We made our fifth move in two weeks this afternoon. Lettie is now in a EMU room, which means she got re-hooked up to the EEG and will be video monitored for the next 24 hours. She had another seizure at 1:45 this afternoon and it looked just like our old seizures. This led us to doing another EEG to try and figure out what the heck is going on in that head of hers. They had to glue the electrodes on this time so that's a real bummer for her. She tolerates it so well though, especially considering the right side is still swollen with spinal fluid. Have I mentioned that nothing during this process has been easy! I just had to voice that and get it out of my system. Overall though, she has had a decent day. She ate more applesauce and did very well at it. She still won't take her bottle, but we tried an open cup and she swallowed some sips from it. If we could get her to take in more calories we could lose the NG tube. Tomorrow I am supposed to have a care conference with all of Lettie's medical team and get some answers as to what they think is going on and how long we'll be here. Please specifically pray for no seizures, drinking from her bottle, and good answers from her EEG. I have faith in God that each day is going to better and easier. This afternoon, MIke Seager(sp.?), the pastor from Inskip Baptist in Knoxville was in Nashville and came to visit us. It's so amazing how God is putting so many prayer warriors around us. He was sent by LeaAnne Dollar, whom I've never met, but she has been following our blog and has fallen in love with our Lettie bug! How awesome is that...someone I've never met sent her pastor to visit me! Thank you LeaAnne and thank you for the wonderful letter, praise CD, and picture for Lettie (it's hanging on her door). Once again I have to admit, I have faith God is gonna make this situation better! Took a pic of Lettie asleep with a bunny her Gigi got her and one with her EEG head wrap!
Summer, it truly is amazing how God's church comes together in our unimaginable ways. I can't wait for you to meet Brian, Ashley, and Ryan when we come on Wednesday. God's hand is moving. Of this I am sure. Lord God, we wait expectantly to see what you will do not only for Lettie but for your church of believers. In the name of Jesus, I ask that the answers to the seizures be made clear to the Drs. so they will be stopped. Give her the ability to eat again so the tube can be removed. Thank you that she ate even a little today. I pray for unity and wisdom as this team of professionals and Summer meet tomorrow. May the answers come. We wait on you, Father God our Great Physician. Amen.
ReplyDeleteStill watching Letties progress,and she is a beautiful little girl. You are all very special and your faith gives me strength. We can all learn from you. God Bless You All.
ReplyDeletePraying Lettie has NO seizures,increased intake & she starts drinking from her bottle & get good answers from EEG. Also will be praying for your conference tomorrow.Praying y'all have a restful night! In His Love,Lisa C
ReplyDeleteLove seeing Lettie in her new room, and with her bunny:) Praying the new room and monitoring arrangement provides insight for the Dr.'s. I just keep praying for peace...the peace that surpasses all understanding...for you Summer, as you wait on those around you to coordinate and determine a resolution for treatment. Praying for your family this week as you adjust to being where God has you. Continuing to pray for the specific areas you have mentioned too: no seizures, Lettie's nutrition/bottle use, and good answers from the EEG.
ReplyDeleteLove to you and Lettie tonight/this morning:)
Hi! I'm Erin and I go to Northstar. I had the honor pf praying over you all that Sunday morning before you left. I have been praying for Lettie as well. er story is near to my heart as I have a niece about 2 weeks older than Lettie and I am a Special Ed teacher for Knox County. I have had a lot of experience with kids who have seizure disorders and I know how scary it is for us and how hard it is on their little bodies. I have a little friend with a mitochondrial disorder that has caused her to seizure for years and she has her good times and bad times. I'm sure you all know that you're not alone in this. Your prayer warriors have you covered and God is near. I can't imagine how hard this is to go through, but I am praying for the Holy Spirit to comfort you and fill you with peace. Isaiah 26:3 "You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you!"
ReplyDeleteFrom a special educators point of view and as a fellow believer, I know that God is perfecting Lettie to be exactly who he has planned for her to be. She may be going through some rough times right now but He is just in the process of making her life more beautiful than it already is. No matter where this road leads her, it will be exactly where God wants her and it will be perfect. The fingerprints of God are all over her and her life will speak his name!
If I can do anything at all to help, please let me know! (erinlilly80@gmail.com) Here's a link to a song that has mean a lot to me in hard times by my friend Meredith Andrews: You're Not Alone
http://www.youtube.com/watch?v=8FXLo3aCkuQ
Lettie- You're not alone, you are safe in Jesus' arms. He has never left your side, he has seen you through your darkest night and He's the one who's loved you all your life. Faithful and true forever, His love will carry you! Let Him wipe away your every tear precious girl. May you be healed in Jesus name! Amen!
Summer, I'll be praying today for Lettie's swelling to go down, no seizures, sucking reflex to return, and for you in your meeting and for all the doctors to know what to do for Lettie to progress and be well. I'm glad pastor Mike got by there,and was able to pray with you all. I love Lettie's photo with her bunny. God bless you and that sweet
ReplyDeleteI also wanted to say that I think Lettie's color lol much better in these photos! Well, I'll pray for your strength today also Summer and you get the answers you need to get that precious baby on her way out of that hospital. LeaAnne Dollar
ReplyDeleteLeaAnne Dollar
LeaAnne Dollar also told me about Lettie~we at Ridgeview Baptist here in Knoxville are praying for Lettie, and you guys Summer.I pray specifically for her seizures to stop and for her to be able to drink from a bottle so she may be taken off the NG tube.I pray you feel Gods presence and Lettie feels safe with Gods arms around her.Summer,thank you so much for the updates!!
ReplyDeleteBe strong and courageous. Do not be afraid or terrified because of them, for the LORD your God goes with you; he will never leave you nor forsake you."
Deuteronomy 31:6
praying....p. brown, knoxville
ReplyDeletePraying 4 you right now! Lisa C
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