Tuesday, December 1, 2009

Who Dat Say Gonna Beat 'Dem Saints....

Goooo Saints!!  Hey guys.  Things are going okay. Today was a little better than the last couple of days. He is still just so miserable from these stinkin sores in his mouth. So the latest is: I could not get back in touch with the dentist we saw at Children's hospital, so I took it upon myself to e-mail the dentist in Cincinnati yesterday. She e-mailed right back and gave me her cell to call her at home... she was SOO incredibly nice. She said she was going to try and get in touch with the dentist here and let me know something back. Meanwhile, Tripp's pediatrician was trying her best to help, too. So she got me in touch with another dentist from LSU that works at Children's hospital also. So to make a looooong story short... something is finally getting done. Tripp has another appointment with this new dentist here on Thursday, and then we will see where we need to go from there. If they talk together and decide his mouth is bad enough to take the teeth out, then we will have them taken out. The Cincinnati dentist said that she would recommend pulling the 4 top and 4 bottom but trying to cap the molars instead of pulling those. 'Sigh'... I know, poor kid. Just when we think that things are starting to get better, something else comes up. AND NOW, I think he might (might) be starting to have some problems with his eyes. Go freaken figure. Corneal abrasions is common in EB, and it seems like Tripp is trying them ALL out. Now I don't know for sure, but he's been doing some really weird things with his eyes. First of all, he is rubbing them like a maniac! They've been red in a few spots and really watery. Sometimes it seems like they get stuck shut and he can't open them, he gets really really fussy and it lasts like a few minutes, then he seems okay. But he's been doing that pretty often. So if it continues a lot, then I guess we will go ahead and see an eye doctor, too. But right now I am concerned about his mouth the most. Poor, poor baby. That's kind of the reason I haven't written too much lately. I didn't want every post to be negative and depressing. Because that's kinda been my mood the past few days. I just want his pain to go away. I can handle all that I need to do to take care of him with a smile on my face... but it's hard to smile seeing him in so much pain all the time. And I'm not a big believer of all kinds of medicine, but I'm still giving the Motrin and Tylenol rotated around the clock.

On the up-side, he is one AMAZING child. He's now grabbing his sippy cup and biting it with his teeth. I don't know HOW he is able to do that. I wish I could get a close up picture of the inside of his mouth. I put ice water in the sippy cup, so maybe it just feels good in his mouth. I don't think he's sucking, so I don't know if he's actually getting any water, but he likes biting it. And I love when he can get it to his mouth :)





And did I mention how much he LOVES his Daddy. I think that quality time really did him some good. When Daddy comes home from work, it's like he's a little puppy dog wagging his tail. He moves his whole little body. SO cute. He'll do it for Mommy occasionally... but I have to act EXTRA silly. All Daddy has to do is talk. Ha.




So his new changing table is pretty cool. Aunt Davi and Uncle Ricky brought it over Sunday. Aunt Davi went and got the table and Uncle Ricky finished it in ONE day. Pretty awesome, huh? It has a lazy susan on top so I can spin him from side to side. And it's tall enough so that I can store his supplies underneath and hide them so that his room can fit his toys again. Here's the new table.






Storage!! Yay!



This material is just temporary until I find one I really like and someone who can make me some little curtains to cover the bottom.  And I have to make some covers for the lazy susan so I can just take them off and wash them.







And here are a few more random pics..




Look, Ma... NO HANDS!!









This was his "had to get a shot present..." I really think he's thinking...
"THIS is what you call a PRESENT??  A scary, singing duck?"



He wasn't impressed... as always.



This is by far our favorite thing!!  He always has just ONE leg up in the air.
Whether it's just diaper change, or bath, or whatever.  Haha....








"Chicks Dig Scars" ... You bet they do buddy!!
(check out the monkey's band-aid!)





"He said, 'If you listen carefully to the voice of the LORD your God and do what is right in his eyes, if you pay attention to his commands and keep all his decrees, I will not bring on you any of the diseases I brought on the Egyptians, for I am the LORD, who heals you.'"
- Exodus 15:26

10 comments:

  1. LOL at Tripp and that duck!! So cute. I love the table too .... so innovative.
    For his eyes you might want to pick up some Refresh Liquigel drops. They're just a moisturizer so they won't irritate at all .... we know all about corneal abrasions here! And boy, they are NOT fun ... and a big source of pain.
    Hugs to you guys!!

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  2. Ha! I was going to tell you to call Meghann about his eyes! Boy - she's quick! I love the EB community!

    He is just so darn CUTE!! That table is fantastic! My daughter is EB free and I would have LOVED one of those as a changing table! That lazy susan would have saved me SO much time!

    Hope you can find some relief for him for his mouth soon!

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  3. I love the one leg in the air. He is just too darn cute! I hope his little eyes and mouth get to feeling better soon.

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  4. He is just soooo cute. Love the duck picture too. The look on his face is so priceless.
    I knew Meg would give you some tips about the eyes. Leah has had corneal problems too. Hang in there guys. It will get better. Prayers are still coming your way. Special prayers for the teeth and the eyes. Take care guys. Love Leah's Nana

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  5. Oh my Gosh... He is just the cutest... I love the band-aide on the monkey. The changing table is beautiful !!!!! And the leg in the air is a hoot. What a little character. I wish I could just give him kisses and make him all better.... Hope you have a great day Courtney- We check out your blog and Tripps site everyday and you are the most amazing mommy !!!! God bless... Carla

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  6. Courtney, I would like to thank you for keeping us all posted. I loved the videos as well as the pictures. The changing table is real nice & I'm sure will make things easier for you. You are the "Greatest Mom" so be very proud of yourself. When you feel like you need to get something off your chest do it girl that's what we are here for. I love you, Tripp, and Randy & the family. My prayers are constantly with all.

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  7. Courtney~WOW I would have loved one of those tables when we were doing colostomy changes with Noah (he had two) So neat! You are an amazing wife and mother I can not express that enough and I have never even me you! I love the new videos and pictures, what an angel! When you feel like you are at the end of your rope tie a knot and just hang on girl. I know you feel as if you are fighting hell with a water pistol and it is hard but please remember Sheldon and I are in constant prayer for you, Randy and Tripp. HERE are a few scripture we would read over Noah daily..I will add these to my daily prayer for Tripp they are from the bible and the Word of God is not a lie! So I as the scripture says where two or more are agree in his name it shall be done!

    Matthew 18:19 "And again I say to you that if two of you agree on earth concerning anything that they ask,it will be done for them by My Father in heaven"

    Jeremiah 30:17 "For I will restore health unto you, and I will heal your wounds, saith the Lord"

    Jeremiah 33:6 "Behold, I will bring you health and cure, and I will cure you and reveal unto you the abundance of peace and truth"

    Please if you do not mind send me your address, (kimharigel@yahoo.com or Kimberly Harigel on Facebook)I would love to send Tripp something. Mother asked Uncle Carey for it or I told her to but I am not sure if she ever did, LOL...Be encouraged you are doing a wonderful job as a mother and wife!

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  8. I wish I could take Tripp's pain away. It is not fair. Not fair at all. He has a special place in my heart even though I have never met him. Sending my support. Hugs to you.

    Carrie

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  9. Courtney,

    Just want to tell you again that your strength and courage as a mother is extremely admirable because I think it daily when I read your updates! What a wonderful family you have! And Tripp what an AMAZING Lil Man you are!

    I would love to make you some curtains for the changing table. I just made some for my living room and felt very accomplished afterward :) I have tons of the damask pattern fabric the same pattern on your blog but it is in black and cream not sure if it matches Tripps room or pick something online that I could order. Just let me know.

    Love and Prayers Always

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  10. Hi! I don't have any idea how I stumbled on your blog, but I'm glad I did! Tripp is adorable - look at those eyelashes! They should issue licenses with those! And the coolest changing table EVER award goes to you guys! Hope you don't mind if I follow along and offer whatever support I can from far away...

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