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Joey's having a great day!

Forum: Recurrent Miscarriage and Pregnancy Loss


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January 3rd, 2009, 01:14 PM
esparando para bebé's Avatar Proud Car Seat Technician
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This is from one of Traci's play rooms.

I went home last night to get some rest and spend time with Melanie (David stayed at his cousins house) and my mom stayed here. Today is a great day. joey was alert when I got here, about 8:30 AM. He grinned this huge smile that just lit my world. Since I got here, we've gone downstairs to the lobby (I can take him off unit, to the lobby and cafeteria now, and to the playroom on our floor as well), stopped by the gift shop (they sell miracle bands for $2 and I'm getting the child size ones for my kids and the adult size ones for my whole family), the cafeteria so mommy could have breakfast (first real meal in days and it tasted SO good). He sure loves riding in that wagon! I'll have to get pics of it, as well as a pic of his neck. Then we went back upstairs and after signing him back in and dropping off the wagon, we headed to the playroom. Joey is trying so HARD to crawl, and he was standing with the aid of the soft pin he gets to play in!

Ladies I cannot tell you just how precious all these things are to me. All week long the thought of him having cancer has been excruciatingly painful. Langerhans cell histiocytosis is bad enough though, and we are not out of the woods by any means but just when I felt I was trapped in this dark unending hole this little light came and I feel relieved.

I unfortunately no longer have the innocence of just letting my kids be kids, and not worrying about the small stuff. We have to be extra vigilant, extra careful, extra observant of even the slightest of runny noses, or of the kids having friends over because they might be sick. I live with the knowledge of what he has but no answer yet as to HOW BAD it is. Its treatable, yes, but from what I read it can be dangerous in babies more than older kids. That scares me. I know researching online is not the best choice but its how I understand, and I'd rather KNOW than be clueless when they come talk to me again.

I look forward to him having visitors and me taking him downstairs to hang out with his baby friends (and he has some from our playgroup). I need it and so does he. But I also wonder how people will react to ssing a baby wearing a face mask and me being so overprotective of him now.

You know, my mom kept telling me to let him self soothe, cry it out. I did some with my other 2 but with him I just couldn't. I couldn't understand what was so different that I felt it was dangerous but I wouldn't do it. I thank GOD I did not listen to my mom on this one. When he cries its harder for him to breath, he can't lay on his back because that makes it hard to breathe, from the pressure. He does great on his tummy and thats how he sleeps right now. I KNOW he'll be OK, I've had that peace in my heart, despite what the research tells me about chances and babies being the worst prognosis patients. We are at CHOC. We are EXACTLY where we are meant to be. Its in those quiet times that I just KNOW in my heart, this was part of the plan. I remember begging God that I wouldn't lose him when I was pg, and I believe at one point I said something about giving me one more child, a child that would be a testament. I should have been more specific, I meant a testament just by surviving my pregnancy not by this, but we will amke it through this, and Joey will come out the other end a WINNER and our MIRACLE.[/b]

Thanks to Jaidynsmum for my siggy!
Proud former foster parent to a teen. Waiting on our next call. Proud Aunt to 22.
Proud mommy to 7 angels. Survivor of 4 failed adoptions (5 kids)
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January 3rd, 2009, 05:46 PM
DawnN's Avatar Mega Super Mommy
Join Date: Aug 2006
Location: IL
Posts: 4,517
Sounds like mom's spirits are strong too. Thank you for sharing. Joey will indeed be a living example of God's goodness.
Married 8/11/90 ~ Terry Bechor m/c'd 11/26/03, Thomas A. III m/c'd 7/15/04,
Sarah E. born 6/24/05, Tabitha Zipporah m/c'd 4/?/06, Theodore David m/c'd 8/27/06,
Taylor Lynn m/c'd 2/07/07, Benjamin E. born 3/25/08, Catherine A. born 6/03/09

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