Tuesday, September 22, 2009

day by day, hour by hour

Ellis is cooperating with weening off ECMO. He is still supported by the 3 treatments - ECMO, oscillator, and nitric...just at lower ECMO settings. We have no idea how long this process will take; his doctors are willing to give him as much time as he needs.

Ellis has shown amazing strength, and we are grateful for each day. This week we are focusing on just enjoying our time with our son and no longer concerned so much with what is the next step.

He has been chemically paralyzed since his first day of life because he moved so much...just like in the womb! Today, his team has started a drug to "wake" him up from the paralysis to see how he responds. We are looking forward to seeing some tongue movement and maybe some fingers and toes!

He will be one month old on Thursday, and we are planning a birthday party for him!

5 comments:

  1. That's so great that you guys are just enjoying spending time with Ellis. That's the perfect mentality to have. I'm so excited for you guys to see some movement soon. Please give him a birthday kiss from his Aunt Jennifer. :)

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  2. Your friends at Anchor are keeping the whole family in our thoughts and prayers. One day at a time, step by step...

    Gary D.

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  3. Wow, it's already a month! Time flies and every moment is priceless -- give him lots, and lots of birthday kisses for me!!!

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  4. Keep up the good thoughts, we are sending ours as well. He is so lucky that you are both able to be with him daily! We love you, and the kids send all of thier prayers as well.

    Yesterday Evey saw the picture of him on the blog, she said, "who dat Mama?" I replied with misty eyes, "Evey that is your cousin Ellis." She looked at me and said, "It's ok Mama, he has a hat," and then gave me a hug.

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  5. Hi Christine and James,

    I was very happy to get in touch with your friend Margarita. She shared an e-mail with me regarding Ellis' condition. I thought about all of you that day at work . I lit a candle for Ellis at St. Clare and I will continue to pray for Ellis and good days ahead!

    He looks absolutley perfect and hopefully our Lord will continue to heal him. He is loved by so many!

    Please if you need any help with anything including caring for Lila (after all she knows me a little bit) I am a phone call away (314) 456-1195. If you need some company at Children's, I will be more than happy to bring you lunch or anything that you need!

    You guys take care of yourselves and please let us help!

    Much love and prayers,

    Michelle Corpus Avanzado

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