Unfortunately, we have taken a step backwards today. As you can imagine, this is VERY difficult when you cling to every small stp of progress. The Doctors do not think Lexi has a gag reflex, along with her inability to suck. Because of this, they have stopped allowing her to try mouth feeds with Occupational Therapy (OT). If Lexi doesn't have a good gag reflex, she can swallow the milk incorrectly and it can go into her lungs, which can develop into pneumonia. OT will continue to work with her using a pacifier but Lexi has NO interest in this! Neurology ordered Lexi's 4th EEG and that was completed about 11pm tonight (it has been a very long day!) We will get the results back sometime tomorrow. PLEASE read the specific prayers requests below as I, Jon, and my family are beginning to reach a breaking point and need a Divine intervention for some answers for Lexi.
Pray for:
The neurology team as they try to sort out exactly what has happened with Lexi. Her incision is completely healed from a cardiac standpoint. Something happened nuerologically either during surgery or recovery to cause these facial issues with Lexi. Pray that someone is able to sort it all out and find the cause and hopefully a cure!!
Pray for strength for me. I will be honest in the fact that I am overwhelmingly exhausted and emotionally drained. When Lexi is awake, she cries. Most babies are soothed by sucking- either a pacifier or a bottle. Lexi does not currently have this ability so my soothing options are limited to swaying back in forth in front of her crib (I can't go far because of the feeding tube), or patting her little bottom. I need patience and comfort as I am down in Columbus alone. Pray that the right nurses are put in place for each of the shifts so I can have comfort in Lexi's care.
Pray for my family and the twins back home as they continue to provide care for the twins.
PLEASE pray that God will perform a miracle in little Lexi's body and cure this "short curcuit" in her brain.
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2 comments:
Shay - we are praying earnestly and fervently for you! We are praying for a miracle and claiming one for Lexi. We serve a BIG GOD so we don't have to be afraid of asking for BIG THINGS! He has the answers to all those questions and we are praying that He will reveal those to the doctors even today. You, Jon, Lexi, and the twins are constantly in our minds and I send up prayers for all of you all through the days and nights. I know so many people are praying for you! Hang in there - if you need me late at night, you can call me as late as you want - I'm here if you need an ear!
Love Ya Sis!
Amy
Cherie.....I just read this whole thing to my family!!!!! we are praying and praying and wishes for those small steps forward and the small steps back to stop. I do not know who your nuerologist is, I would encourage you if you are not getting the answers you want to ask for a second opinion. Taylor neurologist down there is Dr. Kosnik and I honestly feel he's the ONLY reason Taylor walks to this day. You can call me anytime as well. I know I am not family but in Christ we are ONE. Get your sleep as much as you can. Will they not give you a nurse for overnight so you can go to McD house and sleep a full night to decompress???
LORD LIFT CHERIE and her family UP! GIVE THEM THE STRENGTH AND ENDURANCE TO WIN THIS BATTLE. AMEN!!!
The Marquarts
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