Wednesday, September 8, 2010


Dear God, 
As I lie here next to my little angel... I am overwhelmed with things to be thankful for.  I'm not even sure where to begin.  Thank you for Tripp's doctors.  Without them- he certainly would not be where he is today.  Thank you for giving them the knowledge and the capability to do the things that they do to keep my son alive.  Thank you for the fact that my son doesn't have problems with anesthesia- what in the world would we do then??  Thank you for the nursing staff at the hospital.  I truly feel "loved" and feel like my son is "loved" the minute we set foot into the hospital.  From the receptionists, to the nurses, respiratory therapists, anesthesiologists, and doctors- they all "know" us and they all treat us with such kindness and respect.  Thank you for my family and friends.  I can't imagine if I had to go through all of this without the constant love and support I get from them.  Thank you for a mother that jumps through hoops for me and my family.  And who would do anything in the world to make me just a tiny bit happier.  Thank you for my blog readers, some whom I've never even met... sometimes they are what keep me going.  Thank you for Geri, our "EB" nurse- who is not only my resource for everything.. but sometimes my "counselor":) Thank you for my fellow "EB parents"-who feel my pain and can relate to what I am going through. Thank you the ability to actually get out of bed each morning and continue to do what I have to do each day- because sometimes it's not easy.  Thank you for the patience to do a 30 minute diaper change, a 2 hour bathing process, or spend a day blending foods.  Thank you for the strength to hold my head up high and realize that feeling sorry for myself is a selfish waste of time.  Thank you for my son- who warms my heart and teaches me to cherish every second.  Is it easy to watch him go through this every day- NO.  But O, the rewards... I can't wait for the rewards he will receive in heaven. God, I know that you did not put disease into this world- that it was our own sins.  And I know that you are hurting just as much as we are seeing Tripp in pain.  That is why I am thankful- because even though we are the reason for all the horrible things in this world- You are the reason that there are GREAT people and GREAT hospitals, and GREAT things that come out of all this.  Thank you for my life... and the people in it.  I am blessed.  

Tripp's surgery was scheduled for 2:00pm.  We waited in Pre-op from 1:00-4:30 when they finally took him.  He was such an angel... and O MY the versed made him hilarious.  We got good news and bad news.  
Bad news:
Dr. Rodriguez (ENT) went in while he was already going to be under anesthesia and did a bronchoscope to "check out" his vocal cords (you know, the place that was swollen that caused him to have to get the tracheotomy).  Well see for yourself...

I'm not sure if you know what a "normal" airway looks like... but it's NOT LIKE THIS.  His vocal cords and epiglottis are all fused together into one big blister.  No, this is NOT good.  This means that if somehow the trach would get blocked or plugged at all- he would have NO other method of breathing.  Which we kind of knew... just didn't know it was that bad.  So the trach will not be coming out anytime soon... (which we also knew)... BUT we need extra prayers that the sore underneath the trach itself will not cause a blister to scar and block the trach- because that is his only means of an "airway." 

Good news:
Dr. Shah (corneal specialist) who did his surgery today, said that everything went really well.  He said the symblepharon ring fit very nicely and that he feels it will hold in place a lot longer than he initially thought.  He also said that there was a lot of granulation tissue (what was coming down in the corner of his eye).  Granulation tissue is the devil.... it spreads like wild fire.  Especially if you start "clipping" on it.  But he said that he trimmed most of it and gave him a steroid shot in his eyelid to try and "tame" it.  And then gave me some steroid and antibiotic drops to keep in his eyes.  

We made it home safe after a long and stressful day.  Tripp opened his eyes for about a minute total since surgery... so I haven't really been able to "see" what his eyes look like.  But overall, I think he is doing very well and the pain and swelling is expected.  He amazed us when we got home and Randy said "show me your muscles" and he (with his eyes closed) gave a grin and squeezed his arms like he was showing his muscles:) I'm telling you... he's superhuman.  I will try to let you know how he's doing tomorrow- even if it's just a short update.  But he is sleeping so I'll cut it short:) 

Thank you ALL more than I could ever express for all the support, thoughts, prayers, and love.  It keeps ME going- therefore keeps TRIPP going.  We truly, truly appreciate it.   I love you guys.  
I'll leave you with some pictures from today's surgery...  

In Pre-op before versed

Pre-op... after versed. 


Rocking with Grammy in Recovery. 



  1. Court,
    Once again you amaze me! All today, as I have been praying for Tripp and thinking of ya'll, I have been thinking of how I couldn't imagine possessing the strength you and all the other EB parents have. I know that God is in control of everything. I have also been thinking today about some of your EB parent friends. I have clicked on their stories from your page and as I read them my heart just breaks. I read Jonah's parents story and oh my goodness. I thank God for their FAITH. Anyway I do have a point to all this. While reading your last entry, it really hit me when I read, "God, I know that you did not put disease into this world- that it was our own sins. And I know that you are hurting just as much as we are seeing Tripp in pain.". THANK YOU so much for posting that. I NEEDED to hear that. I have found myself questioning God these last several days as I have read the stories of these precious EB babies. You are an incredible mommy who sees the positive even in difficult situations. Again, Tripp is so lucky to have you as his mommy! Still praying for a speedy recovery for him and a good night's rest for you and Randy.

  2. Praying for that sweet sweet boy, Courtney! And praying for you and Randy as well. I wish I had some really great words to say that would make all this better. Just know that we're praying all the way from TX!


    PS - hope things are drier in LA - we got DRENCHED today!!

  3. So glad to read the surgery went well! Looking forward to seeing your sweet boy laughing and doing "tricks" again!
    love and hugs

  4. Courtney, Randy and Tripp
    I read your blog everyday checking updates on Tripp and today your prayer has really brought tears to my eyes. I am a mum of a beautiful EB angel who I devastatingly lost in December 2009 and I read your prayer and thought about everything you said. I too have so much to be thankful for, my mum, dad, brother and sister and the rest of my huge family have been the best support that I could ask for but for me as well as you, the most amazing support was my gorgeous boy. You have a tough time with him but he makes it all so worth it and gives you the strength to get through it, same as my baby boy. You are doing such an amazing job and so is Tripp. The ability that our boys have to keep on smiling is truly amazing and I believe that we were chosen specially to be mums to these lovely boys as we could be there for them and love them like they need. They taught us how to look after them without their strength we couldnt do it. Tripp is showing so much strength now and I think about him all the time. My baby was just 14 mths when we lost him and he made such a mark in a such a terribly short time. We are all thinking of Tripp every day from London, UK, you are all in our thoughts and we are sending you all the love that we can, you do an amazing job Courtney I am sure he is so very proud of him mummy, as you are of him.
    Much love xxxx

  5. Dear God, thank you for Courtney who so lovingly and patiently takes care of your angel here on earth! You chose the most perfect mother for him. She does an amazing job!! Amen

    Tripp's Grammy

  6. Hi Courtney,

    I just want you to know that your family is in my prayers, especially little Tripp. I love your son a whole lot even though I've never met him. You are SO strong. I really admire your courage. My heart breaks to see Tripp in this state. My eyes started to well up with tears as I was reading this post.

    Remember, Tripp was fearfully and wonderfully made. So many people love him. Thank you for this blog so I can see updates of Tripp.

    Know that strangers, like me, unite with you.

    In Christ,
    Joni (from Sunny Singapore!!)

  7. Hi Courtney: Thank God everything went so well. I had to check first thing this morning to see how you are all doing. You truly amaze me. I know how hard it is and you are really something else. I admire all the EB parents out there.
    When Tripp wakes up and starts feeling like his old self, give him a great big kiss for me. Love you guys and I am so relieved!!!
    Love Leah's Nana

  8. oh, I have so been thinking of this little man and your family. You guys have weighed very heavy on my heart and I've said many, MANY prayers on your behalf. So glad the surgery is over with and I'll continue to pray for his airway issues.

  9. Courtney,
    I am so glad that Tripp's eye surgery went well yesterday. Bless his heart that he has to go through so much more than any person, especially a child, ever should. I cannot imagine smiling when in pain from blisters/sores that EB causes him to have. I am amazed at him for being happy and smiley in every picture. I know I would not be. And I know I wouldn't be able to be as positive as you are either. You are both amazing people!

    Prayers coming your way<><
    Julie B.

  10. Courtney,

    I read your blog this morning and all I could think of was the phrase, "A child shall lead them." Tripp has certainly done that and will continue to inspire us all with his tenacity and personality. As you know, you are witness to a daily miracle while your son captures the heart of so many of us as we are forced to confront our own humanity. It's obvious that you and Randy are doing a great job under very stressful circumstances. All of you are in our prayers!

  11. Yay Tripp, i knew you could do it!!! I said such a long prayer for you last night that i fell asleep! Thank You God for babies like Tripp that teach this world to be thankful. Thank you for mommies like Courtney that are so unselfish and take such good care of
    Tripp. Thank you for grammies like Anita that raised courtney to be so unselfish and that would do anything for her family. But most of all Thank you God for putting courtney in my life and for all the memories past, present, and future. Tripp has been such a life changer for me and i know he is part angel. It is such an honor to know a piece of heaven here on earth. Amen

  12. Courtney: Read your blog daily...want you to know how much Tripp and you and Randy, are prayed for and loved.

    We are friends of Bella's (the Ringgold's)

    Adrienne and Lee Sandusky
    Huntington Beach, CA

  13. Hey Courtney,
    We are sooo glad that the surgery went well. So sorry to hear about his airway being soo bad. We will continue to pray for his recovery and overall health!
    Lindy, Nathan, Nate, and Landen

  14. prayers....check and double check

    tripp with blanket in mouth pic making my day...check

    tripp doing show me your muscles with eyes closed melting my heart..check

    me wanting to be like courtney when i grow up...check!

    I just wanna say thank you for keeping this blog up and taking time, amidst all that you always have going on, to let us all in on your lives. It has and does change me, and I am forever grateful.

  15. Bless you for all you do for your amazing son! If all of the women in this world were half the mother/caregiver you are, we'd live in such a greater place!! You inspire me to love and care for my own children.

  16. He is a miracle! Praying for Tripp and his entire family. I am in total awe of everything you do on a daily basis for your sweet angel. He is lucky to have such a great mama.

  17. You are an amazing woman - and God knew that or he would not have entrusted you with a spirit that he obviously loves so much. He has made it possible for Tripp to have the doctors, nurses, and hospital personnel, that love him so much. I check your blog everyday to see how your precious son is doing and also to see how you are doing. I am in awe of your courage and strength. Idaho prayers will continue to come your way for you, Tripp and Randy.

  18. I am just in awe of your attitude. Yes you are stressed and overwhelmed but still Thanking God. Amazing. Truly amazing. Only God could bring that joy to your heart. You AND Tripp's reward in heaven will be unimaginable. Seriously. You were given an angel because GOD knew you would appreciate him. That's my opinion! ;) Hugs to all of you.

  19. Here is a prayer that got me through the tough days.

    Do not look forward to what may happen tomorrow;the same Everlasting Father Who cares for you today will take care of you tomorrow, and every day. Either He will shield you from suffering, or He will give you unfailing strenth to bear it. Be at peace, then, and put aside all anxious thoughts and imaginations. - Saint Francis De Sales

    I think of you daily! Leslie

  20. Glad everything went well. Hope his eyes get better and stay well. He is such a strong little guy! As always he impresses me. He is a beautiful angel and I thank you for sharing him with us. Praying for him and your family :)
    Karen C.

  21. I was so happy to read this, I thought about him and prayed that everythind would go well yesterday. Continuing to pray for a good recovery.

  22. God will never give you anything you cant handle. Angels are around you and your family everyday. You have an amazing strength that every mother wishes they had, i know i do. My prayers go out to Tripp, such a strong little man! I continue to pray for a good recovery!

  23. Bless your boys little heart! Courtney, God has chosen so wisely when he called on you to be Tripps Momma! I have been praying today for your little angel and I am so glad to hear things went well with his eye! Have a good weekend snuggling your sweet baby!

  24. Wishing you and your family all the best.
    I read your blog and wish there was something I could do to help with Tripp's boo boo's. He is such a champ.
    I am praying for a speedy recovery.

  25. That's my girl! I knew you'd make it to this point from the very moment we found out about his EB. I knew, of course, that you would love this baby with all your heart, but I also knew that you would be able to find every ounce of goodness in this situation that has become your life. I'm so proud of you for all that you do for your son. Sometimes I read and hear your frustration and desparation and my heart breaks for you, then you waste no time bouncing right back with a renewed spirit. God is always there to lead you and its clear that you see that. I'm so thankful that God has granted you understanding beyond your years and the strength to keep on keepin on. I love you, your family, and of course that special angel of yours. Ya'll are always in my prayers.

  26. Court, I'm catching up on the last few days, and my breath just keeps catching in my throat. I love little Tripp so much.