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Tuesday, November 17, 2009

Living Jaxsons life to the fullest

I've had a lot of people ask me about keeping Jax inside during the winter months, or anytime for that matter. I know I've said it before, but I thought I would give my personal take on the subject.
I've said before that I'm not going to live my life (or Jaxsons) inside the house all the time. Thats no way to live, expecially if you don't know how long you will have him. He goes where we go. I am grateful for my nurse so I can run errands and not have to take him out in the cold. But we go to parties, Jax comes too. You have to remember that they are not going to catch stuff just from being in the store. Someone has to touch him, or cough right on him for him to catch it. Germs don't sit and float around in the air, they die seconds after being coughed up. He doesn't touch the cart because he sits in his infant carrier. I have actually found the he does better not being cooped up in the house all the time. And if you keep them inside all the time, as soon as you take them out they will catch everything. Expecially if when you take them out just to go to doctors appointments. Hello, those places are the breeding grounds for germs. And with brothers going to school, we are doomed at germs coming home. The boys wash their hands immediately after walking in the door. But if they catch something at school, its coming home whether we like it or not. We do a lot of stuff as a family, Jax is a member of that family. He's been to Disneyland 4 times already. So my philosophy...live life to the fullest, you never know when it can change in an instant.
The funny thing is, that actually happened to us. We went to California, Jax was 4 months old. 2 days after coming home, Jax went into the hospital. After a week of slowly getting worse, thats when he ended up on the ventilator with pnemonia, starting our 4 month PICU stay. I'm glad we got that trip in. You know Jaxson has a lot of factors that make him suseptible. Heart disease, horrible lung disease, neurological damage, and now a trach that is direct access right to the lungs. Don't get me wrong, we are very careful with him. But also having a great time with him as well! Anyway, this is just personal opinion.

Last minute birthday invite. Seriously, if you live close to us we'd love to see you. And there's going to be some serious cuteness going on here too!


31 comments:

  1. Oooohhh my gosh that kid just gets cuter and cuter.
    I could just EAT. HIM. UP!!!
    Wish we lived closer, but we'll be there in spirit to celebrate 4 amazing years with Jaxson!
    Don't think you'd welcome my germy, crusty, croupy nastiness anyway :(

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  2. You hit the nail on the head when you said that if you keep kids in all the time the moment you do take them out they will catch everything. I am a true believer of that, besides being exposed to a bit of germs only builds their immune system! It's great that Jax gets to do everything and experience life the way any child should.
    Just look at those pictures that is some serious cuteness!!! I especially love love the last one, he has such a beautiful smile.
    I hope Jax has a really great birthday, will be thinking of him :)

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  3. Look at your boy.Your beautiful boy.I love that smile he has as he's nuzzling with dad.And I love the invitations ... so wish I could be there.Love you guys and love your take on life ... your right on with it and we have dropped out from going to church and other then that we have decided to take her out in her stroller or I carry her in the front carrier and we go and live life.

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  4. I agree there is no point staying inside all the time - you have other kids so the germs are coming inside anyway! Might as well go out and have some fun - better for everyone that way.

    I so wish I could come to the party!

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  5. Have a great party! Looking forward to pics.
    ---Jen

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  6. Lacy I have to say this post made me tear up a little. Silly, well maybe, but I am the crazy mama who keeps her child in the house like some sort of shut in. Reading this I do feel guilty. You are so right about letting these cute little kiddos out and about...Im just to afraid of what "might" happen. I am always anticipating our next PCMC visit. Its sad all around and nobody wins. Perhaps by next respiratory season things will change....However I am breaking through and bringing my cute guy over to meet mr. Jaxson, and to wish him a happy birthday. We are so excited!

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  7. First I must say I love the last photo of Jaxson getting smooched. He is loving it. Your post touches a cord with me as I have been housebound for a while. I am just deabting with my husband right now about this issue. The fear of germs can put a damper on things. I am going to take some inspiration from your post today and once things calm down a bit, I am going to try to get out more. Thanks for sharing this.

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  8. Dawn.mann@hotmail.comNovember 18, 2009 at 4:23 AM

    I just found your website and watched your video about Jaxson's fight. Wow, what incredible parents you are and what incredible fighters you are too!I'm really struggling right now to get over the loss of my own very special little boy who had so many of the same things as Jaxson. It's so hard for people to understand what's it's like to have such a sick baby who spends months, years and sometimes an entire lifetime in the hospital. I just wanted to say how much I loved your blog and how much I appreciated you opening up your life and family for others who need hope and inspiration! God Bless your family :)

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  9. Wish I could come to his party! :(
    NH is kinda too far away. It will be great, and I LOVE that last picture of him with his content smile. So sweet.

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  10. I love your personal opinion! And you can run but you can't hide. i tried like a nut to keep the germs away. Wash hands , change clothes from school keep the baby away from EVERYWHERE. It didn't work, half of them already got the flu! may as well just use common sense and enjoy!
    Kiss those gorgeous cheeks for me!!

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  11. I like your common sense approach. Barbara

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  12. You definitely can't let germs keep you from living! But, I think that there is a healthy balance to it...I'm just trying to figure out what that healthy balance is? Living life with your family is the most important though...good job doing this Lacey!

    I LOVE that 3rd picture of Jax and his daddy! If that isn't a picture of pure bliss, I don't know what is! HUGS!

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  13. I wish I lived close :( But if I was there I probably would ignore everyone because I'd be too busy cuddling that handsome little man of yours! You're a great mom who understands that life in a bubble is not a life at all!

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  14. I am so glad you take him places! I always love to see his sweet face! So looking forward to this weekend!

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  15. Thanks for sharing your opinion on this one. I have been struggling with whether to keep my little guy house bound this winter or not. You thoughts/opinions actually helped me realize that I can't keep Jayden in a bubble. Thank you!

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  16. is that smoocher picture the best or WHAT??? sooooooooo great.

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  17. His smiley face picture has to be the most heart warming picture I have ever seen.....He is such a loved little boy :0)

    Kids need fresh air.......Also, when you keep everyone couped up indoors all the time with all those germs flying through the air it's not really good.

    Plus I'm such Jax wants to go outside and build a snow man with his brothers :0)

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  18. I wish I could be there. Just make Carter wear a Vickie mask (even though I'm sure they'd rather wear a Matt or even Mia one! haha), and it'll be like I'm there =P

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  19. My philosphy exactly Lacey. We should be careful with out kiddos but still live our lives. You said it all so beautifully. Definitely let me know when you makes those next plans for CA as we are dying to see you guys and Joe would love to take Ray out riding all night long. Hoping something works out soon. And I am VERY excited to hear more about this possible adoptee in CA...do tell.

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  20. Oops..forgot to say that I LOVE that last pic of Ray and Jax where you can tell that Jax is smiling!!

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  21. TOTALLY agree! And I LOVE the pics of Jax! :)

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  22. Great post Lacey...you are so right. Enjoy them because that is why we have them. Germs are everywhere and being careful so they don't get sick is super parenting all while letting them experience life to the fullest!

    We hope the party is a blast and wish we weren't states away otherwise we would be partying it up with Jaxson!

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  23. I just couldn't agree more - I think you're the perfect mother for Jax, and his family is the where he was meant to be!
    I don't know if what I'm trying to say makes any sense? But I believe we choose our destination before we come to earth, and Jax chose you and your family for a very good reason - he's perfect for you and you for him!
    I hope that his birthday party is a complete blast!!

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  24. Lacey, I agree 100% with you! My girl goes everywhere with us. That means the mall, WalMart, the zoo, anywhere! Sure we leave her home when we have a nurse, because sometimes it's just easier. But I do not have the energy to freak out about leaving the house. I do not do good shut in, so out we go!

    Speaking of which, any plans to come back to Disneyland anytime soon?

    I love the picture of Jax smiling. It really melted my heart today!

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  25. What a priceless picture of Ray and Jaxson! So sweet. I am totally in agreement with you - you still have to live life and we take Carter everywhere too. I can't wait to bring him to your house so I can see and hold sweet Jaxson again. Carter is excited to see Ray again too!

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  26. Lacey I love your honesty. You hit the nail directly on the head. You know I totally back everything you said because I feel exactly the way you do. I have said it before with our Liliana. She will not live life inside a bubble. She goes with and does what we do. We are planning our first trip to Disney World in February and I can't wait to take the girls. Lily will definitely be a part of that and always will. Jaxson, as I have said before, is such a lucky little boy to have such a loving, caring family as yours. The pics of him are priceless!

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  27. Good for you Lacey. Sweet lil Jax looks so lovable in these pics. And SO loved!

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  28. Lacey- Love, love, love the green monkey jammies! So cozy! Your travels and trips look awesome. And it is so true about the immune system- I think every new mother battles with that. When I went back to work at 8 weeks post-partum with our eldest I got lots of comments about Zuzu being daycare so young- and when the Quail did the same I got even more.

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  29. aaah look at his smiles in those pictures!

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