Today Lettie worked just as hard as she did yesterday. She really likes the stimulation she gets from the big swing in OT. She drank about 1/2 ounce from her bottle during speech. Her suck is still uncoordinated but she did not aspirate any liquid. We're going to try using an open cup with a thickener in it to help her swallowing. She ate a little today as well, gagged on her pureed eggs and butter( can't imagine why?!) She continues to do that startle look when she wakes from a nap. It makes me very nervous. We thought we may need to add the third klonopin dose back because it seemed to help with that "look". The rehab doctors spoke with Dr. Paolicchi and she wants us to wean off of the klonopin instead. We'll see how this goes, but if we continue on this startle path we will have to request to go back on it. She strongly encouraged us to continue on the keto diet. This diet is so hard with Lettie. She was always a picky eater and only had a handful of things she would eat so once again, we'll do our best but if we can't get her to eat we'll have to stop it. Life is already difficult, no need to add to the stress and I don't want to keep the NG tube forever.I had the team meeting today with everyone involved in Lettie's rehab and the estimated length of stay is 2-3 weeks and then recommendations to increase our outpatient rehab at home.
We had some great visitors today, Lacey Mashburn and Kristi(Thomas)Smith. They brought goodies and sweet deliveries from others as well. Thanks to everyone that sent stuff. We love the Lettie Bug sign! It had Mark 11:24 on it which is such a great verse, "Therefore, I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Continuing to pray for a miracle that hopefully will soon be ours!
Praying....Patti Brown, Knoxville
ReplyDeletePraying everyday for your family........
ReplyDeleteGlad Lettie had a good time on the swing today. I have been praying for you and Lettie so much. When I saw the picture you sent to your mom's phone today I thought she looked a lot more alert! I will keep on praying for that miracle to happen soon. I know it's going to happen, I just hope its real soon. Summer, I want you to know I am so proud of the way you care for Lettie and I know God is proud of you too. Lots of love and prayers!
ReplyDeleteAunt Donna
Praying for your family & for a full & speedy recovery for Lettie! I can't even begin to imagine what your family is going through, but your strength is AMAZING & ENCOURAGING. thank you for sharing your story!
ReplyDeleteMany prayers sent to you!!
Brenda
I know Lettie has so many challenges in front of her right now, and I can imagine how exhausting the thought of exploring any other treatments probably seems, and I suggest this only because if there is anything that can be done to help, I hope God will lead you in that direction...but have you ever read or studied anything on Accupuncture? I'm not sure it is even practiced on children but I was thinking perhaps it may be of some assistance in improving blood flow to the thalamus? I know one of the primary benefits of accupuncture is that it improves circulation to those areas that are treated. Probably a far-fetched idea but wanted to mention it. Still praying all the time for all of you.
ReplyDeleteAs always praying for that miracle. Every night I ask God for specific things for Lettie. Tonight will be that the drinking in an open cup works well and that the startle look goes away even with a decrease in the klonopin. I won't mention the keto diet to Him, I don't think anything could help that! Take care, Candi
ReplyDeletePraying, Praying, So hard for our Lettie Bug...she has touched my heart so much and so has your faith,Summer.... Thanks for sharing your journey.....after i work a 12 hr shift on the oncology unit i can't wait to read your updates....please post a picture of Lettie i love to see her cute face... God bless I pray for a peaceful night.... Tracy R.N.
ReplyDeletePraying diligently & asking all the prayer warriors I know to also pray for sweet Lettie & you & Mark (& Jack & Cooper). Believing God's going to heal Lettie!! Lisa C
ReplyDeleteSummer, Still praying for Lettie, you and Mark here in Nashville. Would like to drop in for a visit in Atlanta, but that is a little far for us right now. Our hearts are in Atlanta with you as well as our prayers day and night. I praise God for a wonderful mother like you. We both send our love. Windy & Sue Ann
ReplyDeletePraying for sweet Lettie! It's good to hear the good things, as well as the things to continue begging God for. I was thinking/praying today, and Summer, you kept crossing my mind/heart. Maybe it was when you were meeting with the team. Maybe it was when Lettie was waking up with "the look." No matter what time it was, I stopped to lift you up. I know you are tired, I know you are frustrated. God knows too. He hasn't, and won't, leave your side. He's there with you when you're angry, frustrated, sad, and happy. Today, my prayer for you was that you just rest in His arms. Take a deep breath and really breathe again. God is healing Lettie and bringing a world to Him. We love you so much and can't wait for you to be home! Praying now, that we see the early side of 2 weeks, rather than the later side of 3 weeks for a homecoming!
ReplyDeleteSummer,
ReplyDeleteWill pray that Lettie loses that "startled look" when she awakes, and that she does well drinking from the open cup with the thickener added. Also praying that the doctors have insight and wisdom as to Lettie's meds. and her treatment. Praying for comfort, encouragement, peace, and happiness for all of you. We love Lettie and want to see her healed fully and completely and soon. God is good.
Valerie Allen
Oh I love that you got that verse!!! I'm standing faithful with you in believing & claiming the miracle only our awesome God can provide. All my unceasing prayers for you all!
ReplyDeleteGlad today was a busy one for Colette. I believe that tomorrow will even be better. It will not be long until you and Colette are back home. Give her a hug. Today was Jonathan's 8th birthday God does answer prayers. You & Colette are in my prayers tonight & forever.
ReplyDeleteLove,
Patty
I would gag on pureed eggs and butter too! ;) Our prayer continues to be for miraculous healing in Lettie!!! We are sooooo standing in belief with you!!!
ReplyDeletePraying for you and Mark, Coop and Jack always too! It's just amazing to read your posts since arriving in Atlanta! How far He has brought you from the first days post op! Daily miracles, really, amazing stuff He is accomplishing!
Keep strong in His word Summer!!!! Sending you a big hug!!!! :) and so much love!!! xoxoxoxoxooxoxoxoxo
=D
Michelle
Maybe the miracle is already happening. Maybe it is the way you and your family have brought your God to all these people. <3
ReplyDeleteEvery morning I hit my office, log on and look for that great big miracle for you all. I know that is going to happen, I am praying for that every morning. I am praying right now that those startled looks will turn to great big smiles. Hang in there better days are coming.
ReplyDeleteSize :)
Letties a beautiful little girl and we are all still praying.
ReplyDeleteMy friend told me about Lettie. I'm following your blog and every morning I'm praying for Lettie and your family. I'll ask my friends here to join in prayers as well. Izabela from Wisconsin
ReplyDeletePraying for you & Lettie today! Lisa C
ReplyDeleteSummer & Mark this is my devotion for the day & I thought of you both with your Journey with Lettie...I hope this encourages you and give you courage to forge ahead and see what God has in store. He holds Lettie in the palm of his hand and many lives are being changed due to the circumstances you are in right at this very moment! Take heart Jesus has overcome the world! That same spirit that raised him form the dead is living and breathing in you! You have the power to call on at any time. God is the only constant in an ever changing world. Trust him (not the circumstances) he has final say about Lettie, not the dr's, nurses, therapists, etc..he's given them the knowledge to do what they do, but HE IS STILL ON THE THRONE! I have been where you have been with my sister in law with a failed bone marrow transplant and leukemia returned with a vengance and I felt so hopeless! Life is not hopeless when you put your faith & trust in the one who gives hope! Seek answers in his word. Ask him to show you what you need to see in his word on a daily basis. Life is HARD BUT GOD IS GOOD! He will give you the strength day by day (just like the Israelites)just enough to get you through that day. Take one day at a time or you will be overwhelmed. Satan likes to sneak in when you are physically,mentally and spiritually exhausted. Beat him at his own game and rebuke him with the name of Jesus & scripture. He is the father of all lies..you cannot believe him. Write down how you feel...God already knows so if you're angry tell him all about it. Run to him with everything you have. Climb in his lap he is your father, dump all those troubles in his lap. He is big enough to handle it! Praying fervantly for all of you....FAITH HOPE & LOVE...THE GREATEST OF THESE IS LOVE I CORITH 13
ReplyDeleteXOXO
KIM & ANTHONY BREWER
NORTHSTAR FAMILY
Prepare for Promotion
July 28 Devotion Joyce Meyer Ending your Day Right
I Peter 4: 12-13
Dear friends, do not be surprised at the painful trail you are suffering, as though something strange were happening to you. But rejoice that you participate in the sufferings of Christ, so that you may be overjoyed when his glory is revealed.
Painful trials are a part of life but God loves you & helps you to grow through them. Each challenge you encounter in life is part of the education process - a process that determines when you’re ready to be promoted to the next level.
Trials build spiritual muscle, faith, endurance, & longsuffering. They are opportunities to experience firsthand the faithfulness of God & to show your ability to rejoice as you share in the sufferings of Christ.
Trials come & go, but the development of godly character – your personal spiritual maturity – during the process makes you a worthy candidate for the promotion God has planned for you!
"So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised." Hebrews 10:35-36 (NIV)
ReplyDeleteHey Summer! It's Shelley Seratt from OT school. I had no idea that you and your family were going through this! We will definitely add Lettie and the rest of your family to our daily prayers and I hope that your miracle does come soon! Thank you for sharing your journey!
ReplyDelete