Saturday, August 21, 2010


It's been a busy week.  Tripp hasn't been the greatest he's ever been- just still junky with a constant runny nose and on and off low-grade temps.  We went to Dr. Defusco (pediatrician) on Wednesday.  He is really due his 15 mo. shots, but instead she did some wound cultures on some of his draining sores and we talked about nutrition- thank God.  So she pretty much said that he is "failure to thrive."  Which means he's not growing like he should be.  Which I knew- but still isn't easy to hear. 

 My frustration is- why hasn't anyone been more concerned about this until now??  It's not really Dr. Defusco's job, you know.  I've been trying to find a decent nutritionist for months now... and no one is interested in taking the time (yes, I admit- it takes A LOT of time).  But that's their job, right?  Well up until now I've been giving him the Pediasure because the dietician SWORE he was getting all the nutrition he needed with it.  Well, yeah sure... a NORMAL child might be getting all the nutrition he needs, but once again- Tripp is NOT NORMAL.  

Why haven't I had the chance to deal with it and do this myself before now??  Well, because I've pretty much been focused on keeping him alive- you know... trach issues, fever, wounds, corneal abrasions, contact changes, eye surgery, preventing infection... stuff like that.  So, sure the easy way was to trust the dietician and shove 5 meals of 120 calorie-vanilla MALT down his feeding tube.  Well, I'm done with that.  I took it upon myself to start blending his food.  Dr. Defusco totally agreed with this.  We sat down and realized that he was only getting about 720 calories a day and not nearly enough protein.  First of all, he uses most of his calories to breathe and TRY to heal... and the little bit of protein he's getting is surely not enough to grow and heal (not saying his sores would even heal with more protein, but at least they would have a chance).  It's going to take me a while to get this together and to be comfortable with it- but what I realized is that I can't hurt him in any way by doing this-  if anything he will be getting more calories than before.  

So I called Patrice, Jonah's mom.  She has been blending Jonah's meals for a while now and has beautifully organized spreadsheets that she sent to me.  I think it's cruel that we can't live closer to each other to be able to help each other out... but thanks again, Patrice. I don't know what I would have done without your organization skills :)  

So far, it's been going okay.  I'm still experimenting and trying different things... but I'll get the hang of it soon.  Right now, I am using a Magic Bullet to blend, but soon plan on purchasing a super duper Vitamix!!  That way I can blend just about anything.  Right now I'm doing a random mix of things like avacado, baby meats, steamed vegetables, yogurts, fruit, protein powder, aloe vera juice, barley green, flaxseed oil... anything nutritious, high-calorie, and high protein.  He doesn't have NEAR the belly-aches he was having before.  Now we will just have to see if he starts gaining a little more weight.  He was right at 20 lbs. on Wednesday and has been about the same weight for a few months.  I'm also able to get more calories in him in a day (still the 5 feedings, though... because he can't tolerate high volumes), so I am able to run just water in his feeding tube at night.  That's another thing... I was shoving so much Pediasure in him, by that the time I was finished feeding him, he was too full to flush with a bunch of water.  But he definitely needs a great amount of water because he's losing so much fluid through his wounds. 

Anyway, so that's where we are on the feeding stand point.  I should be getting the results of his wound cultures in by Monday.  I'm pretty sure there will be something there and that we are going to try and have to get through a whole round of antibiotics.  Especially since he's been running a little fever.  I think we just need to at least try and see if he can get through one round and see if that helps him at all.  If I can keep the probiotics in him... and this new diet, maybe we can fight the diarrhea to a point where it's somewhat tolerable.  

I've been in pretty much a "closet funk" lately, I think.  I just feel like the older he gets, the more he realizes that he's different.  Call me crazy if you want... but I think he knows that he "looks different" and that he can't talk and we can... and that he has to be wrapped up and we aren't.  It's tough.  And it's just getting harder to see other babies and to be around other children.  Not for my selfish reasons, but just because I hate that he has to endure all of this- all the pain, the sitting inside and not being able to enjoy things that normal kids can.  When I rock him... which is A LOT-  I just stare at him, not even being able to imagine how much pain he is really in.  I know he looks like the happiest little baby from his pictures and videos (and don't get me wrong- he's happy most of the time).. but that doesn't mean he's not in constant pain.  When I look at his little finger tips, and his toes... or the sores in his mouth and around his feeding tube (I could go on for days with the spots that hurt him)- it HURTS me so much.  And yes I'm strong, yes I can deal with it, yes I will survive-  but sometimes I really feel like I'm headed to a mental institution.  It weighs on you when you watch your child suffer every single day and you can't do a thing about it.  Yes, I have a lot of patience... but there are times when I literally want to punch my fist into the wall and say a million really bad words.  It's just something you can't even fathom unless you live it every single day.  Okay... I'll shut up.  

On a brighter note, I'm pretty sure my beautiful sister- Tripp's nanny- is coming down for a visit in September (maybe if I write this, she will feel really guilty and HAVE to come).  I am sooooooo excited.  She's only been gone since June, but I feel like it's been 2 years since I've seen her (we have an extremely close family)... She's in Minot, ND.  Yes... that is about 28 hours from here.  Not just a hop, skip, and a jump away.  So please, Nanny, if you're reading this.  Book a ticket, already :) Thanks, Uncle Mike... we miss you too, by the way. 

Oh yeah... and when we went to the pediatrician, she "re-scared" me about all of the things that start going around when the school year starts.  Sooo... if you are sick, if there's a 10% chance you could be sick, or if there's a 10% chance that you've been around someone that could be sick.... we love you, but please... kindly don't come see Tripp.   This is NOT something I like doing... but we need to be very cautious all the time and especially during school time- that he does not catch anything.  From chicken pox to just a cold.  Either could kill him-  yes that's harsh.... and yes it's the truth.  SO if you do come see Tripp- please make sure you're germ-free as can be- and don't forget to wash your hands :)  We are trying to teach him to "sign" this... so I don't have to keep reminding people :)

Well, that's it for now... sorry no pictures.  I'll try and do a "picture" post within the next few days.  
OH, and I got my book Bella's Blessings in today.  I've already read 3 chapters.  DID YOU BUY YOURS YET??  See the below post!!!




  1. Hi, I don't know you but follow your blog, Tripp is so cute & adorable!
    I see in your post you'd like to get a Vitamix Blender, about a $500.00 purchase.
    I would love to send some money towards the purchase. What is the best address to send a check?
    You can email me at

    I hope I encourage others to do the same and you'll have your blender in no time!

  2. Me please send me your address. My email is

    You are so strong. I am in awe of you, your husband and Tripp.

    Wendi Reimann Luke

  3. I have been reading your blog for awhile and I comment every now and then....

    You are such a strong Mama and I don't even know how you do it. Tripp has to be so strong too to have through all of this, but God has a plan!!

    Prayers that you all have a good week and that the foods you are blending provides good nutrition for Tripp!!!!!

  4. I love you, Courtney. I'm so glad to hear that his tummy is already feeling better. Jonah has done SO WELL and gained so much weight on the blended diet that his nutritionist has asked me to CUT BACK! He's jumped from the 25th percentile to almost the 75th. I so hope and pray that Tripp sees great growth and healing from this. I know you won't regret it. Please know that I'm hear for you whenever, however I can be. I'd be glad to help you with your Vitamix purchase too if you need it. You won't be sorry about that either. :) I don't know why you'd want to, but you can even make your own peanut butter. WHAT? Love you.

  5. Courtney,
    I just wanted to thank you for what you wrote tonight. I too have felt a lot of the emotions you mentioned and I'm happy to not be alone. EB can be such a lonely disease. I think a lot about the day Tripp and Daylon will play together! What a great moment that will be! EB will seem more like the norm, when there's two of them sitting side by side! Anyway, your story really moved me and I wanted to let you know you're not alone. I'm here with you and we are fighting together to keep our boys strong, so they can win the battle against JEB! I love you! Jennifer
    PS- Take good notes about Tripps new feeds! I'm gonna bug you for them in a few months when Daylon is ready to start eating again! :)

  6. Hi Courtney: Thanks so much for the update. I always want to know how your little man is doing.
    I would like to help with the Vitamix too. I will get your address from Meg.
    Hang in there. I know that it isn't easy to care for an EB baby, but you can do it.
    Extra prayers for precious Tripp. Love you guys. Love Leah's Nana

  7. Courtney,

    The emotional pain you are experiencing really comes through in your last post -- as does the love you feel for Tripp.

    I am a 57-year-old grandma who follows your amazing blog. You and your husband are just .....I keep coming back to the word amazing, but I can't find another one that is appropriate. It is just AMAZING (sorry) that you and your family continue to put one foot in front of the other on a daily basis and devote yourselves to giving Tripp the best life you can. And this is while you are experiencing horrendous pain and suffering yourselves!

    I have not had the amount of suffering in my LIFETIME that you and your family experience daily! And you are still standing! And blogging! And loving Tripp.
    I don't think you realize what an amazing (there's that word again...I'm going to check my thesaurus for a better one when I finish this comment) person you are. I'm not going to use the word "strong" because I'm sure you are sick of hearing it. It goes beyond being just strong.

    Vicki in Tennessee

  8. Hi,
    I don't know how I happened upon your blog but I am glad I did. Your strength and courage is unbelievable and Tripp is so beautiful. I have a little one with a "minor" form of EB and I know how difficult that can sometimes be so I can only imagine and feel for what you do day in and day out. I agree with the above comment, the only word that comes to mind is Amazing. Hang in there.

  9. All I can say is I am amazed by you and he is a very lucky to have you in his life.

  10. Hi Courtney-

    I'd love to chip in on the Vitamix too (great idea, Jennemma!) My email is if you want to send me details on where to mail a check, how it should be made out, etc.

    I bet Tripp will be GREAT on the blended diet - from what I read on Patrice's blog, it's really helping Jonah! Will pray for that sweet boy to thrive and gain weight and get the nutrition he needs.

    Hope you have a good week - praying for you!

    Love from TX,

  11. I have got Bella's Blessing! I got mine in the mail last week :)

    I hope the new food blending routine helps Tripp. You are a good mom for being so strict with visitors.

  12. Hey Courtney ~ I was sitting in bed last night praying for Tripp and for a good outcome of his new blended diet and thought I want to donate toward this vitamixer thing you speak of. Then I sign on and low and behold Jennemma was thinking the same thing!! If you could email me @ the information (address, who to make check payable to, etc) I would be HONORED to send you some money. To be able to help out in some small way would make my day. You are an astounding (another word for amazing :) ) woman. I hope you have all the success that Patrice has had with Jonah as far as blending foods. I'm so glad you all have each other in the EB world to lean on along with us prayer warriors out here in blog land. Continuing to pray for Tripp.

    Lindsey in MI

  13. So glad to read the new post, and I agree that Patrice is VERY organized! :) I'm glad she was able to help you out with the spreadsheets. I love hearing about your day, even when Tripp isn't doing as well. It gives me the "right" things to pray for. This week, nutrition and weight gain!

  14. Courtney,

    I have been following your blog, but haven't commented lately. You are such an inspiration; I hope you know that. The love you have for little Tripp is just the best demonstration for me of how Christ loves us. Thank you for sharing your journey with us all. I cannot imagine what it's like. I'm continuing to pray for Tripp and your family. I will also pray for peace for you as you process all the things your little guy goes through. Big hugs from Tripp's friends in California! :)

  15. I have been following your blog and praying for Tripp and your family. You are really an inspiration to me as a mother and I feel God has some amazing things in store for you.
    My oldest boy is a little over 2 and weighs only 22 lbs. When he was about one and a half he wasnt eating and wasnt gaining weight and I was afraid something was wrong with him. I found a nutritionist at Childrens Hospital in New Orleans named Mary Woods. She is AMAZING! She sat down with me and worked on a good food plan. She also recommened (and gave me samples) of Duocal. Its a powdered energy containing carbs and fat. It basically adds calories to whatever food you want to put it in. Yout can even add it to water and juice. It really helped him put on weight!
    Just thought this could help you... God Bless!

  16. Courtney,
    You are a wonderful and strong woman! I love seeing all the videos of Tripp, he is too cute. (Especially love him doing "muscles" with daddy). Your family is in my prayers. -JS

  17. Hey courtney I have been reading about your family and your gorgeous son Tripp, he really is a handsome little fella. I am a mum of an EB angel, losing my gorgeous boy last year and I miss him every second of the day. Reading this post I felt that someone understood what I felt when I used to hold my baby, I felt so sad for him and so sad that there was nothing I could do for him and that I didnt know how much pain he was in. I miss him more than anything and would do anything to have him back, but ultimately I would have done anything to stop his pain. Your doing great you really are I can tell you really are strong. I truly believe that we were chosen especially to be mums to our boys as we are strong and we could give them the love and care that they needed. Our boys are blessings in our lives and we are so lucky to have them, take care xxx

  18. Hi Courtney. This post is so moving to me. I have a little baby with EB as well. Although Jackson's is not as severe as Tripp's I feel your pain. Reading you talk about the feeling you have when you hold him is the same thing I go through. Another EB mom and I said to each other one day "no one really knows this pain". The pain of a mother watching her poor child hurt is the worst pain imaginable. Thank you for putting your feelings out there and making it real. So many people just don't know.
    After reading your post I came here to the comment section and once again started to cry. The amazing generosity of your readers moved me. How sweet of them to offer to help pay for the Vitamix. Take them up on it Momma! Our friend have a Vitamix and it is AWESOME!
    Tripp will be in my prayers and so will his amazing parents.

    Morissa Webb

  19. One more thing--reading Tim's book can be tearful. Tim is an amzing writer and make you feel like you are right there. Make sure to have plenty of Kleenex on hand :)