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Wednesday, October 20, 2010

Not much here!

Not a whole lot going on here except for medical problems. Same ole, same ole stuff with my warrior. I thought he was getting better, and was ready to clamp his g tube that was venting and see if he tolerated it. Then last night he gagged and wretched for a good 20 minutes. Poor baby, thats got to be the worst feeling in the world.
I came across this picture from our June Disneyland trip. Its funny how things strike you at just the right time.
I was worrying about Jax declining health as he is getting older. Mostly because we know that he will only get worse, and that his life expectancy isn't long.
But look what this boy brings out in people.

Everybody has to stop and look...

Everybody has to touch...

Everybody has to smooch...



My perfect little angel!!!!
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15 comments:

  1. mandd3October 20, 2010 at 9:16 PM

    The funniest part of that picture is the two boys looking like "Awe man! Not again!" They are probably so used to people fussing over Jaxson. I hope he gets back to baseline soon, retching definitely stinks, and I do think it must be terrifying for them. I know Tomas cries and whines when it is finally over. God bless your sweet, special boy.

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  2. TinaOctober 20, 2010 at 10:43 PM

    Yes they have a way of bringing out the best in "most" people, compassion, love and kindness.

    I hope Jax feels better, I heart aches everytime you write about him having any kind of discomfort especially when you speak of his mortality. I know it must be a reality you live with but I pray it's a really really long way away. Miracles always happen, and I pray Jax continues to amaze us and to be your miracle child.

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  3. KristinOctober 20, 2010 at 11:15 PM

    Nothin' wrong with a little extra lovin' from Mickey! Hope he feels better soon.

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  4. HeatherOctober 21, 2010 at 12:14 AM

    Of course everyone does,because he is so darn lovable.

    I hate that you worry about him but i get it.Truly I do.


    Much love from us all.Can't wait to meet Arina.Sooo excited!

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  5. JuniorOctober 21, 2010 at 12:19 AM

    Love the pic.
    Lacey does Jax have a GJ tube?
    Junior has had one for awhile now and at night we keep a vent bag attached to the G (that way I can put it very low but not have to worry about his formula getting into it)and feed through the J port.

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  6. UnknownOctober 21, 2010 at 5:58 AM

    I understand how you must feel. You look into his eyes and want to keep him forever, trying not to think about the disease. Jax IS so special, I feel like I know him and I love his personality!!!!!

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  7. ktzmumOctober 21, 2010 at 6:50 AM

    Seeing Mickey loving on Jax is the sweetest thing ever! I bet he loved it!

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  8. VeronicaOctober 21, 2010 at 8:20 AM

    Love it Lacey! I hope that we all get our dreams to come true and we end up in Cali together. Lots more Disney trips together..

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  9. AliciaOctober 21, 2010 at 9:45 AM

    Awww, poor guy! I sure hope he starts feeling better soon!

    What a wonderful picture Of Jax & Mickey! Jax is truly a rock star!

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  10. The VW'sOctober 21, 2010 at 12:10 PM

    What a cute picture! Mickey loves Jax.....and so do we all! Get better sweet boy! Love, Hugs and Prayers!!!

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  11. keciaOctober 21, 2010 at 2:38 PM

    perfect words! I wish we could have seen you today and the playgroup...maybe next time!

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  12. MeghannOctober 21, 2010 at 3:23 PM

    I'm sorry Jax isn't doing well! It's a great picture :) Excited for your little girl to arrive at home! My heart is so full for your family, lots of love your way!

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  13. DevonLeahOctober 22, 2010 at 9:41 AM

    he IS a perfect angel, for sure. Hugs to you today....

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  14. AnonymousOctober 22, 2010 at 12:01 PM

    He is an angel for sure. I also would have to stop and love at him, there is something special about your little boy

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  15. MelissaOctober 22, 2010 at 10:15 PM

    I don't know how you could resist Jax...I know I couldn't!!!

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