Sunday, June 12, 2011

Choose your own title :)

Man, oh, man.  Where to begin? 
Let's start negative, so we can end positive... shall we?
Tripp is back to his- sleeping all day, not wanting to play, infection bearing- self.  As I predicted, about 2-3 days after he got off of the antibiotics, he started slowly going downhill again.  And he didn't start feeling really bad until a few days ago.  Probably in the past 3 days, he's stood up to play about a total of 30-45 min.  He will try, and will play for a little bit, then just want to be back in the rocker. 
He's been sleeping late... like 2-3:00 in the afternoon late.  He always does that when he's sick and got something going on.  And with whatever he has going on... he has turned into a FUSSING MACHINE.  The child even fusses himself- I'm not kidding.  I guess fussing (the "hissing" noise he makes with his trach as he slaps at you) is his only way of defending himself and communicating with us.  And now that his eyesight is gone, he is sure getting good at "defending himself."  

His SAINT of a pediatrician, Dr. Defusco, offered (without me asking) to make another house call today... on a SUNDAY.  She's bringing all the stuff we need to draw blood and finally get some bloodwork done.  I think it's been since October (the last time we were in the hospital) since he's had bloodwork done.  So I'm anxious/nervous to see where he stands as far as being anemic, platelets (clotting), and infection is concerned.  And this is all IF we can get it drawn and IF he cooperates.  Dr. Defusco also called yesterday and started him on the same antibiotic that he was on a couple weeks ago.  She said that she feels in her gut, that if he's feeling so much better when he's on antibiotics, that we should keep giving them.  The only problem with that is the more he takes them, the better chance of the bug getting smart and being resistant to the antibiotic- which would mean the only other option to treat his infections would be IV antibiotics in the hospital.  But Dr. Defusco and I have always been on the same page from day one- Tripp's "quality of life" is more important than ANYTHING.  I will not magnify his pain or misery, just to prolong his life.  I want him to be happy and comfortable and as pain-free as possible.  And we will deal with running out of options when we get to that point (as I've known from the beginning that we will one day have to do).  
So I haven't used this blog as a means to vent on my personal issues, and I don't intend to start yet.  However, there have been so many questions about what's going on in my personal life that I feel obliged to let you in on the big details only (TRUST ME- You do not want to know the other details). Randy and I have been living apart and separated since last July and our divorce will be final this coming July (next month).  And ALL I will say is that things are NOT going well and have been difficult for everyone involved.  I would appreciate your prayers for understanding and forgiveness.  I will need them to get through this with just a little bit of sanity left so that I can continue to move forward.
I know that the statistics were in our favor with a special needs child, but I want to clarify that this was not something that was just given up on.  There were/are other obstacles than Tripp that were/are still involved.  Thank you for your prayers for us all.

On a different note, we had something interesting happen over here this week.  My grandma (my dad's mom) has an apartment that was added on to my parents house a few years ago so she could be close.  Well, during the "storm" we had this week, she was talking on her phone (her CORDED phone) when lightining struck through her roof, into her attic, and hit her phone line.  We didn't SEE it happen (obviously) but she said it jerked her arm and made the phone fly out of her hand.  She's okay- she just can't really move her arm.  My dad took her to the hospital and they ran every test imaginable for 2 days, while my mom and dad worked hard over here to get the hole in her roof fixed, along with her A/C, electricity, cable, etc... back up and running. 
Our luck, I know... Enter this house at your own risk!

So for a positive note....
Well, we got a whole new air condition unit put in at my mom's, I guess that's one positive thing.  Her old unit just wasn't keeping up (like a lot of units here in Louisiana do in the summer), but with Tripp here- that wasn't cutting it.  If we were comfortable, we knew he was sweating and miserable.  So now it is borderline FREEZING in here- and little man is finally comfortable and getting less new blisters a day.  We just bundle up in long-sleeves and robes. 

There's not too much more positive going on around here... except for all the wonderful people that I have in my life that are getting me through all of these hard times.  I need happiness and sanity to make Tripp happy and comfortable.  And I am so lucky to have those people in my life who make me happy and who would do anything for Tripp and I :)
I will let you guys know what the doctor says and what the bloodwork results are.  
Thank you for your thoughts, prayers, letters, emails, and kind words! 
Once again, we are so blesssed.



  1. I'm so sorry! You are such a strong and amazing woman and mother! Thank you for sharing your life with us and keeping us up to date! I hope things get finalized quickly and with not too much more strife with your divorce. I'm so happy you guys have such a wonderful pediatrician. They are hard to find! Lots of love and hugs to you all! <3

  2. Will be anxious to hear from you and how things are going for Tripp. Thanks for sharing about your divorce not an easy thing to do, but just to let you know just this past Thursday I finalized my divorce with my ex. So I totally understand and will certainly be praying for you, and sweet little baby Tripp we love so much.

  3. Hi Courtney! you dont know me from Adam-- I found you through Patrice, whom I dont know either. I had never heard of EB before you guys...anyway apparently God put a special place in my heart for EB kids. I am learning about EB (I am a nurse too) and making others in our profession aware of this horrible monster , in my own little corner of the world. I want to thanks you for sharing with us about your life. Tripp, you, Randy. Jonah and the families affected by EB are in my prayers every day. I think I have commented on your blog maybe twice.. I promise I am not a stalker-- just a lurker :-) anyway--no judgement calls from me--you are the only ones that know your lives. I am so thankfull for your wonderful dr who sacrifices to make housecalls--she sounds amazing. Anyway, Courtney, I just wanted you to know that I am out here in Tennessee praying for you all

  4. Courtney,
    you do not know me from Adam either! I found you (Tripp) through the broken road blog, and have been following Tripps story every since! You are and amazing woman, and Tripp is so lucky to have you!! I am sorry you are going through a divorce, I know how hard that is. Just remember to take it one day at a time...And always remember to take a few minutes for yourself (even if it is just a quick shower)!!!! Your family is in our thoughts and prayers!! (All the way in MN)

  5. Praying for you! I can't imagine how difficult it is to make some of the decisions about treating Tripp, but you are blessed to have such an awesome Dr. I hope that God comforts you and allows you to forgive. You and Tripp are such an inspiration <3

  6. I think you're amazing. Truly. I wish I could give you some respite, a vacation, something that would give you time to yourself...but I'm sure the only place you want to be is right beside your little boy. The way you live your life is inspirational. I will keep you in my prayers, and hope for happy days and years to follow.

  7. I'm so glad that you have such a wonderful Dr and terribly sorry to hear about your divorce. Just wanted to let you know that you, Tripp, and your family are always in my thoughts and prayers.

  8. Hi Courtney, not a day goes by since I've read your story a few weeks ago that I haven't thought and prayed for you and your little guy and the pain physically and emotionally you two are going through. I will continue to pray for you as you deal with the many decisions that you have to make on a daily basis. Lean on God and the great friends and family that He has surrounded you with for your strength and comfort. I wish there was something I could do to help sweet Tripp feel better, but I know if there was, you would have already done it. God bless you for all you have done and will do for little Tripp.

  9. I will be praying all goes well and smooth with your divorce. I know about troubled divorces! It took me 3 yrs to get a divorce! You are an amazing mom and are doing everything right for Tripp! Your an amazing person.

  10. Hi Courtney -
    I too am a lurker but not a stalker.

    THANK YOU for sharing your story. I can't begin to imagine the day to day heartbreak you have watching that beautiful little boy struggle with pain, communication, etc. You put me in check for feeling I've had an awful day because my 2.5 year old melted down in Old Navy today and pulled a whole shelf of shirts onto the floor as I dragged him out. As I read of your struggles you remind me you'd probably love to see Tripp pitch a fit in public. You'd probably love to do the "normal" things I did today without a thought.

    I'm not much of a prayer - but I think of you often (and check your blog all too often for updates) and hope that you continue to give Tripp WHATEVER he needs to be comfortable today. He deserves it and you deserve it.

    Lastly, you owe nobody explanations for your choices and personal life, please don't think we need to know what's going on. I KNOW what's going on, you are being the best mom you can be and that means different things to different people. Nobody should judge and if they do, you can't care!

    Rebecca in So. CA

  11. Dear Courtney,

    I don't know you but I stumbled on your blog a few months ago and have followed it ever since.
    I am so amazed by the strength you have and your ability to stay positive in dire circumstances.
    Like I said I don't know you, but oddly I have come to care so much for you and your situation. You are in my prayers daily.
    It breaks my heart that you have to go through divorce on top of all of this and I will continue to pray for you.
    Thank you for inspiring all of us and reminding us that we have a choice in how we handle life's challenges.

  12. Oh dearest Courtney-

    Thank you for sharing with us - not because we need to know all of your struggles, but because it helps us to know how to pray for you and sweet Tripp. I know we've never met but my family and I love you and Tripp and we are praying for you both each day. I wish I had something more I could offer to do, or another way we could help you!

    Praying tonight for you to have peace and strenght and healing as your divorce is finalized. Also praying that you and Dr. Defusco will have wisdom to know the best way to care for Tripp.

    Praying for sweet Tripp to be able to get through the blood draw and that whatever is going on in that sweet little body will leave him alone!

    All my kids love Tripp, but Jackson (my 7-yr old) has a special soft spot for him - he asks about Tripp almost every day.

    Sorry to ramble - just wanted to let you know that we love you and are praying for you and Tripp!

    Love from TX,

  13. Courtney, thoughts and prayers coming your way.

  14. Oh my dear. I came across this through a friend of mine on Facebook. As a Mom, a Gramma, I pray for you and Tripp. I am sorry to hear about your divorce and pray for guidance as you travel down that road in life. I, like many, do not know you and we will probably never meet. But that does not mean that I cannot keep a special place in my heart for you and Tripp. God be with you Courtney. I cannot even imagine what this is like to deal with. Maybe, I hope anyway, that it helps to know that you do have so many others 'out here' keeping you in our thoughts and prayers.

    "For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future." ~ Jeremiah 29:11

    Sending love from Perham, MN,
    Cindy Doll

  15. My thoughts and prayers with you and tripp like always ...I share your story with everyone I know.. xoxoxo from allentown pa <3

  16. Hi Courtney! Sorry it's been forever since dropping in. Thanks for sharing so much about so much with all the world. It takes an epic amount of courage to do that.

    I'm sorry to hear Tripp's been so fussy the past few days. I am heartened (is that right?) to hear about amazing Dr. Defusco still championing Tripp the way she always has. What an amazing woman (Kinda like ALL the women in Tripp's life).

    I hope the divorce process comes to somewhat of a close next month for you and your family so that your relationship with Randy can be less of a drain on you emotionally, physically, and spiritually. There are no magic words here to try to lessen the pain you are in on that front. Just know that you are loved exactly as you are and exactly as you aren't by your family, everyone here, and the good Lord above.

    We love you, and miss you, and are still so grateful for the precious time we got to spend with you and your beautiful family in the fall. We will never forget your hospitality (or your dad's beignets!)

    Lastly, thank you for sharing your faith. you are right, you are so blessed. Thank you for seeing those blessings all around despite the other noise. That is awesome work, right there. You are a powerful woman, Courtney, and our love and deepest respect rests with you always. - Tim and Angelique

  17. Courtney... You are amazing, and you have all our love and admiration as you endure thru troubled times. God Blessed Tripp with you and your family. I hope you are resting right next to your little man when he sleeps in~ hopefully the test results will shed some light and you can get Tripp playing a bit more! Hugs to your little guy from this Meme!

  18. Ahhh divorce when you have a child/children with the exhusband. Not easy, I know. When people get divorced because they let themselves get into a really bad place with eachother, it is impossible because the "hated" person has to be in your life for many years to come when you have a child. I want to so badly to never have to set eyes upon my exhusband again, but we have two children so he is constantly still in my life. Right now we (my husband and I) are trying to adopt through RR, and my exhusband is making a stink about it and causing problems. So even though we are divorced, he is still trying to exert control over my life. Divorce really sucks when you have a child from the marriage! I wish you luck with yours, and hope things get easier for you as time goes on. I know how hard bitter divorces are.

  19. I am sorry that Tripp has been sick. I hope that he can get to feeling better and be up and playing soon! I love the videos of him playing and need to see more!! I think of and pray for Tripp often. I will be waiting to hear what the dr has to say!
    I'm sorry about your divorce. I've been through one and it was hard but I wont say I know what you are going through because your situation is magnified because of the struggle with Tripp's health. You are a very strong woman to deal with your struggles with so much courage.

  20. Courtney, you are a soldier. Press on, girl!
    In Romans, Paul writes that our present sufferings are not worth comparing to the glory that awaits us in heaven.
    When I think of your sufferings, and Tripp's sufferings...goodness. Can you imagine that heaven is a place so incredible that it is not even worth comparing to the suffering?
    What an amazing truth. Let your mind be fixed on heaven each day Courtney; may God be near to you.

  21. Courtney,
    I am a former colleague of Patrice's and have been following your blog since she first posted about you not long after Tripp's birth. As you were posting about your wonderful mom, I couldn't help but reflect that you have taken after her in so many ways as evidenced by the love you demonstrate for your precious son. I am praying for your family through these tough personal times and sending much love from North Carolina.