Gosh, I didn't realize that it was already December 6 and I hadn't blogged since the 1st. I guess time flies when you're
having fun too busy to know what day it is :)
There hasn't really been much new going on. Tripp is about the same- good days and bad days. All we can do is embrace the good ones. Honestlly, right now, if it wasn't for his poor eyes and mouth, I think we could be okay. Both the eyes and the mouth are the saddest things. And for both, there is pretty much nothing we can do. Dr. Defusco is working on getting someone to help with his mouth- and that's a pretty hard task to take on. She's been our #1 advocate from day one. Love her! But the eyes- I think we are done. Other than steroid shots every few months, there's nothing left to do. And if you could see his eyes right now (like up close and personal)- they are bad. And it's really really sad.
But when I talked to Dr. Defusco last night, we discussed maybe TRYING to get him on some type of schedule. He's killing me with his "sleep all day, up all night" routine. She said that if I could get him up a little earlier in the morning (this would probably involve a lot of kicking and "would be" screaming) and then try my hardest to keep him up during the day (haha) that I could give him a small dose of melatonin to help him sleep at night. Now, I know all of you have heard me talk about my son and how what he says, goes. Well, I don't think that will ever change. But I'm willing to at least try for him and for me- so I'm not getting sick soon from sleep deprivation.
Also, we talked about getting him on a long-acting pain medicine instead of the morphine. That way I could give it to him once and it could work all through the day. Instead of giving the morphine, letting it wear off, then giving it again and trying to control his pain every 4 hours- which isn't working. This might help him (hopefully) to be able to function better throughout the day, instead of coming up and down off of his " drug highs." I just can't explain to you the amount of open wounds he has all over his body. And changing his diaper, changing his trach dressings, or doing a bath is DEVASTATING. And I will do anything, and give him whatever pain medicine he needs to make him as comfortable as possible.
On a brighter note, from what I hear... we are supposed to have a pretty good turnout for the "Trot for Tripp." I'm so excited that people are willing to participate and also that they are becoming aware of this disease. Since Tripp was born, I always said that it would be great if all of the EB families could all live close and in one state. But if that was the case, then I guess we couldn't spread the word across the counrty like we are doing now. As far as I know, Tripp is the only Junctional EB child in Louisiana (other than sweet little baby Owen, who passed away in the NICU months ago). And it makes sense because he is said to be 1 in 2 million. And it just makes me smile to know that so many people in this area, this state, and even in the country are starting to learn about EB. And it's taking one person at a time. Through blogs, by word of mouth, through fundraisers, email, facebook... it's amazing. And I'm so grateful for all of you who have been so supportive through all of this.
Oh, and I just found out that my awesome friend, Dianne (the one who is doing the fundraiser for Tripp) will be on the radio again tomorrow morning, so please tune in to listen to her! She will be on Kajun 107.1 at 8:15 am and Tangi 96.5 at 8:30. Thank you again, Dianne- for making all of this possible!!
I want to send out some thank-yous. And I know already that I am leaving many people out, and I'm sorry. I truly appreciate every little thing that is done for Tripp and I.
I want to thank all my great friends for another beautiful flower arrangement that you sent. It came just in time to be a beautiful centerpiece for Thanksgiving dinner.
Thanks Mrs. Lori Hess, Mrs. Brittany Navarre and to Maurepas 7th and 8th graders for the cards, stuffed animals, books, and the gift card (that the kids raised the money for themselves) that they sent to Tripp. He loves his rudolph and I very much enjoyed reading your cards and words of encougament. I cried a little, I'll have to admit :) You kids are amazing and so thoughtful to have done such a wonderful thing for us. I will keep your cards forever, so that one day Tripp can read your sweet words :)
Thanks to Theta Phi Alpha sorority at SLU in Hammond for the cards, book, and precious "Penguin pillow pet" that they sent for Tripp. These girls have been spreading the word about Tripp since they found out about him. They had a fudraiser to raise money for DebRA outside of the student union during EB awareness week. And they always do kind things for us, even if it's just to send me a nice email. Thanks again, girls.
And to all my lovely blog readers who have asked for our address and send special things for Tripp- books, puppets, music cards, etc. I am touched by each and every one of you and appreciate every gift, thought, prayer, or kind word. I am one lucky girl with a beautiful baby boy and a whole lot of great people who love him. Thank you all again.