Hey guys... sorry it's taken me so long to give an update. I have a A LOT going on in every aspect of life:) Thank you to everyone who sent me a message about an update. It's so nice to know that people care about us so much and are so sincere in wanting to know how Tripp is doing.
Since last Saturday, Tripp has had some much better days. He has stood up to play more in the last few days than he has probably in his whole life. I think it had a lot to do with me going up on his steroids and staying at a high dose for a while. He was having so much trouble breathing the week before last that I had to put him on the high dose. So I just enjoyed the heck out of my little man this week.
When he is feeling good, he is just hilarious. He's just plain rotten... there is no other word for it. When he's standing, we make a little "path" of baskets and ottomans so that he can hold on and walk sideways. Well, there cannot be a single toy on the top of his "pathway." If there is, you had better watch your head or your toes, because he's throwing it off. And he's got a good arm:) He only wants one toy at a time... and when he's finished with that toy, he will throw it down and reach for another one until we give him the one he wants. For someone who can't talk, he sure communicates with us well. And don't dare talk to him in a "normal" voice, or mistakenly "correct" him for slapping you in the face... because he will give you that pouty lip and get his feelings hurt so bad and your heart will break into a million pieces:) I love him so much.
Yesterday and today, I could tell that he wasn't feeling AS good... especially today. I started him on the Methadone for pain yesterday evening, and today I could tell he just wasn't the same. But it started this morning when he wasn't breathing well. He had to have oxygen because he was struggling so much. So I went back up on his steroids and started back with his breathing treatments. It's always something. He just can't catch a break. We have been doing every bath and every diaper change in the rocking chair. And both are so extremely painful for him (whether it's a good day or not) and that takes a toll on me mentally. I think it's hard for a lot of people to understand that even when Tripp has "good" days... there is still so much about those days that is so sad and so painful to watch.
But I am hoping that today was just a fluke and that he will continue having some "good days" next week. Please continue to keep him in your prayers. And please keep me in your prayers as well during these upcoming weeks. I've been having some really tough days and I've been having to deal with some very difficult people who do not (and never will) understand this situation. I need prayers for a peaceful and forgiving heart... because Lord knows it's not easy. You definitely find out a lot about people during the hardest times in life. I'm trying out a new motto: "They can't hurt you unless you let them." But I'm so thankful for the people in my life who ARE understanding, supportive, and sincere. And I'm sorry for slacking on the updates... it might be this way for a few more weeks while I get my life together but please bear with me.
Oh and yesterday my little sweetpea turned 20 months!! I can't believe it. I found out Tripp was not supposed to live to be a year old when he was about 2 months. So what a blessing it is that I've been able to spend 20 months with him. He is my favorite person in the whole entire world. I live and breathe for him... I hurt when he hurts and I smile when he smiles. There are so many emotions that I'm dealing with daily. I'm so sad for the cross that he is having to bear, but so grateful for all the lessons he has taught me about life and unconditional love.
Mommy loves you, little man.
And I know you've all been waiting, so here are a few videos from last week... When it looks like he is "waving"- don't be fooled-- he is totally saying, "Get out of my face," "No," or "Leave me alone."
Man, I love this kid.