The Neurologist Appointment

Written by lesabrackbill

We met with the neurologist this morning to receive further insight into the MRI results, and it looks like we will still have to wait for a certain diagnosis.

However, the news we did receive is devastating.

We saw the MRI images and the inside of Tori’s brain has shrunk, and there is fluid in the middle. The doctor said that it appears that she has some form of leukodystrophy – which is very serious and not always treatable. I am crying as I even type those words.

We will have blood work on Tuesday to try to narrow down what she is facing, but it doesn’t look good. She will also be seeing a pediatric ophthalmologist.

We need a complete miracle. We know God is bigger than this! But the thought that we might losing our baby girl is more than we can bear. We are trying to stay strong for her sake, but it is extremely difficult.

It can take weeks to get the blood work results back. This is going to be agonizing.

To make matters worse, if this is indeed a genetic thing, we may not be advised to have more children.

On the way home, a song came on that had the line “earth has no sorrow that heaven can’t cure.” We are pleading with God to fix it here and not take her away from us, though that would be the ultimate cure.

Please pray for our precious Tori. And please pray for us as we deal with this potentially horrible news.

http://www.facebook.com/prayingfortori

50 thoughts on “The Neurologist Appointment”

  2. Lesa, I’ve been following your journey through some D&Bers, and I’ve been praying for all of you, and your precious baby girl. I will continue to pray for complete healing! Have you posted there yet? There are a thousand believers that can lift you up in prayer.

    Heavenly Father, perfect Healer, we lift Tori up to you. The Brackbills need help. As Lesa has said, we know you love Tori more than they can imagine. We pray for a miraculous, complete healing for this beautiful child. We pray for life, and life abundant for her and her family. Please be with the doctors as they seek a course of action. Please be with the Brackbills to give them peace and comfort in a time of waiting. Send them your people to show your great love, grace, and generosity. Remind them that you are with them every step of the way. Heal her up, Lord. Heal her up…. Amen.

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  4. Oh Lesa. The moment I read devastating news, my mama heart broke for you. I cannot fathom the torture and heartbreak you are experiencing. I am so so sorry. I pray that God wraps you in His loving arms and fills you with peace that surpasses ALL understanding. I also pray for a miracle!! Know that your family is in my thoughts and prayers. Lots and lots of love from me to you.

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  6. Such great heartbreak can be eased only by our still greater God. Praying for a miracle, and for His unfathomable peace regardless of the outcome.

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  8. Oh Lesa, my heart is breaking as I read this. Know that Tori will continue to be in our prayers. The Lord is watching over your precious one. Sending love and hugs from the mountains of Centre County.

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  9. Wow. I’m so sorry. I’m praying for a miracle alongside you. Also praying for God’s strength, peace and comfort. Praying He will wrap His arms around you surround you with his grace.

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  11. I have no clue who you are, but Staci Baker used to be my teacher years ago and I seen this in my news feed. I just had my first baby born this July 2014 as well, so I could only imagine what you’re going through with your new baby. Prayers will be sent your way.

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  13. I know you do not know us but my husband and I have gone through something similar, twice and the feeling and thoughts that you’ve expressed are ones that we have struggled with as well. If you need any support or solidarity, we are praying and here if you need anything.

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  18. Lesa & Brennan &all family, my heart is hurting. We love you and will keep praying. I am praying for a miracle from God. He is in control.

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  19. So sorry you are going through this. My name is Dawn Knecht , I have been a member of the United Leukodystrophy Foundation since 2008 , http://www.ulf.org . Check out the website to learn more . We have access to all the top Leukodystrophy doctors in the world . I am also the mother of a child with leukodystroplohy . I have a Facebook group called Leukodystrophy , you can join us for support ♡

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  20. you dont know me but i saw this on face book. im sry to hear about Tori, i will be praying to God for his will to be done. thats what i prayed for my baby girl who was born with a working heart that ended up getting a virus a week and a half later.the virus almost took her life. the drs told us they didnt know what was going on or if she was going to make it.
    here the whole left side of here heart was not moving. she almost died that night… and a called out to God the God of Abraham, Issac, and Jacob. I told the lord that she was his not mine…. i just have the privilege of raising her in hopes that she will find him. that she will find Jesus. I said lord she is in your hands please allow her to stay with us. right then and there i had a peace come over me like nothing i have ever known. i told my husband that if he calls her home how bad can that really be? it would be the best healing.

    my daughter sparrow, got through that night and she was flown to another hospital for her heart. after being there for a while.. the doctors told us her heart was probably not going to ever recover. they told us she needed a transplant. she was 2 weeks old. her chances of surviving it were slim. she went through a surgery and a bunch of transfusions and a cath…. and awaited her new heart. why didnt God just take her… why does she have to go through all of this? i wanted to give her my heart. i wanted to take her place but i trusted the Lord. in the end i realized that there was nothing i could do… im her mother and i can do nothing but trust my God. so i did. it was ok with me, he had this.

    people will tell you that its ok she will get through this, but i knew only God knows… and putting my full trust in him was something i put on daily.

    i tell you this story because i want you to know that God has tori in his hands and thats the best thing and the only thing she needs. All of our days are numbered and he knows when he will call us home. he knew tori before he thought of forming her in your womb. there is a reason God has your family right where you are.

    I love you and i feel your pain.

    please know that i will be praying for a miracle.

    remember Abraham and Issac remember that kind of trust.
    psalm 18:6 psalm 31:14

    your sister in christ,
    nikki potter

    check out the MIRACLE of sparrow!

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    1. Your story will encourage Tori’s parents. I’ve been praying for her all week. It is so hard to see your baby suffer with any difficulties. May God’s will be done. He will give strength to go through this trouble. He will never leave us.

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  21. I am reminded of a song sung at our beautiful grand-daughter’s memorial service when she was born sleeping “When Answers aren’t enough, there Is JESUS!”

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  22. “Earth has no sorrow that Heaven can’t heal.” Amen.

    -“Come As You Are” by David Crowder

    Many prayers for the comfort of God’s arms and His family for you all. I had two different friends from two different circles repost your blog, so find rest in the fact that many are lifting you and your dear Tori in prayer.

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  24. I’m following your story through a mutual friend. I’m so sorry you’re going through this with your precious child. I can’t even imagine how you must feel. Saying lots of prayers for your family. Praying for healing, strength and peace that passes all understanding. You’re right, God is bigger!

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  28. This is heart-breaking…lifting you all to the Lord. “The Lord is close to the broken-hearted and saves those who are crushed in spirit”. The physicians are not God…praying for healing, grace and peace for you all. Will be praying…Elaine from Georgia.

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  30. I don’t know you, but we have mutual friends in kacey and Cameron. This is devastating to hear, and I know words are likely not much comfort. But please know that you have an army of pray-ers around you , who believe that god is bigger than this. Lifting you up, and standing in the gap with you right now.

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  32. I don’t know you, but my husband knows you through MHS. I am so sorry to hear this heartbreaking news. Praying for your strength and your daughter’s healing. Know that you—your precious family—are loved by an all-powerful God. He gives hope and healing. He will take care of you.

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  33. Prayers that the Lord keep you surrounded with comfort, love, patience and healing as you deal with this devastating news.

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  36. so sorry 😦 I’ve been thinking of you guys since i’ve heard the news. good people should not have to go through things like this 😦
    maybe i’m grabbing at straws here but …what if her condition is actually a symptom of something else? has she being checked for a bacterial infection of maybe she’s missing some kind of vitamin or hormone ?

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  37. Praying for you. The Piarullis (from MH) asked their friends to pray. I am joining in. We’ve been in a similar situation, and I know how hard it is, and so I have no words. It is a personal struggle you will go through- trusting God for each little step. I pray He will be your strength!

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  38. My daughter has cerebral atrophy. Her brain is shrinking as well. Recently, she was diagnosed with PCH type 1. My firstborn, my son, also had this. Meshelle is my 2nd child and the docs actually said it would be lightning striking 2xs in the same place for another child to have the same genetic disorder. The lightning struck twice.
    My third, a boy, is perfectly fine. Do not give up hope. Keep praying for your miracle. God id a God of miracles.

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  39. Hi Lesa,
    I’ve been following your recent blog entries and I am heartbroken for you and your family. I can see that God has given you great faith and strength and I pray that it continues. I am praying for a miracle for your precious daughter and peace for you all.

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  40. Praying that God will surround you all in his comfort and grace. He is bigger than this.
    Sending you many prayers and hugs!

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  41. Brennan and Lesa…Miss Tori ….I will share from my own experience…I will share about our faithful God…….This is what I know for a fact…This is the ultimate truth…God love never fails..His grace is greater than any mountain..His faithfulness is new every morning…He loves Tori even more than you do…no matter what I repeat no matter what the diagnosis. ..or prognosis. …or science..or experts………….God Almighty is our Great Physician…As long there is breath there is hope no matter what you are told ,no matter what the circumstances no matter how you feel…Our Father is the God of all HOPE…you are greatly loved you are wrapped up and protected by God’s Healing Light…In Him there is no darkness…we go this journey together arm in arm heart to heart faith to faith….we love you. ..Ma Jackie &Jeff

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  42. We love you and we are praying for you faithfully. “I will lift up my eyes unto the hills. Where does my help come from? My help comes from The Lord, the Maker of heaven and earth”(and of His beautiful Tori)…

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  43. I just heard testimony from my pastor about his son who had a tumor in his head that calcified and they could not remove…he was terminal and the started a prayer vigil and chain. He went back to the er in pain and had surgery only to find out the tumor had shrunk and was able to be fully removed. He is healed by prayers and faith. Have faith and I will pray for your baby!!!! God has the final say!!!!

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  44. Reblogged this on Nuggets of Gold and commented:
    Dear friends please take the time to read this and I encourage you to follow her blog.This is a dear friend of my niece’s who is going through a devastating diagnosis of her 6 month old baby rightn now. Please keep Baby Tori in your thoughts and prayers right now and her parents who are walking a journey that no parent wants to walk. The Mom Lesa is part of the WordPress family and I have been so encouraged by the wonderful bloggers I have met on here, so I am thankful that I know you will stand in the corner for Tori too!

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  45. I am so sorry to hear this devastating news. I hope and pray that God uses it to show his miraculous healing and mercy as he did with Sparrow. My prayers are with her and with you as her family. XXXOOO

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  46. I came here through joyroses. Know that all over the world, people are praying for you and your family. You might feel all alone, but we are here behind you in prayer. And most importantly, the Lord himself is there. Sending love.

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  47. I rarely pull up Facebook but tonight I felt compelled to do so. I don’t know the details other than the need for prayer for all of you. God is faithful and his love for us immeasurable. I will be in prayer for all of you and Tori.

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  49. Pingback: One Year Ago Today: The Leukodystrophy Diagnosis | The Adventures of the Brackbill Family…

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