On a bright note, NO ONE called Tripp a girl today. I'm not sure if I told you, but one time when we went out, two separate women called him a girl... and he had on a blue diaper and a orange shirt...with a blue blanket. Guess it's the eyelashes. However, we did have a few really nice old ladys that were very interested in "what was wrong with him." I really like when people ask questions, because the way I look at it, the more people ask and know, the more awareness it raises about EB. Plus, it's just nice to be able to talk about it sometimes, ya know? On our way out of the hospital my mom asked me, "Do you think we should go see the ENT again while we're here?" And right when she said that we passed Dr. Rodriguez at the coffee shop (that's the second time that's happened.) It was funny. So I got to talk to her a little while and tell her some things I needed to tell her. I'm still waiting for the rest of my custom trachs to come in so I can change his out. This one that's in now has been in about a week and a half... and I usually change them out once a week. OH YEAH... I forgot to tell you that the company Tripp gets all his trach and G-tube supplies from decides to tell me (when I called them to check on his trachs) that they are dropping Blue Cross insurance... (we have Blue Cross insurance.) They said that I had to find a new company by February 14th because that's when they were coming to pick up all his rental machines (suction, humidifier, feeding pump.) I wanted to say, "Well if I haven't found a new company by then, you better bring the cops with you because you aren't taking his stuff."But I decided I'd hold off on that. I found out another company around here carries the same supplies (because most around here don't do pediatrics... there's only a select few.) So they are just faxing everything over to the other company... I just hope it's all that easy.
I called Patrice yesterday. I was so so so nice to be able to talk to her. I feel like we know each other but we've never met. I know we will meet one day and I can't wait... and I know Tripp and Jonah will hit it off. They'll have TONS to talk about :) I wish we could go to Jonah's birthday party SO bad. I've looked into it.. and driving it would take us about 13 hours.... that can't happen. And flying is WAY too difficult with him right now, not to mention dangerous. So if anyone has a private plane and wants to fly us to North Carolina, we would really appreciate it. :) I'm just saying... If not, we will be surly there in spirit... and ONE DAY.. WE WILL MEET!! That's a promise! :)
I'm trying to be better about my posting, can you tell? And guess what? Randy's mom (MeMe) is coming in town for about a week and a half. And she will be staying with us at the house until Saturday, so maybe I'll leave the Grandmas with Tripp and get some stuff done around the house... like applying for SSI... something that I've been meaning to do since he was born. And, maybe I'll get to post some more and let you know how we are doing a little more often.
I had been trying to hold out on giving Tripp the Ibuprofen every 6 hours around the clock because I'm worried it might be messing with his insides... but it's not really working. It obviously just cuts the pain a little bit more. He's still on the steroids, so I wanted to see if just the steroids did the trick... but no, they don't. I hate giving him so much medicine, but what are my other options? To see him in pain... I don't like that option and I'm sure he doesn't either. Anyway, right now things are tolerable. He was SUCH a good boy today. Our friend, Bonnie let us use one of her children's car seats... it's the bigger kind but still can be rear facing, too. Because he grew out of his infant seat... I couldn't even buckle it. He loved his new seat. It's like he had freedom to move his arms. I swear I don't know how he's so good. But I am so so so so so thankful for that. Thank you God.