Sunday, November 15, 2009

Pouty Post

Hey there.  It's been a rough two days.  Tripp is so miserable that I just want to cry for him but I'm too exhausted to cry.  His secretions are constant... and I mean constant as in THEY NEVER GO AWAY.  He is so frustrated by it and so am I.  I am going to try and make an appointment with the dentist tomorrow if I can.. hopefully she will have an opening because I don't think I can go one more day feeling guilty for not doing something already.  Did I tell you he is getting molars??? YES, two molars at the bottom and I haven't even checked the top because I'm scared to.  How miserable must that be?  The four teeth at the top and the four at the bottom are rubbing so much that it looks like he has an extra lip at the top and bottom.  He's rubbing his face and ears so much that I'm now popping new blisters on his face and ears daily.  His ears are RAW.  He's getting Motrin and Tylenol rotated around the clock.  I don't know what else to do.  He hates the orajel and it's too big of an ordeal with him for it to only last 10 seconds.  THEN, when we bathed him when we got home Friday, he had a blister the size of about 4 quarters put together on his leg.  Don't know what it's from, but I know that it was HUGE (the biggest he's had),  it was FULL of fluid, and it hurt him when I popped it.  Tonight is bath night and I'm scared to see what it's going to look like.  I hate this for him.  I hate that every day is a struggle.  I hate not knowing when something is hurting and not being able to help him.  It's so hard to explain how I am feeling.  Which brings me to this....

I just want to share with you the "you know what" that I have to deal with BESIDES the fact that I have to care for my sick baby.  I got an e-mail from this random woman today that I don't even know.  I won't write exactly what it said because some of you would probably go crazy like I want to right now.  But it stated pretty much that
1.  She was disappointed that I had "bashed" the ER staff
2.  That I should not have verbalized what happened (I guess telling me how to write my blog)
3.  That she couldn't believe that the staff would not have reacted to the situation (calling me a liar)
4.  And that I needed to count my blessings
First of all, the only thing I wrote was on caringbride and it said that the ER nurse just stood there when Tripp wasn't breathing through his trach.  I stated nothing other than the truth.
Now, I know what you are thinking... Why waste your time even writing about this?? WELL, because if you know me, you know that I do not get over things quickly.  I feel like this made me SOOO furious that I needed to get it off of my chest.  Who are you to call me a liar when you weren't there?  And who are you to say that the nurses did what they were supposed to do when you weren't there? And if anyone counts their blessings... IT'S ME, because I thank GOD every night that my baby is still alive and still here for me to hold and love and kiss.  I don't deserve to receive an e-mail like that from someone who doesn't have a clue about me, our life, or what happened.  And I let her know that.  Why do people like that even read other people's blogs?  I guess they go around reading blogs and trying to decide how they can make people's lives miserable.  SO, on that note... I just want to say thank you to the people who follow our family, read our blog, and pray for my son.  And if you don't agree with everything I say or do, thank you for not verbalizing it to me because my life is hard enough... I don't need any added stress or sadness.  I love all of you for that.  You read what I have to say and you accept me for it whether you think it's wrong or right.  Thank you.

Sorry to have a "pouty post," but it's definitely just one of those days.  There is just no way to explain our lives to anyone.  I can't even leave my house at all.  Especially not after what happened, because I would never put anyone else in that situation.  It's hard enough for me to know and remember what to do when something happens and I've been with him every day for 6 months.  But to leave someone else here with him is another thing.  EB is scary enough, but to add a trach to that is pretty intimidating.   I would never forgive myself if I left and something happened.  Maybe one day I will feel different, but not yet.  I know I need to get out, I know I need time for myself... and one day I will think about myself, but not now.  Little man needs me here.  Sometimes, though, I just feel like I'm gonna lose it and then I'll be okay.  It's weird.  I guess God knows when I'm about to lose it and He carries me through it again.  That's the only thing I can think of.  Because it's such a strange feeling.  I want to cry all the time... and trust me- I AM A CRIER.  I used to cry at the drop of a hat (even if it wasn't my hat!) Now, I cry every now and then... like when my baby turns blue, but overall I feel like I've been so strong.  I just don't know how.  My Paw Paw passed away a few months before Tripp was born... I know he is watching over me.  He was such a strong and brave man... I bet he's helping Tripp be strong, too.  I wanted Tripp to meet him so bad and I miss him so much.  If you're reading, Paw Paw... thanks for all the help! I'm trying to be as strong as I can.

I love Tripp so much.  I love his big ole' eyes that can tell a story whether he is mad, sad, or happy as a clam!  I love his hands... as painful as I know his little raw fingers are, he grabs a hold to our fingers and never wants to let go.  I love his belly-button- it's just a little pink scar with a little indention, but it's so cute!  I love his feet... OH how I love his little "happy feet."  We call them "happy feet" because he wiggles them when he gets excited.  I love his new smile-  it is so cute when he wrinkles his nose and his eyes get real squinty.  I love his cheeks- bo-bo's, blood, snot, and all... I kiss them a total of about a million times a day.  I love his demeanor- sometimes he will let you kiss and love all over him and smile, but other times he will fuss when you even look at him- like "Lady, I need some alone time."  I LOVE HIM.  Every inch of him.  And I would move mountains to make him smile.

GOD BLESS all of you that love my baby.  Thank you, thank you, thank you.

Happy 6 Months, Big Boy!

Here's that smile I'm talking about.. haha! LOVE IT.
And this "soft sock" around his head is a temporary fix so that he doesn't rub his ears off.
By the way, this sock is clean and never been worn... ha


  1. Hey Courtney,
    I am sorry someone said those things. I read a lot of blogs and learn so much from others about their faith and strength thru whatever situation they have been dealt. Seems like at some point everyone gets attacked by some evil person. It just makes me so sad that people want to tear others down and upset them. I came over from Jonah's blog and have been following his story. I didn't know about EB before, but now that I do I greatly admire parents and children dealing with this. I can't imagine how hard the day to day is. Tripp is so cute! I will pray for him and you and your husband. Katherine

  2. Hey Courtney,

    I was gonna say that Jonah gets those big blisters (or similar sized ones on his feet) very often. What I do is coat half of a vaseline gauze (or whatever size you need) in Aquaphor, then a thick layer of Desitin, then antibiotic ointment and put the vaseline gauze over it underneath the layer of Transfer. It seems to help it heal faster and usually helps keep the skin intact long enough (for a week or so) to let the underneath part heal a little so it won't be so raw. If you try it (or maybe you already do) just make sure the vaseline gauze is really saturated so it doesn't dry out. And I usually drain that kind with suture scissors so I can get it drained better so it won't grow (even though it usually does come back a couple times but not so big). Oh man, those were some run-on sentences. Sorry you've had a rough couple days, I mean weeks, I mean months. LOVING the new smile, and I loved the video of him kicking his leg in his bed. So funny! Call me if you need anything or just want to vent (and say how you REALLY, REALLY feel). :) Give your mom, Randy, and especially Baby T my love.

  3. Hey,

    I found Tripp's CB site from Jonah's site and I want you to know that our family is praying for Tripp and your family. You have such a cute little boy! He is so handsome!

    God bless you,

    Hannah Skelly

  4. You can say whatever you want too...These sites are your place to write - if people don't like what you write, then they don't have to visit them...So - You Go Girl!!! You are an amazing mommy and such a strong women!!!

    PS- I found your site through Jonah's, and I am addicted to those cheeks of your handsome little boy!!

  5. Hey there,
    I found Tripp's site through Jonah's and wanted you to know that our family is also praying for Tripp and your family and I am so truly sorry some horrible person had to waste your time (and theirs) attacking you...People are ridiculous. Both you and Patrice are amazing mommies and an inspiration! Stay strong and thanks for sharing your cutie pie with us!

  6. hey there--I also found Tripp's site through Jonah's and just wanted to let you know, ITS YOUR BLOG! You have every right in the world to write whatever comes to your mind. Whether it be sad, funny,happy or venting. Us mommas have to have an outlet, and I think you deserve just that. Keep on keeping on! Praying for you guys daily.

  7. It's so awful that some people feel compelled to spew their mess and judge anyone. This is your blog; you write whatever you like and if they don't like they don't have to read it. Thank you you for even sharing your lil cutie patootey with us! And I love his new smile as well. My little girl has a similar scrunchy smile that makes me absolutely melt. Got you guys in my prayers.

  8. I hate people that go around and say nasty things to people when they know nothing about their experiences. I don't understand why they do that. I pray that you are able to brush it off and not let it bother you....they aren't worth your time.

    Praying you guys can get some rest and Tripp will begin to feel better very soon!

  9. Send someone out to Walgreens, or Walmart or CVS or what every pharmacy you have close by. Get something called Hyland Teething Tablets. They are little white all natural tablets that dissolve very quickly. They help with teething. My 7 year old is losing her baby teeth and getting adult teeth and she asks for them ALL THE TIME! And she never takes anything for pain, so if she asks for these, they must work! We gave them to her as a baby too and they never caused any problems with her EB and you can also dissolve them in a little bit of water and drop it in his mouth or rub it on his gums. I have friends who have used it for their kids and found it very effective too. I have tired them to see what they were like. They don't taste like much but dissolve quickly. here is the link to their web site:

    I hope they give Tripp (and you!) some relief!

  10. What a great new smile! (made me giggle out loud)

    Your stories are always filled with love, even your rants. Your trust in our Father comes shining through. Your daily dedication is far greater than most people reach in their lifetime. The person(?) who emailed you such a message needs to be prayed for. It is clearly from a person (again for lack of a better word) who doesn't know the power of words. I am so sorry you had to feel that on top of your already heightened emotions.

    If I could take away Tripp's pain and your sadness/fatigue/worry for even one day, what I wouldn't give.

  11. I can hear how much you love Trip in your every word. I know you will do anything for him to make him comfortable. I am sorry you get attitude from some people. Sad that they have to judge. Patrice got one of those too, remember? You just have to shine it off and not worry about it. People like that have NO IDEA what they are talking about because they have not walked in your shoes. The comment posted here that says you should pray for that person who sent it....neat to think and show that we should not jusdge them or be mad at them either. Again, hard to do I am sure with all you have to do just to care for your baby. Praying for relief for Tripp from the blisters and relief for you as you care for him! Love, Carol

  12. Oh, Courtney! I'm so sorry you've had to deal with such negativity and hatefulness.

    I can't tell you how many times I got emails from folks telling me that I should "just let Anthony go" and that transplant was "unnatural" and "against God's will". It was so hard to let go the hurt that those messages caused.

    Please know that I am praying for you! Tripp is beautiful. I love coming here and to his CB page to see your words (and his!) and to see the beautiful pictures.

    You are an awesome mom...PLEASE don't ever forget that!

  13. :) Love the new smile & praying hard for you guys. We also use the Teething Tablets & I don't know how they work, but we've gotten through many a meal w.our 17 month old b/c of them.

    I'm so sorry about the hurtful email - love and dedication like yours should not be called into question. You're better & stronger than that & I hope it will fade from your mind & heart quickly - the writer of that email doesn't deserve your energy!

    Sending prayers & love...

  14. OH Courtney, we do, we do, we do, we do love you and Tripp and Randy... You ARE so strong and SO loving. I pray for God to show us a miracle healing for EB. I pray that knowing that God can. I know He can. I'm sure you pray it too. But in the here and now, I pray you have strength to carry on. He will meet you in the valleys. You are very much loved in this world and in Heaven.

    God Bless you and yours.

  15. Courtney,
    You, Tripp and Randy have touched more lives in a week than most people will touch in a lifetime. You are an inspiration to me and most people that come in contact with you and your family, but we do know there is still evil in the world and that evil is going to try and destroy you and the things that are most important to you. You are one of the strongest individuals I will probably ever know in my lifetime. You keep doing what it takes for you, your precious baby and your family and don't let evil bring you down. You have the most beautiful baby and you are the most incredible mom I have the privilege of keep your chin up and continue doing what you do best and that is taking care of your most prized possession your beautiful son your angel from God....I Love you Lots...Aunt Sharon

  16. Some people are just horrible. I am sorry there are people like that who just want to bring other people down. I think every blogger has some bad seeds to contend with unfortunately. Still praying for Tripp. He is just too sweet for words. Love that scrunched smile!!!

  17. Okay Court....for real??? You are so deserving to say WHATEVER in the world you want to say. This is YOUR blog. I am so disappointed that someone would even consider for ONE second to say those things to you, much less ACTUALLY do it. That is someone with ZERO compassion and total ignorance. Tripp makes me smile so much in his pics and i couldn't stop laughing at him in the video with his little leg kicking around. Too much! Stay strong and keep having your "pouty posts" helps you stay strong. Love you!

  18. Unfortunately, people don't have anything better to do than bash other people. People who they don't even know, haven't walked a mile in their shoes, can't even for one minute understand what you are going through. Take the good and delete the bad. So many people are praying for all of you, always remember that. Keep fighting the fight. And it is OK to cry.

  19. Came to your blog from Jonah's. What a precious little boy. I think of how hard it is for me to have a newborn, who has just a few little problems, and I honest to god don't know how you do it every day. I read your blog and think...would I have that dedication if I was in your situation. You are a blessing to your son and your entire family. Ignore the hateful words that person said. Your love and strength show through in every sentence you post!