Porter arrived home to Lehi, Utah on the evening of Thursday, July 12. We were all so excited and Porter seemed to share that sentiment for a few hours before settling off to sleep for the night.
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| Brinley, Thom and Porter on Homecoming day. |
Abby and Thom got all set up with the feeding pump and other necessities to live happily ever after. Problem is, when Porter woke up the next morning, he started crying- screaming at times- and wouldn’t stop until he wore himself out and went back to sleep. This pattern continued all day Friday, Saturday, Sunday and Monday. He would cry hard for 2-3 hours, sleep, cry, sleep. He didn’t have one moment of contentment except when Thom put him in a little bath of warm water on Sunday evening. Abby and Thom were exhausted trading him back and forth and the hope of comforting him was fading by the moment.
Monday arrived with Thom heading to work and Abby about ready to lose it- mentally & physically. Sarah was there to help, but Porter seemed to get worse- not better. After a pleading prayer to the Lord for help, a doctor from Primary Childrens' called to say that blood/spinal fluid tests had come back which indicated more problems (and hopefully answers) for Porter. They had discharged Porter thinking the tests would take up to 3 weeks to get back, but in a miraculous way, they got back in 6 days!
Primary requested that Porter come back to the NICU as soon as possible to be treated by a world-renowned neurologist specializing in neurotransmitter disorders. So, Porter has been admitted back to the hospital and a whole new team is taking over his care. He is back to where he started and we are anxious for answers to cause, effect and treatment for our little guy.
Thank you to everyone for your faith, prayers, visits, positive energy, sharing thoughts & talks, and yummy food. These kind acts of service mean the world to all the family and we love you for it!
Thank you for the updates. We love to hear how little Porter and the rest of the family is doing. Our thoughts and prayers are with you.
ReplyDeleteFrom Sandi
Thom and Abby, My mom told me about your sweet baby boy and I want you to know we have been praying for you!!! You guys are amazing, and Porter must be also to accept a challenge like this!!! Love you guys and won't stop praying!
ReplyDeleteShelly Johnson
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ReplyDeleteHe is so cute!! Please feel free to bring Brinley over to play ANYTIME!! We love you guys!!
ReplyDeleteJessie Cannon
Abby, Thom, Cindy, and all Tullis and Bandley family... we are sending you our love and hope for darling Porter. He looks like such a sweetheart. Hang in there, Porter, and all of you! Love from Seattle, Shellie and Jeff (Tucker/Thomas)
ReplyDeleteWere thinking of you Abby!
ReplyDeletePorter is SO VERY blessed to have been born into a family with so much love and support!
ReplyDeleteWhat a journey in just a few short weeks! Abby and Thom - your names continue to be lifted up in prayers.
Exhaustion, tears, frustration is all understood and normal. I am so glad God continues to show you that He is with you on this journey. I love that the tests came back so early! May you continue to see His hand as He comforts and guides.
Love to all! Michelle Baum