Tuesday, June 30, 2009

moving up and hopefully OUT!

















  • Pictures:

  • I'll take a nap and then I'll execute the rest of my escape plan.

I love my new hallway greeter job. My first nurse and girlfriend Megan made me this hat on my first day here! Hi Megan! No wagon rides post op....it reminds me of my ride to surgery! stroller rides are cool. I may try the wagon again soon.

  • There's this really cool game...my opponent tries to use as much tape as possible to keep this light on my toe and I try to pull it and chew it off...I ALWAYS win!!
  • Who knew eating could be so much fun?

Jerry moved to the 5th floor which a good move toward home. It is not so good space wise...we are really crammed in there with another family. Jerry has been getting back to his old self pretty much...especially today. Yesterday he had an echo (heart ultrasound) that showed his heart function was declining. So they had to return one of the IV meds they had taken off. They test his blood gasses too and those were bad but now improved a little so they took him off the IV meds and moved him to the 5th floor. They will redo the echo on Thursday. He is eating like crazy (compared to the 2 months prior) and it is so nice to see him eat without pain or upset. We have had a lot of freedom with being unplugged from the monitors and that is a great feeling too. The monitors are kind of pointless for JJ since he pulls everything off. The monitor always has question marks!

Friends Jen and Trish came to visit last night and brought a few things we needed. It was great to see them. They maybe got a smile or 2 from JJ but he was pretty crabby from not napping. HE has rearranged his schedule so that he naps from 4 to 6, goes to bed at midnight, and plays in bed from 4 to 6am.
Isaac Has been in Cleveland since Thursday. He had a fever the first few days there so That was hard (only for me!). But he is having a blast with his cousins now.

I am starting to think more about what we have been through and how amazing everything is. It is so scary to realize what danger we have been in over the last year. We are so thankful we got here in time . I may continue to worry more than before when he exhibits changes and will probably be more assertive about requesting echos more frequently if I am concerned. For a while, he will have them weekly and then monthly anyways. Thanks for all of your thoughts, prayers, and keeping up with the blog!

12 comments:

  1. Love seeing that smile and hearing his laugh!!!!
    Hugs to you!
    Chris

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  2. God has blessed your little love with wonderful caring doctors and nurses.
    Not to mention the wonderful Mommy and Daddy that Jerry has been given.
    Continued progress as little as the steps maybe are all to be celebrated!
    Moira

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  3. Great to see Jerry smiling and laughing! Hope things continue getting better each day.
    Karen

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  4. what a GREAT update!! :) So happy to see that smiling, laughing face! I have a friend of a friend whose daughter just had the same surgery a year ago -- she may be contacting you soon. She was at CMH too!

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  5. Glad to see baby Jerry is doing so well. We will keep praying for all of you and for a speedy recovery! Hang in there!

    Teresa

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  6. So glad to see Jerry is improving! He is so adorable! If you need anything, feel free to contact me. My son was born with heart defects too. Hope everything continues to improve and that is pain is controlled. We will be praying for you all!
    Katrina Bradley
    jkbradley@glwb.net
    www.carepages.com
    cp:EthanBradley

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  7. It was so great to see you and Jerry. He looks even better in person! Can't wait to have all of you home.

    Trish

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  8. Hello Sue! Jen passed along your blog to me. Glad to hear Baby Jerry is doing so well. We can relate to so much of what you are going through. Sleep schedules, machines, ... We will continue to send positive, get well soon thoughts your way.

    ~Kim Gudmunson

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  9. Hi Sue, Hope things are continuing to improve today. Jerry is such a cutie! Hang in there.
    Alissa Chrisos (Mary's mom)

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  10. It was great to see you and J.J. on Monday. Even better was hearing that you will be home soon! Can't wait to see you in the alley! Sending lots of love, get well wishes, prayer, and hugs your way! Love, Jen

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  11. Oh my goodness, Sue. It is so good to see little Jerry laughing! I really wish I could do something to help you guys out, but I am trapped here in Georgia! Give Jerry a kiss for me. Still praying that he'll get all better soon. Love, Cindy

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  12. Jerry I am so happy you are doing better and am so glad i got to be with you for a little while. I dream about you almost every night and think about you every day. You are one awesome strong little guy and I love you tons.

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