Tripp is doing well. He absolutely 100% rotten and we are starting to see that more and more everyday. BUT that's okay. He deserves to be rotten. He has started the "fake" cry (or in his sake, the "fake" noise from his trach). It is so funny. He doesn't even really want to sit in his chair anymore. And if we clap our hands like we are going to pick him up, he immediately stops fussing and starts smiling so hard he shakes. It's cute... but could possibly get old pretty fast if I have to carry him around all day. I've been waiting almost 11 months for him to reach up like he wants me to hold him... and now we will see how long it stays cute before I go crazy. Haha.
We have been trying to get out a little more. We went to LaCarreta with my parents and he was SO good. He sat in the high chair the entire time and played like a big boy. Except as soon as we got home, he was so dry in his trach that he was pretty close to turning blue again. We got home just in time. I love taking him out places, but he can't tolerate his HME, so he dries up so fast. And also, the idea of him getting an infection somewhere makes me totally freaked out. BUT, we also need some normalcy, too.
Tripp has been a little HAM lately. He's doing so many new things everyday and getting to be so much more fun. He loves his Jeep walker now and can push backwards in it. He shakes his head "yes" and "no" and shrugs his shoulders to say "I don't know?" Well, at least WE say that's what he means :). He is moving his lips up and down like he wants to talk, but nothing comes out. He is using his hands SO well and reaching and grabbing for everything in sight... including us. He LOVES to be outside and has gotten in his swing a few times this past week. Except we have to worry about the pollen here. It has been SO bad this year. I worry about his allergies but also something getting in his eyes and messing things up again.
His eyes have been doing really well. He still has the contact in and we are planning to take it out next week and either replace it with another one or leave it out if everything is healed. His ears have really been bothering him, though. He rubs at them constantly and is beating up his face again... it just started looking better. We are thinking about going ahead and letting the ENT put tubes in his ears. He has fluid in his ears and pretty much always has... and he will be prone to getting the fluid until about 4-5 years old she said. And it's not infected, so the antibiotics won't help. She said it's probably just causing a lot of pressure, which could be causing the pain. So I think I am going to see her again on Friday and let her check his ears again... and then we will decide from there. I DON'T want him to have to get put under anesthesia again... but I also don't want him to be in pain anymore either. And the good thing is that he won't have to be intubated because he already has the trach and they won't have to start and IV she said. AND I'm pretty sure it will be an outpatient surgery so he won't have to stay in the hospital unless there are any complications. So we will see...
Please say some special prayers for Jonah tonight. He caught a virus and has stopped eating well. He is losing weight and his blisters are looking worse because he's not taking in the nutrition he needs to grow and heal. I talked to Patrice today and my heart breaks for her. It's such a hard decision to have to make (a G-tube or not?). Please pray that she and her husband Matt will have the strength to deal with whatever comes along... G-tube or not. No one understands having this burden unless you've been there. It's such a tough decision to make because you want to do what's best for your baby... but when and how do you know what is really best? And how long do you wait? Patrice, I love you girl. You are such a wonderful Mommy and I know that whatever happens through all of this, you will do what you think is best for Jonah. I'm here if you need me!
My "family" at North Oaks Rehab hospital (where I used to work) sent me a gorgeous basket filled with all kinds of great things. And each person left me their own special little note. It was SO sweet and made me miss all of them so so much. Thank you, guys!! You totally made my week! I would not trade staying home with Tripp for one minute, but I miss all of you so much. Thank you for thinking of us and for all of your prayers!! Love you all!!
Here are some pics from the past week!