So I want to extend a HUGE thank you for all the prayers for a little bit of sleep and my sanity back. Since Sunday night, Tripp has somehow slept better than he EVER has. I don't know if it was that I was at my wits end and he knew it (doubt it), or that I am not running his feeding pump (maybe his stomach was hurting), or the new trach, who knows... so I'm just gonna toss it up to all those prayers. I am forever grateful. Will it continue? Don't know, but every hour of sleep I get is a blessing. We are of course still having a little trouble with the trach, but I don't know if those issues are fixable at this point. We just take one day at a time. Some days are better than others... and I thank God for all the days, good or bad. But it's totally amazing what a little sleep can do. The first day after I slept I felt like a truck hit me, guess my body wasn't used to getting that much sleep. But I'm starting to feel a bit more rested and I pray it continues to get better (my eye bags are still there, but I think it will take a few weeks of sleep to get them looking a little lighter.. ha).
Tripp amazes me more and more every day. I just don't know how he does it. He is still not doing everything an average 9 month old would be doing, but he is totally not as behind as I thought he would be. It's very surprising, actually. He is using his hands and arms great and pretty much up to par. He grabs at EVERYTHING and it goes straight to the mouth. From what I can see and count, he has about 16-17 teeth... unless there's any I can't see. Crazy, huh? And I'm pretty sure there's some more coming in because he's drooling like a maniac. His poor little fingers are still raw and bleed A LOT. He will cry for a few seconds when he hits one on a toy and it's starts bleeding, then he's fine. I know, like I said.... he's amazing. The strongest little boy I know. As far as his legs and feet, he's FINALLY starting to put a little pressure on his legs. Yesterday in his walker, he started pushing backwards a little!!! YAY! I was so psyched... And, O MY GOODNESS.... his smile- is so darn precious I can't even control myself. He's so tired of me kissing all over him. And he'll let you know, too. When he's had enough kisses and "in my face" time, if you get too close he will fuss. And by fuss I mean you can just tell in his face he would be fussing... we can't hear anything but the trach noise. Which is really sad. BUT just the past few days, he has started moving his mouth like he would be babbling. And this morning, I could not stop laughing because every time I would start to sing, he would move his mouth like he was trying to sing with me. SO SO cute. And lately, when he gets really excited, he opens his mouth really wide and squeezes onto whatever is in front of him and you can see all his little teeth.
Here are some pics from the past few weeks...
Tripp and MeMe
First time big boy could sit up at the doctor!!
I told him one more scoot and he was gonna be off that chair!
I made Tripp his own "business cards" (ha) so that every time we go to the hospital or the doctor's office and people ask about him, I can just hand them a card and they can learn more about Tripp and EB from my blog and caringbridge. I also put debra.org on there. Because I know we tell people all about him, but when they go home, they're probably just thinking, "Oh, remember that poor boy with the bad skin disease?" This way they can learn more about EB and maybe even help us spread awareness. The more people that know, the better, right?
Here are some videos of the past few days.... PLEASE excuse my singing. I am not a professional. But Tripp likes it and that's all that matters.. ha.
Tripp singing with Mommy...
Here is Tripp so so happy in his walker!
Don't mind my mother, she had a frog in her throat.
This is him smacking his lips... something he finally just started doing.
If you listen close, you can hear it over Mickey Mouse.
(It may be boring to you, but I was about to cry because he never moves his lips.)