This morning during PT, Selah grimaced, opened her mouth as if to say no (she can't really speak above the trach right now) and cried! This is HUGE! Of course we hate that she was upset BUT it showed that she can show emotions which are a response "above the brain stem" We are so excited and hopeful!!!
On top of this great great news, we were contacted by a staff person through a friend. A new hospital is opening in Orlando, Nemour's Children's Hospital. They have the same team approach as Strong's does. Sam had seen the geneticist there and she gave us his correct diagnosis after us wasting our time with another one for years! We had an appointment for both girls to be seen last month that we unfortunately had to cancel. We did not know another hospital was being built. we just thought it was a doctor's group associated with other groups. The conversations back and to between hospitals have started and we should have an answer by Wednesday if they will accept her. If they do, she will be their first patient. They are known for their research and their academic team approach. We are thrilled and think maybe this is the reason we never got a response from Lakeland. It will be harder for us as a family as Nemour's is the farthest of the hospitals in our area that we have considered but this might be the absolute best place for her. That is what matters the most at this point.
So our prayer today is that God will touch our baby and help her have more real responses!!!! And that He will open the right door for us in Florida. I had been praying that if there was somewheres else we should take her that it would be made clear to us. We are so thankful for his guiding hand through this dark valley.
This is a real roller coaster ride for us, some days are just wonderful and some are not...today is a GREAT day and we have renewed hope for Selah! I can't wait to go over there later, as we take turns staying with her. I hope she will give me some responses!! Thankyou for your prayers!!!!!!!
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
nemours is going to be an awesome hospital, we take Hannah to AI Dupont in wilmington DE that is also a nemouors hospital. Hannah also has a trach etc
ReplyDeleteyou can find my blog here
http://joansblessings.blogspot.com/
and also o fb joan collins jones
This brought tears to my eyes. Good tears. Stay strong, Selah!
ReplyDeletePRAISE JESUS!! So happy!! Praying this will be the first of MANY responses!!!
ReplyDeleteWhen you get a chance check out this therapy: http://blyum.typepad.com/on_abr_and_beyond/ We have been doing this therapy for 4 years and have seen great changes with our son. There are even families with near drowning children that are benefiting from it.
ReplyDeleteSusan Sheaffer
God is so awesome!! We know he hold Selah's future and this is so HOPEFUL! I had to read what you had written several times for it to sink in. Yes, it's HUGE! We gave thanks for Selah yesterday in church and we also gave thanks for your strong faith that has allowed you to be accepting of his will, whatever it may be. I know God is well pleased with your faith, your perseverance, all of the prayers being lifted up to him on your behalf, and most of all with the trust that He is always good. No.Matter.What. Praying in earnest that Selah will respond to her Momma tonight! And praying that the new hospital will be the answer to many prayers. (((HUGS))) from RI!
ReplyDeleteOk you just made me cry! I pray for the best for your little Selah!!!
ReplyDeleteSoooooooo happy for you! So excited! Praise God for this wonderful sign! I was so excited, I read the first paragraph of this post aloud to my husband. :-) I don't normally do that. He has been following your posts vicariously through my conversations about them, though, so I knew he would be excited, too.
ReplyDeleteI was also excited to hear about the hospital in Orlando. What a tremendous blessing for your family! Is that within comfortable driving distance of your home?
We have been told we will receive a job interview in a community not far from Orlando, so I guess it's possible we could be moving "down thataway" next summer, should the interview go well, and maybe someday we will meet you. I would love that.
Blessings! Praying for you and your family!
Wow! Thank God! Praying for Selah and your family!!!!! :)
ReplyDeleteThank You Lord for answers to prayer today for Selah....You are a Faithful God and we worship You for who You are....
ReplyDeleteLove from NC
Yay! So exciting!!!
ReplyDeleteWhat wonderful news! So happy to hear that. I have been following your blog for awhile now & praying for your family. I will keep you all in my thoughts & prayers & look forward to your updates.
ReplyDelete*Do not let the haters & negativity out there get you down.
Yayyyyyyyyyyyyyyy!!! I am so excited for her! And you! Go Selah Go!
ReplyDeleteJUMPING UP AND DOWN WITH EXCITEMENT with you over Selah's response!!!!!! PRAISE GOD!!!!!! HE IS HEALING!!!!!
ReplyDeleteOK a God thing....I saw a random advertisement board about that hospital, but didn't know where it was going to be! AWESOME! Praying for the RIGHT hospital for sweet Selah- you are right that is all that matters! PRAYING!
Isaiah 43:2
ReplyDeleteWhen you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.
To God be the glory.
ReplyDeleteGlory to God! Such awesome news!!
ReplyDeleteYAY praise God!!
ReplyDeleteWow. I'm glad to hear this!! Praying for you and Selah.
ReplyDeleteGood days and bad days . . . I'm so glad today was a day that has given you encouragement! And thank you for sharing. Selah's response, the news of the new hospital, and the team of specialists are all reasons for rejoicing.
ReplyDeleteStill praying for Selah and your family.
I cannot wait to share this news with my mom! She asks EVERY single day how Selah is doing! So very excited by this!!
ReplyDeleteI'm so excited and happy for you!! Tears are rolling down my cheeks as I read this. Praying...praying...praying...God bless all of you. ♥♥
ReplyDeleteWOW! Thats just amazing. God is so good. Continue praying for your sweet Selah and for you family.
ReplyDeleteIn tears! So happy that Selah responded! God is great!
ReplyDeleteYay!!!!! God is hearing our prayers for Selah!!! Hallelujah! :)
ReplyDeleteOh I am SO SO happy that Selah responded :*) *tears in my eyes* Thank you God for your healing touch!!! That is the BEST NEWS I could have heard today :)
ReplyDeleteI pray you get the answer from the hospital, whichever helps Selah the most!! We're here for you all! xoxo
Praising the Lord for today... praying for all the tomorrows. Excited about the hospital possibilities too! Praying, praying, praying!
ReplyDeleteBeen following since the adoption. Im a USF grad living in Temple Terrace. If there is anything I can do please let me know!
ReplyDeleteoh wow!! Never thought I would be so excited about a child expressing she is in pain! Praying for more improvements, her health and happiness!
ReplyDeleteSlava bogu! Still praying for her progress and continued provision for your family! Hugs!
ReplyDelete