7/31/2011233 Days Old

July 31st, 2011

On the 233rd day in the life of the most beautiful girl in the history of the world the morning began peacefully. I stayed up with Maya after her 6:00 feeding. We moved out to the couch and Maya slept as I watched a replay of last years KSU vs MU football game. Erin was able to stay asleep until about 8:00.

We camped out on the couch with Maya for almost the entire day. Maya had a bad day today. We did get out to an open house while Grandma Chris watched Maya. She was seldom awake and not for very long. Her color was OK this morning, but this evening she really began to struggle. She is on multiple medications on a regular schedule now in an attempt to stay ahead of things. Even with all the meds Maya was still irritable this evening. We gave her a bath and got her ready for bed.

As we were sitting in bed waiting for her late feeding Maya woke up. For some reason out of the blue her wonderful eyes opened up and she started to talk to us and play with her tongue. It only lasted for a few minutes before her crankiness took over, but we were very happy to see it. We still don’t know how Maya will do from here forward, but we feel like we don’t have much more time with her. Her respiratory system just can’t seem to keep up. ¬†we are in a hard place right now. We would love to have as much time with her as we can get, but it is hard to see her like this. We will keep doing everything that we can to ease her suffering. We will continue to hold her and love on her as long as we can.


17 Responses to “7/31/2011233 Days Old”

  1. Brandi (from FF) on July 31, 2011 11:01 pm

    Thank you for sharing your sweet Maya with us. Its such a sad, yet joyous story. I love looking at her pictures. Her cheeks are so chubby and it makes me smile! Tons of prayers and hugs being sent your way.

    Brandi

  2. Tina on July 31, 2011 11:23 pm

    Little Maya truly is an angel in a baby suit. I’ve followed your blog for moths and my thoughts and prayers are with you and your family. The strength of your family is amazing and can be felt in every entry. May love and peace surround you and Maya every minute of every day.

    Tina (from FF)

  3. Jen Colville on July 31, 2011 11:52 pm

    I surround you & your family and especially Maya in light & love..She is in my prayers…

    btw, Due Date Dec Moms on FF are all praying….

  4. Peggy on August 1, 2011 6:17 am

    I check on Maya every morning and am always amazed by the strength that you all have. I pray for Maya’s comfort and your continued strength. Many hugs to Maya, her awesome parents and her great support system.

  5. Christine on August 1, 2011 8:39 am

    Praying for comfort and peace for you & precious Maya.

    Christine (From FF)

  6. Sherri (From FF) on August 1, 2011 9:56 am

    Thank you so much for sharing Maya’s story with us. We are praying for you all.

  7. Laura Harring on August 1, 2011 11:50 am

    Continually praying for peace that passes all understanding, and a fighting and spunky spirit for gorgeous Maya! I’m humbled that you’re willing to share that gorgeous little girl with all of us, and won’t stop praying for you all!

  8. Elizabeth Speer on August 1, 2011 12:20 pm

    I have missed a few days of Maya’s blog. It sounds like the days are getting tough. Our family prays for Maya every night. May God comfort you and strengthen you and give you wisdom to know what to do to best help sweet little Maya. Your and Erin’s care for Maya and one another is such a blessing to all of us.

  9. Theresa (hopeprayshine from FF) on August 1, 2011 2:07 pm

    I read your blog everyday you post. Your sweet little Maya is such a blessing – & the way you describe her eyes is just so touching. She has already left such a mark of inspiration on so many hearts – she is such a strong little girl to have overcome all these obstacles this long! My heart, thoughts, & prayers are with you – you have been a blessing and an inspiration to me (& many of us Dec 2010 mamas on FF) – I will continue to keep you all & sweet, beautiful little Maya in my prayers daily.

    God bless you!

    Theresa (hopeprayshine from FF)

  10. Leana on August 1, 2011 2:14 pm

    Thinking of you and your beautiful and amazing little girl. Thank you for sharing Maya’s story.

    Leana (from FF)

  11. Heather on August 1, 2011 2:54 pm

    You guys are in my prayers. I have read your blog from the beginning and while I don’t know your family in person I feel for your family in this time. Maya is beautiful! The amount of strength and courage that she and your family has is astounding, I pray that God bring you comfort and strength :-)

    Heather from FF
    (hmoline)

  12. Jeannine on August 1, 2011 5:26 pm

    The way your family has pulled together to love your beautiful little Maya is inspiring. You have given her such an enriched, full life. It has been beautiful to watch. Thank you for sharing her with us.

    Jeannine (from FF)

  13. Heidi on August 1, 2011 6:06 pm

    What a beautiful blog And beautiful little girl…you are all in my daily prayers as I have been reading daily for some time.
    Heidi (from ff)

  14. Robyn on August 1, 2011 7:47 pm

    Thank you for sharing your journey with your beautiful, precious Maya. Sending you love, light and prayers every day.

    Robyn (FF)

  15. Janelle on August 1, 2011 8:49 pm

    Maya is so blessed to have such loving parents and family. The love is so evident in every post. She is such a beautiful, strong little girl. My thoughts and prayers for you all during the bad days and the good days. Thank you for sharing your precious little girl with us.
    Janelle (FF)

  16. Jami on August 1, 2011 9:03 pm

    Keeping you all in my thoughts and prayers. Stay strong for little Maya. She is blessed to have such wonderful parents.

  17. Jackie on August 1, 2011 10:20 pm

    She is such a beautiful little baby girl and so very special, as well as you both…praying for strength for all three of you…

    Jackie (FF)

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