Wednesday, March 23, 2011

Here it is... an update:)

I know, I know, I know!!  I'm a total slacker!! But really... sometimes even blogging once a week I feel like a broken record because it's always the same things (though I'm not complaining, because things could get worse).  I just don't want to bore you guys:)  My sweet angel is still fighting hard each day.  And as much as I can say that he's playing and being a little ham- he's also suffering, in pain, and struggling to breathe.  He really is the true definition of a fighter.  His breathing has been all over the place lately.  One day he is really junky and the next he's as dry as can be and struggling just to get air in.  He's still getting oxygen at night and I think that is helping him sleep a little better.  But during the day, he will stand up and play for a few minutes and then know when it's time to lay back in the rocker and get his "air."  Yesterday he hit his finger on a toy and I didn't even know until I saw a huge blood puddle on his table.  It looked like a murder scene.  And he didn't cry or even miss a beat.  That's how amazing he is. 

Starting the bath process is almost like a "walk down the plank."  He can see everything set up and he just "senses" when we are about to pick him up and put him on the table.  I think he feeds off of my anxiety too because it's so indescribable to watch.  Once he's out of the tub, he is okay.  Unless of course if he is tired and frustrated.  But most of the time, he is a little angel in the rocker to put his bandages back on.  Putting the bandages back on is actually one of the funnest times that we have with him.  Because he's so relieved to be out of the water, clean, and not wrapped up.  He does some of the cutest things at that time. 

His little bottom is so raw again.  It looked better for a while, and now it's back to being two big raw cheeks.  Every one of his sores at some point starts to look better and then takes a turn for the worse.  The sore around his feeding tube is the only one that is consistantly looking better with each dressing change.  But he is still starting to get more and more new blisters from the pressure of us lifting him and also from the weather getting hotter and hotter.  The sores around his neck are at their worst right now.  They are big, draining and get stuck to all of his bandages.  I've tried so many different ways to keep it from sticking, but he either pulls stuff out or the dressings move around.  The words and pictures on this blog say absolutely nothing about what goes on in this house and what my little boy goes through on a daily basis.  There is no way that words could express what I'm watching him go through each day.  Yes, he plays.  But he also copes with no eyesight and with extreme pain.  I just think about every time we pick him up and put pressure all over his sores.  Or hold him on our hip putting pressure on his bottom.  That has to hurt SO bad.  But he's used to it.  It's so sad that he's USED to being in that much pain. 

But when he stands up to play lately, breathing trouble or not, he's like THE master clown. It's hilarious and fills my heart with SO MUCH JOY to see him play. The way that he is coping with losing his vision is just incredible. His other senses are just taking control and he's functioning so well with his toys. However, he doesn't want to leave his little "comfort" zone because I think it makes him nervous that he isn't aware of his surroundings. He won't ride his car anymore or doesn't want to get in his walker. Probably for that reason. When he's in his little spot... he knows where he can walk, where his toys are, where we are, etc. So he's "comfortable." And that's all that matters. He doesn't really know what he's missing out on... only we do. He's happy with where he is and what he has now. He can say tons of words in sign language and we try to teach him new words all the time. But his head is harder than a brick floor, so it's only on his time. He plays us like a book and has us wrapped around his tiny raw fingers. It's hilarious actually sit with him and watch how he KNOWS how to play us... by being a little drama king and throwing a fit, we give in, then he immediately smiles the cutest smile in the world.

OH- I forgot to tell you the cutest thing he does... Grammy taught him how to "hold his breath"- don't get nervous... he's very smart. So when you say, "Don't you hold your breath!" (because everything has to be said that way for him to do anything cute- don't judge, I am very aware that I am creating a monster and I don't care), he takes his cute little pointer finger, and blindly tries to find the opening to his trach, then stops it up with his finger for probably less than a second (long enough to know he's doing something different) and then cracks up laughing at himself. It's so darn precious. And lately, he's not just smiling at us when he's happy... he's been giving real belly laughs, where you can hear noise from his trach.

 I'm open to your questions again...  or somethings in particular you would like me to blog about.  And thank you to everyone who send e-mails and messages checking in on us.  Sorry it took me so long.  
Hope everyone has a great week :)
And I hope this little cutie below makes you smile!












Love,
Photobucket

29 comments:

  1. Bless him...and you...and grammy. I don't comment very often, but please know that I think about ya'll all the time. I too worry when you don't update, but completely understand you are busy and have more important things (people/person/son/TRIPP!) that need your attention. :-) You are never a bore, so write your little heart away!

    One question is about the marrow transplant - is Tripp at all a candidate for that or is he too sick to go through it?

    Praying for all of you!

    Dana in MS

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  2. I have never ever seen a more Beautiful Angel than the little boy above!!! GOD BLESS ALL OF YOU!!!!!

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  3. Courtney, Thank you for sharing your precious little man with each of us. Our family and friends lift you all up in prayers and wish you the best and many happy memories. Tripp has truly touched so many lives. You Courtney have been a true advocate for EB and educated so many of us on EB. I personally had never heard of EB until I started reading your blogs. Thank you for sharing and educating us. I have been sharing Tripp and your story with my friends in Mobile and they are all praying and pulling for you all. Pray works in numbers... May god bless you and may you feel his loving arms around you daily....Love ya Courtney...
    Mrs. Pat

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  4. With all that he goes through he can be as spoiled as you want him to be! At least that is my opinion on it. Whatever brings him happiness is worth it in the end.
    We also pray for you everyday. As a Mom I can't imagine what you go through daily with your little guy. You make me want to be better. You and Jennifer. When I have a bad day with my boys I remember you guys and I try to remain grateful in the face of my trials.
    Thank you for sharing him with us!
    Love,
    Memory

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  5. Oh Courtney, your little man always makes me smile. I just love looking at his pictures. Keeping him in my prayers:)

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  6. I just LOVE seeing that precious little boy! I am so in awe of his strength and determination each and every day. It is so amazing! You guys are always in my thoughts and prayers. My daughter Alyvia (3) talks about Tripp all the time and always wants to see his updates. This is her nightly prayer:

    Now I lay me down to sleep, I pray the Lord my soul to keep, if I should die before I wake, I pray the Lord my soul to take. God bless all my family, all my friends, and Baby Tripp and all the other babies and help them to get healthy (she says helfy) and help me to be a good little girl.

    It is so sweet to hear her in her tiny little voice remember Tripp in her prayers.

    God Bless you. Thank you for sharing your sweet boy with all of us.

    Alysha Kale

    (Mommy to 4 kids at home and 1 in Heaven)

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  7. Poor little guy! I always look forward to your updates. I have no idea if it would help his bottom at all or if you could even use it, but I just found Boudroux (however you spell it) Butt Paste shampoo and body wash.
    Will continue to keep you guys in my prayers!

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  8. Dear Courtney -
    Our sons are close in age and I always think of Tripp as one of Max's friends. I wish we were closer so we could visit you all! Thanks for the update and don't worry a minute about spoiling him - he's mama's boy!
    I wanted to let you know that I am going to share your story with with my husband's doctor, who treats another blistering skin disease called PV. PV is an autoimmunine disease, so I don't know how that differs from a genetic disease, but Dr. Ahmed has done amazing things for PV patients. My husband suffered from blisters as well, which is why Tripp's story means really hits home.

    We pray for you all everynight - many blessings and much love to you all.
    -Heather in New Hampshire

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  9. Don't worry about frequent updates, even if they aren't the most cheerful. I often wonder about Tripp and I want to hear how he's doing. I pray for everything he's going through right now. Thank you for keeping all of us updated, even when it's really difficult.

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  10. Courtney, when I think of you and all you do, "slacker" would be the LAST word that would come to mind! The constant care and attention that Tripp needs is your priority, and we all know that. I do love seeing those pictures of your sweetheart when you can find time to give us an update, but know that you all are in my prayers always!

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  11. Somehow came across your blog and just wanted to say you are an incredible Mommy. Tripp is so lucky to have you! He sure has a powerful smile! No wonder you are wrapped his fingers!

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  12. Great pictures and update... he is a "rotten" boy!! I love his little stories and how he has you all wrapped around his sweet little finger! He is one smart cookie! It is brilliant that he has figured out his surrounding and knows just where his little body is safe to be! I hope you got my cd and are enjoying it~ Thanks so much for sharing Tripps trials with all of us. We are honored to be a part of such a special boys little life~ we love him and YOU! Hugs to you all~ Meme Diana

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  13. I was wandering if u could put one of those things on this trake so he can make sounds or learn to talk? He is so cute u are doing a great job with him!

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  14. I say spoil that baby as rotten as you can.. I could hear his little belly laugh in that picture..

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  15. I've never posted on here, but I've been following Tripp's story since he was born. My mom used to be his occupational therapist, and she told me about this blog. I always end up crying. It's unbelievable how strong little Tripp is, and you are such a good mommy. Y'all are always in my prayers.

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  16. OH I love the updates and the photos as usual! Is that your dad playing guitar for Tripp? SO awesome, little music man with a personal serenade! I am so thankful for the support you (and Tripp) have from your amazing parents! Tripp you inspire me little one, I know I am a better moma and person because of you and I thank you! I think of you all so much! I also have a sidenote, about the 5 senses. I remember teaching my kdg kids about the 5 senses. There was some article or book about when one of the senses (or more) is compromised. Like someone born blind or an animal losing it's hearing. They called it "SUPER senses" because the remaining senses increase in power. So essentially blind people can hear a pin drop, smell a particular perfume and know who it is, or "feel" they are near water even though they can't see it. I thought of this often when I read about Tripp and knew he'd be OK even if his eyes didn't get better. Whenever you wrote about little Tripp's eyes troubling him you soon mentioned how he was so drawn to music. I think his ears are his Super sense!

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  17. Thanks for the post. I start to worry when we don't hear from you for a while, but I totally understand that you are SO busy making sure that every minute of his life when awake is filled with love and laughter. Thank you for giving any time you have to filling us in on your days. He is so precious, and what else could you do but spoil that sweet little man absolutely rotten? Keep it up. Anything that brings him joy should be a daily event! Or hourly! Or every few minutes! Whatever it takes to get a smile. Praying for you and your family always.

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  18. Oh you sweet thing...thank you so much for the update. I don't know whether to laugh or cry, or both. Tripp has such a spirit in him and he inspires me so to be a better fighter in my own life. You all remain in my thoughts and my prayers!!!

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  19. Courtney, do you have any contact with the local person-led (eg not big huge charity) blind people's organisation? They will have some great ideas and resources on how to help Tripp to feel safe moving around, communicate, learn and the rest.

    It's always good to see an update from you and know that you and the little dude are still walking that road.

    Sending thoughts of strength and solidarity

    Becca

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  20. I absolutely 210% love you guys! Tripp you touch my heart in so many ways, and I think you are the strongest person I know, and incredibly cute! Always in our prayers!
    Love Shannon!

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  21. Sweeet little man - he just makes me smile. :) This has got to be the bravest kid I have ever seen!

    We're continuing to pray for him here in TX - and praying for you, too!

    Love,
    Laura

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  22. So happy to hear from you again! I know I don't comment much but I do read every time you post. He is a precious boy. He has the best smile I have ever seen and I pray a great healing over him and your family.
    Lord Jesus, we pray this morning for a healing for sweet baby Tripp. We know that you knew Tripp even before you formed in his mothers womb but your word states that if two or more of us come together in agreement that our prayers would be heard by your father. I also pray for Tripps awesome momma . I pray that she is richly rewarded for being a great woman of God. Lord Jesus, I pray all of this in your holy name. AMEN
    "I also tell you this: If two of you agree here on earth concerning anything you ask, my Father in heaven will do it for you" Matthew18:19.

    Love, Diane

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  23. Thank you for the update! I've been checking like crazy, knowing you don't have to time to blog everyday, but still wanting to see that cute little face. And what a cute little face it is!!!! Praying for you all!

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  24. His sweet face made me smile tonight! And his hands wrapped around that little cup, oh my goodness, so chubby and sweet.

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  25. Reading about Tripp's new breathing problems, I thought of a challenge my father faced on a trach with oxygen: The oxygen "dried out" the trachea and lungs and gave him horrible trouble with secretions.

    My mother found this device called a Thermovent (http://www.jrsmedical.com/TRACHEOSTOMY_CARE/TRACH_HUMIDIFICATION/SPX570016/product.aspx.

    It's small and just attaches to the Shiley. It adds heat and moisture to the lungs.

    Anyway, my mother has 30-40 of them and would be so happy to send them to Tripp, if you think that would help. Please e-mail me at mjw10065@gmail.com and we can mail them to you right away.

    I pray each day for you and your brave boy.

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  26. tripp is the sweetest! praying for y'all, and especially for the little man.

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  27. He is such a fighter!...and a cutie!
    Love you guys!

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  28. He has the most beautiful smile! What a troooper that little boy is. xoxo to you all.

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