Tori had her eyes dilated this morning for her ophthalmology appointment this morning. She did not enjoy that. 😄
The anatomy of her eyes looks great – no indicators of any neurological diseases…yet. However, the doctor said that based on the MRI she wouldn’t be surprised if her vision has deteriorated.
The doctor said that if she ends up having Krabbe’s Disease, she will likely go blind. So that is another thing to pray against.
She then had a swallow study at 11:30am, and she didn’t like them putting her in the high chair to try to feed her there. I told them it wouldn’t work 😉
We waited for a few hours for the results…and they aren’t what we wanted to hear.
Tori is aspirating when she swallows, meaning that it is going into her lungs. She also has no gag reflex. This means that she will have to be fed by an NG tube for now and possibly have to have a tube inserted into her stomach eventually. They did not seem optimistic that this would ever be healed because these muscles are controlled by her cranial nerves, and those are obviously not working.
To say today has been tough is an understatement. I will never get to breastfeed her again. She will likely never eat through her mouth. It seems like each day we find out that something is wrong with our previously healthy baby girl, and we are devastated.
Please continue to pray for a miracle.
Even So, Joy 
My heart aches for your family! Praying that you will all lean on the Lord during this difficult time.
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I don’t know you or your family, but have been following your blog and Facebook posts this last week. I just want you to know that I am praying for you, your family, and Tori. We believe in a God who is bigger than us and who loves us more than we will ever know. He hears your cries and sees your tears. “For I know the plans I have for you (Victoria), declares the Lord, plans to prosper you (Victoria) and not to harm you (Victoria) to give you (Victoria) a future and a hope.” Jeremiah 29:11. I will continue to pray for you and ask my church to do the same. Also, do you still swaddle Tori? I make hand stamped bamboo swaddle blankets and would love to make one for Tori. Blessings!
Katie
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we are so sorry for all the bad news.Just know that we love you and that you are always on our mind. love gma and gpa
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You are sooo much in my thoughts each day. Much love coming your way. Hoping tomorrow will be a better day for all of you! xoxo
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I am so heartbroken for you. You are all in my prayers often. I am grateful that Tori is so loved.
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Jesus came to heal the brokenhearted!! I am SO SORRY about everything, continuing to pray and having others pray for you too!
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Know you are in my thoughts & prayers every day. I pray for a miracle for Tori and I pray for you and your husband. Your entire family are in my prayers. I have added Tori to our prayer list at our church in Cisco, Il. May God continue to walk with you through this difficult time. Cindy Pierce
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I am so sorry you are having to go through this. Love you. Still praying for God’s provision and strength.
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Praying that Tori proves the doctors wrong & continues to come out swinging!!
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I have been following the story your sweet angel since I had seen a post by Cheyenne. I check every day for updates. I think about your beautiful little girl and your family all time. You are all in my prayers and will continue to be. The power of prayer and love is amazing. I believe in the power of GOD and I believe in miracles. GOD bless you all. Jesus loves you Tori. You are a child of GOD. May the angels wrap their arms around you and comfort you.
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So very sorry your hearts know this pain. Praying for a miracle and for your faith to be increased.
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Oh, dear Lesa…praying for you and your husband and precious little Tori. Praying, praying, praying. 💕
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That’s just so devastating, I keep saying I’m so sorry, but it’s not enough to say how deeply this just hurts my heart for you. Prayers will continue to be lifted up!
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I’m praying for you and your precious baby!!! I can’t imagine what you must be feeling right now. I pray that God heals her little body and comforts you all during this difficult time! ❤
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Praying with you, and for you tonight.
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Praying just now for you all. May you feel God close…xo
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Praying for you just now…May you feel God so very close and know you are so loved…xo
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Praying….”…for the wisdom of the world is foolishness to God”. Asking God for healing for Tori that the world may know that HE is Jehovah Rapha.
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I have been following your story this week and although I don’t know you I have cried just thinking about what you must be going through. I am praying Tori’s health improves, that her doctor’s are wise and that you are the strong Mommy she needs right now. Cuddle that baby all day!
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Praying for complete healing of your precious little child. God is wonderful !!!!!
God bless you all !
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Thank you for being honest and sharing your pain. Our love for you and Tori and Brennan wants to take away this pain, as your precious overwhelming love for Tori wants to take away her pain and problems too. All I know to do from here in the States and from Mozambique is to say, “You are loved and I am praying.” May God’s sufficiency uphold you during this time when everything else might seem insufficient. Hugs.
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I woke up in the middle of the night and your family and what you are going thru was on my mind, having gone thru similar situation years ago and our son Tommy was taken home at age 14. I understand your agony and praying for mercy, grace and peace. Yes, peace is possible and with all the prayers going to our great God, I have no doubt you will have peace at some time, however the road you are on, is the hardest road ever, I think, in this life. But I also know you and Brennan have been hand picked by God to be her parents, you are and continue to be the best parents in this entire world for Tori, and know it is and will be a blessing, not to mention hard, but Tori has been chosen to be yours. When you think of that it is a blessing. During this time there will come many blessings, different from what the world could see, but you two will recognize it, treasure it always. My prayers will continue to be with you, as thousands of others are praying as well. You both have been chosen for a very special time, but believe it or not you will be blessed, you will feel every emotion God has created in us and God knows how difficult this road is you are on, but He is walking every step with you. The whys, we will never understand until we reach our heavenly home. Just remember, no one can be the best parent to Tori than you two. Praying and loving you .
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I am so sorry to hear of this devestating news, Lesa. Honestly, I can hardly imagine how much you are suffering. God is able….and we have Him to completely trust and rely on for strength and comfort. I will be praying for a miracle for Tori and for peace for you and Brennan as you deal with this more than difficult situation. With much love and concern.
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Im praying for a miracle for u! For gods healing hands to swoop down and cure u of your ills. The lord is good and kind and does not want u to suffer!
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Good Morning….You your family and Tori are being put on the Prayer Network of our church, The Reformed Church of Shawangunk. Many prayers will be coming your way.
We pray that God will place his loving hands around all of you, comfort you and really make his presence known. Amen
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Praying for you and your husband and precious Tori.
>
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Praying for your little Dear One in Albuquerque. Praying for miracle.
Praying for you too.
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Our church in Millersburg, Indiana, has put your family on our prayer chain. Praying, praying, praying for all of you.
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So sorry to hear all this. Praying along with many others for you!
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I just read Pennsylvania has a law that they are to test all newborns for Krabbes disease. I wonder if they did that test on little Tori? And if not, I wonder why not? Praying for you all!!
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It just went into effect!
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Col.1:9 For this reason also, since the day we heard of it, we have not ceased to pray for you and to ask that you may be filled with the [a]knowledge of His will in all spiritual wisdom and understanding.
I am praying for your sweet, Tori. He is able and I believe. Since I have heard, you and your husband have been on my heart. I will continue to pray and fast for your baby, and for you to know that the Lord is your strength.
Isaiah 40:28-29
Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak .
My hope is that you can find some rest in his promises. Praying His Spirit brings you comfort.
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Brennan…don’t know if you remember my husband, Doug, and I. Dustin and Nala are our children that you counseled at CRC. We are distantly related through my husband. Anyway…we have been following you and praying. God can do great things. My father was a walking miracle for many years. Our prayers will continue for Tori, you and your wife.
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Holding Tori, her parents, and family close in our hearts. We don’t know each other except through a fb friend who posted your story. Thirteen years ago our preemie twin daughters had us on the scary medical roller coaster ride, different, but similar, to your journey. I remember well the tight throat and hollow gut feeling of uncertainty, the emotionally and physically exhausting days at the hospital, and the complete dependence on loved ones to get us through. May you feel the ever-present care and love of God through those closest to you.
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Praying for your beautiful baby girl! I believe God has a purpose for every person and a reason for everything He allows to happen in our lives. Keep leaning on HIM.
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Your little girl is precious!!!! Going to specialist after specialist is mentally and physically exhausting!!!! If you have a pump your little girl can still get breast milk I dropper fed BM too my little guy for 6 months I enhanced it with duocal formula and thick it To give him the thickness he needed not to aspirate but still get the calories he needed! Feeds became more and more a struggle we had a Mickey button g tube placed almost 3 years ago! Because of that feeding tube my little boy will see his 5th birthday!!!! I fought the tube placement for a very long time selfishly now I see that I was only holding him back! He is thriving now and is able to enjoy playing with and tasting food without it being a fight for calories! Best of luck! It’s feeding tube awareness week feel free to ask me anything!!!!
With love luck and prayers Trista from Phoenix NY
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