffering to come join us for Tripp's bath.  I would rather someone cut of my right arm every other day than have to put him through that.  I'm serious.  Mom and I have to psyche ourselves up mentally before we do it.  And I know it's the scariest, most awful thing for Tripp.  I hate that for him.  I get a sick feeling in my stomach on every bath day.  And I know he can sense when it's bath time, too. 

But things are just okay around here as far as Tripp is concerned.  The days just consist of making him as confortable as possible and doing anything we can to make him smile.  
Thank you all again for the continued love, prayers and support.     

Just one side of my poor baby's leg.  
See why he gets whatever he wants?? :(



  1. I've never posted before but I just want to say that you are amazing, and Tripp is amazing. He is SO lucky to have a mom who loves him so unconditionally and takes care of his every need, regardless of how much it hurts you, too. And the fact that he still smiles through all that he is enduring is testament to that fact. I'm praying for you and your sweet little fighter, and hoping for a miracle.

  2. Thank you so much for the update sweet girl. Our little man certainly does have his struggles, and I KNOW that I have no idea of true pain and suffering when compared to what you and your little son go through. I think I can actually identify with your pain at bath time, more than his. I can feel that your heart breaks for him. Your strength, and that of your dear mother of course, serve to strengthen me in many areas of my life and for that I am so very grateful. I continue to pray for all of you, and to struggle to understand the purpose of all this. We have a loving Heavenly Father and I know that He suffers for Tripp too, and that Tripp is a blessed individual. Do I sound insane? I hope not, because Tripp is blessing and changing lives and I know his reward will be awesome. I hope all of you can actually and literally feel the prayers on your behalf. My love to you and Tripp and mom...and my continue devotion to prayers on your behalf and on their way. With lots of love, Jan

  3. Hi Courtney-

    Please don't beat yourself up - it is SO easy to do, but don't allow Satan to pile that guilt on you. You are taking AMAZING care of Tripp - and you amaze all of us on a daily basis. I wish I had some great words of wisdom to make things easier for you (or even better, to heal Tripp!), but please know that I am praying for you and Tripp. We love that sweet boy here in TX!!!


  4. Wow. The more I learn about EB with Tripp and Daylon and see what these sweet boys go through, I become more and more speachless. If that makes any sense. Just looking at his poor leg brought tears to my eyes. I can't even fathom what you guys deal with on a daily basis. My family and I pray for you all the time. I hope that all of these prayers you can feel and they lift you up and strengthen you. Thank you for sharing your story.
    Love Memory

  5. Thanks you from the bottom of my heart for taking the time to update. What a sweet sweet boy! We think about you all the time and remember you all in our daily prayers. Such a journey you are on together and the love of each other shines on! May the Heavenly Father continue to surround you with His love and give strength! I read your blogs and look at my three children differently. You make me appreciate them even more than I thought possible. All children are a gift and blessing, especially your sweet Tripp. Love to you!

  6. "to waddle with! and quack together!" Ok ok ok sorry I'll stop :)

    Prayers for strength, endurance, comfort for Tripp, and mental stamina for momma and grandma on bath days.

    If you post ahead of time what day and time you'll be doing a bath, I'll make sure to pray while you do it. I don't care what people think, I KNOW it works :) God bless you guys \o/

  7. Oh that last picture of his leg made me gasp. I cannot believe this hideous disease and all the pain that Tripp has to endure. He truly is a hero and you and your parents are just amazing as well. Praying for Tripp . . .

  8. Thanks so much for the update! Praying every day for you, Tripp and your family! Hugs to your little superman! You are doing amazing with your precious boy, and you are right...it is never too late for that extra help!

  9. praying for you and your sweet little gift from the Lord. May He bless you with His strength, His love, His joy, and may precious Tripp find physical strength and healing from the One that loves him so much more than we can imagine. What amazing people you are...your whole family! I am touched deeply every time I read any post by you and instantly what was once a problem in my life becomes nothing compared to yours.
    Blessings to you, dear one..

  10. I have been reading your blog for a month or two now and I just wanted to let you know that I am praying for you and Tripp. I can't imagine what it must be like to have to see him go through such suffering, like with bath time. I am crying just to think about it. I have never wanted a cure for a disease so badly in my life, I have and will continue to pray and beg God for one. It is one of my dearest hopes that they will find a treatment for Tripp.
    That being said, you and Tripp are definitely an inspiration. My children ask about him and they pray for him too. I wish I could convey to you how deeply your little boy has touched me. The Bible talks about entering into each others suffering, and though I can't do that physically, spiritually and emotionally I ache for you both. Much love.

  11. Many prayers sent your way!! Stay strong! He is such a little blessing! Tripp is AMAZING and so are you!!
    I can't even imagine what you and him are going through!
    Much love and hugs!!

  12. I check often for an update, though I know how hard it must be to find the time and energy to put something together. I can completely understand why all you do, is whatever Tripp wants! He deserves everything and I pray for him very often! Its amazing that he has such a great support group thinking about him so often! Thank you for the impact you make on my life daily, without even knowing it!

  13. Hey DJ, play that Elmo tune one more time! Sorry to mess up "bless your heart" forever! LOL. I blame it on my sister's BFF in North Carolina!

    I am soooo glad to hear that you feel so comfortable with your home nurse. There is so much that you carry on your shoulders; it is a blessing in itself to NOT have to worry about her as well.

    Sorry to hear about the platelets, and bath time. I totally understand the psyching yourself up part... I used to pound a giant mug of coffee before bath and bandages and even put on my favorite team jersey to "get me in the zone" of turning off my heart and turning on my clinical eyes, ears, nose, and hands.

    You're a phenomenal mom to that blessed boy, despite whatever mistakes you think you've made. There were so many times I thought I coulda shoulda woulda done a better job as Bella's daddy... even while spending 12-14 hours by her side day in day out. That drive to be EVERYTHING for your little Tripp is precisely what makes you such a great mom in the first place. I know it's a workout for me to be patient and forgiving with myself. I'm guessing it is for you, too. We just love you guys to pieces and wish the miles weren't so many between us. Much Much love, the Ringgolds

  14. You have an amazing little boy and it is obvious what wonderful love and care you and your family give him. I cannot even imagine how difficult it must be to have to do painful things to him like a bath. And, yep, I agree--spoil him every second you can! I hope the PT,OT, speech, etc, help with the communication so you can spoil him even more!

  15. Courtney, I don't know how you do it. I know your heart must be breaking. It must be the nurse in you that takes over at bath time. I'm a nurse, also. I know there are times at work that I would have to put on my "nurse face" just to be able to get thru a tough procedure. If it were my own child, I'm not sure I could do it. You are a very strong person. I wish I lived closer so that I could help you out.
    Tripp is such a strong little boy, and so lucky to have you for his mommy. The way I see it, give him whatever his little heart wants. Spoil him for ever time he has left. He suffers so much with his dressing changes and bath. I don't think an adult could cope with so much pain.
    My thoughts and prayers are with you.
    Carla Spradlin,
    Taylors, SC

  16. I'd give him anything and everything he wants too! His poor little leg just makes my heart hurt for him so badly. I can not even imagine the pain or discomfort he must feel. Praying for ya'll always. Ashley

  17. Please don't second guess anything or at least let it be an inhibitor to every little bit of happiness and peace you require.
    As parents we do what we can and in the grander picture our love and devotion for our child is paramount. You have that in spades your path from any given moment will be what it needs to be. But if you think the range of Tripps care should broaden, then advocate or find someone a friend that can help and go for it. The squeaky wheel gets greased, I doubt very much you'll have to squeak all that loud to get all those things for Tripp. You are an exceptional MOM! Great work and keep up with being you.
    Our dressing changes for our little RDEB sufferer have too become somewhat of a stressful and the anxious time, I feel your pain.

  18. The pictures that you shared in your post were painful to look at. I'm so sorry that your little man is suffering. It's not fair for him. It's not fair for any baby to suffer like that. I'm praying for his peace and healing. You're a wonderful mom and a wonderful human being. Your love for your son is bigger than a mountain. It makes me stand in awe to think of what God's love for his children must be!

  19. Forgot to mention that I got the book that I think you recommended about the little boy who went to heaven. It was great!! Even my husband enjoyed it and passed it on to his coworkers at hospice. Thanks!

  20. Courtney,
    I have been following your blog for awhile now. I want to let you know that you and Tripp are in my daily thoughts and prayers.

  21. Courtney, Thank you so much for updating the blog as I don't know how you find the energy and/or time.... My Grace (3) and I pray for Tripp daily and you both pass through my mind many times throughout the days, especially when I bathe my 8 month old... To echo someone earlier that said if you could let us know when you bathe him, I would love to set aside prayer time at that time. Also as was said earlier, please don't let satan bog you down with guilt about PT's, OT'S, etc.... He is the father of lies and you are seriously giving your ALL and Tripp knows he has the best mommy in the world. Keep spinning some Elmo mommy ;)

  22. Hi!! Just a comment from a speech and language pathologist.....you and Tripp communicate in ways that no other two mother and son I know do!! He also communicates with your family...that is what it is all about. Do not have regrets over what you have done.....you are doing all that you could do at that time and if you can do more now...then go for it!!!

  23. Courtney, praying for you and your mom and that sweet baby! God love him! You are such a blessing to him as I know he is to you! Love, Jenifer

  24. Another first-time poster (found your blog from Patrice, and I found hers from I can't even remember anymore...) - yes, if Tripp were my boy, he'd be getting anything he wants too! Spoil that boy rotten! He deserves every single nice thing that could possibly come his way (and so do you!).

    If you'd like another random internet stranger's opinion, I say if you think therapy would improve his quality of life and he'd enjoy it, then go for it. If you think he needs it just because he's "special needs" or you think it would make him unhappy, then forget it.

    My middle child had therapy for a while, and while he didn't get official speech therapy (just missed the cut-off) the OT did give us some ideas, one of which I think you could adapt for Tripp - could you put a raised picture of the character on the DVD/CD case, so he could feel which one is which?

  25. Have you ever given a bath where you just used warm or cool water-nothing added, to see how he reacts? I think I have read here and on other EB blogs about using salt in the water...I know how it feels to get salt on a cut, I can't imagine how it would feel to a child with EB. Can't something else be used? Or just use a stream of water to flush away the bacteria? Do you think that is what bothers him at bath even, the products you have to put into the water, or is it some other part of the process. I feel so bad for him( and you!) having to go through this horrible process all the time. Try something different if you can....maybe you've tried everything....I just wish I could help!

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  27. Hi Courtney - I first want to say that I think you are doing an amazing job as Mommy. Tripp is indeed one blessed little boy (and you are one blessed woman to have such a handsome ham on your hands!). I've been following your blog for a while now (I guess you could say I'm a become a bit of an EB stalker since Jonah - a friend of a friend - was born). I work as a TA in a special needs classroom, and I know that there are several good devices out there that help non-verbal kids communicate. I've personally worked with touch boards and an app for ipod/ipad that's really great, but I know those might be difficult for Tripp to navigate. I agree with an earlier comment, and there has to be a raised-picture format out there, because there are so many kids with needs in that area. If the OT can't help you find what you need, try checking with some local special needs teachers - they should have some catalog resources that could help you out! Just thought I'd throw that out there! My prayers are with you guys!

  28. My heart goes out to your little son and you. I can only imagine the suffering he endures and the feelings you have as you try to alleviate it. I'm glad you have a visiting nurse now and she was so successful with the blood draw.

    I wish I could offer you some kind of magical advice to help with bath time, but I'm sure you've tried everything.

    Could your son ever go in a jacuzzi set at a safe temperature and just let the bubbles wash him?

    His little leg looks excrutiating and I know you said his bottom is bad, too. Surely with so many medications available, someone could find something to give you that could be used as a topical numbing medicine to offer him some relief?

    I will pray for you and Tripp, that he find relief from his pain and continue to find little joys in his life to make him smile, and for you, to have strength, inside and out, because I can see how much energy it takes for you to be such a great mother.

  29. Thanks for the update. Tripp's pain must be beyond our imaginations. I think that he should get anything he wants.

    I think that you are the most amazing person and the bravest and most loving mother! I am praying for Tripp and you.

  30. I am sooooo sorry that all of you have to go through this. My son is fourteen yrs and fourteen years post heart transplant. He has been in the hospital two months waiting on second heart transplant. He deals with chronic pain every day from arthritis called ankylosing spondillitis, major cramping from malnourishment due to protein losing enteropathy(PLE). They replace what they can which also includes his immune system (hypogamm-not genetic)with IVIG. They say it is like trying to fill a bucket when the hole keeps getting bigger. Austin usually gets albumin at least twice in a week and IVIG every Friday. I can definitely guess how stressed, worried, live in moment, etc your family probably feels. I feel completely blessed and thankful for my son. I have treasured all our moments together whatever the emotion at the time. AND I do NOT think to far into future or I would stay depressed(I like to call it "partial denial". I know all the risks and tba after htx it could go bad fast due to all medical problems. I don't dwell on that. I am a fighter and my son has been a fighter since the day he was born. So keep fighting, support each, vent when you need to, love each other, keep the faith and take one day at a time(some times that might be hourly or minute by minute). Praying for your family!!!!!

  31. I recently started following your blog and have to say what an inspiration you & your little man are! I have a son with special needs, but we have never been through near what you are both going through. Thank you for being so real and sharing your and Tripp's journey with the rest of us. May the Lord continue to give you both a great sense of peace & joy amidst the trials you are dealing with.

    God bless,

  32. My heart is breaking for you and for Tripp. The love you have for each other is so special. As others have said, I hope you'll stop letting the enemy make you feel guilty about ANYTHING. You're obviously an incredible mother. I'm praying for you!

  33. God Bless you and your family. I pray for Tripp and your family. You are my hero.

  34. Courtney, I see your blog and it always makes me cry. I know about you and trip through mandy and michael and honestly at first didnt realize the severity of his condition. Its easier for me not to read this blog because knowing exactly how he is doing kills me. Maybe I feel like if I keep a distance, it wount hurt so much to watch you all in pain. I know that mandy is a rock and completely dedicated to you both and that she will be there through it all. I pray for you every day and hope that one day, I will get the honor of meeting you so I can hug you tight!
    Brenda Sison

  35. Hi Courtney-

    I am a long-time follower...too long to have not left an encouraging comment by now. I enjoy reading your blog and love the videos of Tripp the most! Thank you for the update!

    I RARELY have true moments where I FEEL God and know that he's talking to me or with me. It's probably my "second child, scatter-brained" nature, but also makes those times moe special when it happens. I couldn't sleep last night and while I was lying there, you and Tripp crossed my mind and wouldn't leave. I just hurt for you Courtney, I don't know how else to describe it. I know very little about what all is exactly going on in your life. Everything I know is through what you post. My heart just ached for you, for Tripp, your everyday battles, your personal life stress, and how all of that added up must make you want to scream. Plus, just how lonely you must feel somedays. I know your mama is there and a bigger help then I even know, but even surrounded by all of that...loneliness can still rear it's ugly head. I just want you to know that you guys cross my mind frequently, I pray for you frequently and that I admire you for everything that you are and are doing. For some reason the song Be Small Enough by Nichole Nordeman (sp?) came to my mind as I was thinking of you and just wanted to share that with you. Maybe you already know it, if not check it out if you have time. I just felt like I needed to share. Take care & thanks for sharing everything that you do on here!

  36. I dont have a blog, but I check up on you every now and then, I couldnt help to mention, but I sooooo see an angel on that open wound. I dont know if its already been mentioned above... The angel's are waiting..

  37. Hi Courtney, I just want to let you know how much I love to see Tripp's smile...warms my heart. God has you all wrapped around his arms...continue to follow His lead; He wants you all to hold each other close. God's love, your love and your family's love will help your sweet boy through whatever pain he is feeling. Tripp is staying strong for you because you stay strong for him. Sending much love & many prayers. ~Reb~