Ok, I know I've been a total slacker, but here's my excuse... I typed a whole blog about 3 days ago, it was long... with an update, pictures, info on other EB kids- and when I went to publish it, the computer said error and it wasn't saved and I lost everything. It was terrible. I was ticked. SO, I will try now to start over...
Tripp was on 2 oral antibiotics for about 14 days earlier in the month... and that was the best 14 days of my life, no question. He played and played in his little comfort zone. Just walking side to side like a little crab. Snapping (putting his two fingers together and clicking with his tongue) and then bossing anyone who's in the room to snap, too. Shaking his little booty, playing his drum, learning more sign language. He was also eating more by mouth (pudding, soup, chocolate). Well, about 3 days after he finished the antibiotics (happens EVERY time)... he started going back downhill. Not wanting to sit up much, his mouth was hurting, and wanting us out of his face (well except to rock him).
But when he was feeling good... it was so good. And such therapy for me. It seems like when he's feeling good, it makes all the other little things (that I shouldn't even worry about) seem like they don't matter. Then when he feels bad again, it's like everything is magnified. But I can't keep him on antibiotics all the time, because then when he really needs them, he will be resistant and they won't work. But I have to say, even lately when he's been feeling yucky, he still tries to stand up and play like a little trooper. His eyes are taking a toll on him, I think. They are looking so much worse as far as the tissue growing over the eyeball. I'm really not sure how much he can see. You can definitely tell that each day gets a little worse. He's reaching for things that aren't there, and bringing things really close to be able to see them. And his depth-perception is off for sure. But he sure finds a way to get the toy he wants and know what to do with it.
This child has like a sixth sense for music and sound. I guess either because he can't speak and all he can do is listen to us talk and sing and play music... or the fact that I forget that he's almost 2 years old and he's smarter than I think:) But he can tap, clap, "snap," or bang his drum to any tune. And it's always right on target. Even if it's a song that i just started singing, he picks it right up. And then to watch him how he "bosses" us to snap when any type of music is playing... makes me think maybe I have a little musician or band director on my hands... haha. No but really, even if there's music playing or not, if he wants to "snap," eveyone in the room has to snap, too. And he will turn and look at each person, hold his arm out, and "snap" until you start snapping. And don't think that you can just stop unless he gives you permission! He's a bossy one. I don't know where he gets that from:)
So, while he was feeling good, I was a total slacker on pictures and video, too. But in my defense, I just ENJOYED him. Every single minute of him- without the camera stuck in his face! Though I do wish now that I had taken more video in case I ever forget what I little cutie he was in those 2 weeks! I took a few good pictures of his heart-stealing smile on one of those good days!! :)
He has been playing some... just not as much as he was. I'm pretty sure he has a little cold. There's been a lot of suctioning and he's had a runny nose. So maybe he just has to get past this little cold and then we can go back to playing more:) Thank you all for the prayers and support for my little man.
So there's something that's been weighing so heavy on my heart lately. And if I'm going to be honest, I really am not crazy about doing this kind of stuff on my blog... but I feel like it's important to ask you guys for a favor. Not for me, but for 2 kids who are battling EB alone, without a family. These two kids, Carson and Anton, have been on my mind a lot lately. I try and imagine Tripp living this life alone- with no family and no one to give him that close, undivided attention that he gets here from us. It literally makes me kind of sick to my stomach to think about Carson and Anton (and any other EB babies out there) living this horrible life of EB with no one to call family. There is a family in CA, the Cannells, who have committed to Carson. The only thing keeping Carson from being able to come to the states and be with his "new" family who wants to take care of him is "money." They are about $20,000 short. I know that seems like a lot, but I know that there are a lot of people who read this blog and who want to do something to help. Well I'm asking you to help this family bring Carson home. There are two sites available to donate for Carson. I will list them below. And Patrice has created a blogsite for little cutie Anton. I think there is also a family who is thinking about taking Anton (if you haven't read his story, please visit his site below and do so... it's so heartbreaking). And I believe the only thing stopping this family is also the financial issues. So please... even if it's $5.00- help these little boys be united with a loving family who is willing to care for them and give them the love they need to survive this horrible disease. I know it's hard for anyone who does not have to see this disease and what it does to these children on a daily basis... but for me- it breaks my heart knowing that they are sitting in a hospital bed or an orphanage- only with caretakers who come daily to take care of them, and then leave and go home to their own children and family. These kids deserve a great home and so much love and I hate that money is the only thing holding them back. So like I said, I don't like doing this, but if you can, please pitch in and help Carson and Anton. Aren't they so cute??