We are having more grouchy days. Jax is not pooping even with suppositories. So we have to give him liquid suppositories every day for now. That is so not good for the pooper. After a few years of a lot of suppositories and the pooper will be permanantly damaged. It happens to a lot of brain injury kids.
A couple of days ago I was pulling off his diaper and the steri strips from one site stuck to the diaper and I pulled the whole thing off. The incision wasn't fully closed. I had some covederm that the hospital had given me so I put that on. Its closing now but it will be a bigger scar.
Whatever, I swear if you give the kid water it would spray out of holes all in his poor little body. He's got scars all over his chest and abdomen. The kids has had 11 chest tubes in his short life, yes 11. And two nisson surgeries where they go through five holes (and of course they can't use the same scars as last time). And then the three scars from his 3 different heart surgeries.
Look at my beautiful boy reacting to his daddies whiskers. I'm very hopeful that he will someday laugh and play with toys, and even sit up.
I was being kind of cranky yesterday. I'm very used to people gawking at Jax, coming up and talking to him, saying how cute he is etc. And then you have the people who are quite blunt and say whats wrong with him, or is he going to live. I would rather people talk to me than stand and gawk though. I want to walk up to them and say, Uh you left your chin and tongue on the ground, you may want to pick them up. But this lady asked me today if he was going to be ok. I said he's doing good right now and we still have him. We live for the day, who knows what can happen in a week or a month, but for now he's ok. And then she said "My baby swallowed amniotic fluid and had to be on oxygen for a few days". I just smiled and nodded, its like, yeah, thats almost the same as him, ha.
No it really was ok, I welcome questions from people, its just funny how they think they can sympathize.
I'm really not a rude person... really.
9 comments:
He will laugh and he will play with his toys and he will sit.You have got to believe.I know you do.Some days are just like this.As for people.Let it roll off your shoulders.So not worth the frustration.My personal favorite is when they have asked me "What is the prognosis?"Seriously ... did you just basically ask me if my child is going to live or die?Ridiculous and rude.Have days like these Lacey.You just have to.Praying that tomorrow is a better day for little Jax.And you too.
Such a cute picture of Jaxson, he looks so happy with his daddy.
Oh yes we deal with the same looks, remarks, and comparisons. sometimes I handle it just fine and other times I want to let them have it.
Hang in there, praying tomorrow is a day full of joy.
I love the picture with Jax and his daddy.
OMG, I just adore this picture Lacey;)
UGH, that Lady...grrrrr! They have no clue what's so ever. It's so much easier said than done to brush of people sometimes. But some comments/stares can be really harsh! I'm starting to experience that now with Dillon & his NGTUBE & with all of the tape on his face. I swear, I never thought I'd be this kind of person...I swear, but I'm trying really hard to stay nice...LOL Of course, you have much more experience than I do!
You're allowed to be grouchy, we're all humane after all;) But look at your heart & all of the great things that you are doing...like the blankies, my goodness, your heart extends farther more than many people that I know;)
HUGS for tomorrow will be a better day!
I took Carson to a mall yesterday and a lady asked me about Carson's NG tube and I explained. She then said her son had a NG when he was a baby for a few weeks. I'm thinking to myself, a few weeks....newborn....don't you have it easy. But that would not have been the Christian thing to do. It wasn't that it bothered me that Carson has one, it bothered me that the way the lady was talking, it was like she was wanting our two children to compete in milestones. He was about the same age as Carson.
Oh well, life goes on and I will probably never see her again. LOL
I love Jaxson's expression with daddy. I see a very beautiful smile there. He is going to continue to amaze you....you just wait and see.
I'll be praying for poop! Poor little man! Gavin does not have this problem thankfully. What does Jax get through his tube for nourishment? Gavin was switched to something called Compleat Pediatric a few months ago and it has definitely helped with any poop issues. He's never had too much of a problem here, but he was more constipated before we switched to this formula. Isn't it crazy what us moms will talk about?!
I've also had frustruations with people staring at Gavin or saying something rude. I do appreciate it when people talk to us instead of staring, but some people just need classes on being polite! I guess it comes with the territory. We just need to develop really thick skin, but I don't like having to!
As for scars, Gavin is right there with Jaxson. Sometimes I look at other kids their age when they have their shirts off and get confused when I don't see any scars on them because I'm so used to seeing so many on Gavin's little body!
I'm planning on e-mailing you soon to answer a couple of ?'s that you left on your comments to us. Too much to type on here! Hope you have a great weekend and that Jaxson starts feeling better!
I think we all try to reach out and find a common thread just to show that we have some idea of understanding, but really we can never understand unless we fully walk in your shoes.
I'll never forget that someone once asked me if there was anything wrong with my daughter when I told them my son had Down syndrome. I was so dumbstruck for the moment and thought in my head, "there's nothing wrong with my son!" So I politely told her so.
I'm sure I have made stupid comments like that to people at times in my life...
I pray for Jaxon's body to heal. You guys are always in my thoughts, though we've never met before.
HAPPY VALENTINES DAY SWEET JAX & LACEY!! I sure hope that you had a good poopy, you poor thing:(
{{HUGS & KISSES!}}
I can't wait to add your button to my blog!! My name is Mandy and I got your blog from Suzie Smith. I am the brand new Salt Lake County Chapter Pres for the UDSF. I think your little one is soooo darling! I have a blog at luckynumber21.blogspot. I so understand what you're saying in the post. I don't know which is worse sometimes....and sometimes it just depends on my mood. I have to keep chanting they have no idea, they have no idea......
A few months ago we were waiting to get tubes with our little guy Gabe (5) and these parents were in the waiting room with us and they were absolutely falling apart. I thought oh been there done that. I thought he was having major surgery (which we have done)...oh NO...it was TUBES. You could have knocked me over with a feather!! Anyway, loved your blog! That Jaxson is a fighter for sure (and his family)!!
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