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| This morning |
Katilyn's body is shutting down. She is no longer able to tolerate any food/formula through her G-tube, only medicine and a little bit of water. We have had to pull out bile that has backed up into her stomach using a large syringe into her G-tube. Her body just can't breakdown or absorb the food.
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| This morning with Gigi and Daddy |
We are looking into a patch that we can put on her arm or back that can release pain medicine rather than putting it into her stomach. Maybe it will be absorbed better through the skin and into the blood stream.
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| Yesterday after a nice cool bath |
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| Yesterday with Memere and Pepere (Chip's parents) |
One thing we noticed last night was that her diaper had what looked like blood (dark pink) in it. Jordan, RN with hospice stated that she had seen this before and that it is probably a sign that the liver is shutting down.
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| Cole saying "hi" |
All things we know are going to happen but actually seeing it happen is beyond difficult.
We are trying to make her as comfortable as possible. It's really hard as a parent to not feed your child, even when you know it would harm them if you did. Our natural instinct is to comfort, nourish and protect our children.
Please continue to pray for peace and comfort for Kaitlyn during this time.
We continue to send prayers, but wish we could do more. Just know that there are many people following your family's journey and praying for your strength.
ReplyDeleteNanci & Mike Glassman
prayers for peace and comfort for all of you.
ReplyDeleteEvery time I woke up last night, I prayed for precious Kaitlyn and your family. I will continue to pray all day today. I know there is nothing I can say that will take away the pain you are feeling as parents, but just know that you have a lot of support. I know that God is holding you in his arms.
ReplyDeleteDeanna, there really are no words to adequately convey how terribly sorry I am. I will continue to pray for beautiful Kaitlyn and your entire family. Continue to have faith that God will guide you and Chip to make the best decisions for Kaitlyn. Kaitlyn knows you are both with her and is comforted by your presence.
ReplyDeleteI pray for some peace to come to all of you. I cannot imagine the strength it must take.
ReplyDeleteI am praying for you all. I have shared your story with others and they are still praying for you and your family. Wish I was there.
ReplyDeleteLove you guys, and may God be with you and Kaitlyn to give you peace and comfort.
Kim Taylor
Praying for peace,comfort, and strength for all of you during this difficult time.
ReplyDeletePraying for comfort for all of yall.
ReplyDeleteShedding tears for you and your family, Deanna. Praying for comfort for sweet little Kaitlyn... even during such a difficult time for her body, I pray that her soul be at peace. May God's Presence be with you all. Love and prayers from SC...
ReplyDeleteMy heart is breaking for all of you. My wish is that Kaitlyn feels all of the love surrounding her.
ReplyDeletePlease know that we are praying! There are no words...only God's comfort and protection.
ReplyDeleteDeanna, I pray that you and your family have the strength to get through this difficult time. As a mother, wife & a nurse I cannot express how much this breaks my heart. You have done an incredible job at raising awareness of Neiman Pick disease. You are an incredible woman & Kaitlyn is blessed to have such a wonderful mother just as you are blessed to have such a beautiful daughter. Myself and my 6yr old daughter, Makayla, will be saying a special prayer for Kaitlyn. Continue being the strong and loving mother that you are.
ReplyDeleteIts hard to let go..........I hope she finds a peaceful sleep soon.
ReplyDeleteI can't even imagine what you are going through at this time. Words cannot express how my heart is breaking for you. Beautiful little Kaitlyn is so lucky that she has you by her side. You are constantly in my thoughts. I am praying for Kaitlyn's comfort and peace.
ReplyDeleteAli Reardon
I am so heartbroken knowing what you are going through. I wish there was something I could do.
ReplyDeleteRichard Ricci
Just know that God will never give you more that you can bear.
ReplyDeletePlease God, wrap your loving arms around Kaitlyn and her special loving family giving them peace, comfort and calm.
God choose our daughter to be in Heaven to take care of the sweet precious Angel Babies.
I have been following your blog from Adam Cook's fb posts. You all are an amazing family and I am thankful for your blessings and miracles. I am praying for your family and sweet Kaitlyn. May you feel God's power, love and comfort during this time. May God's sweet peace surround your family. In His love, Ali Farabee
ReplyDeleteDeanna, We continue to pray for you, Chip and Cole. Our hearts are breaking for you. May God be close to you all and to sweet Kaitlyn at this time. Sarah Russell
ReplyDeleteChip my prayers go out to you an Deanna for little Kaitlyn.God always takes care of his little children
ReplyDeletePraying for peace, comfort and strength during this very difficult time. Thinking of you and the family daily and praying also.
ReplyDeleteTwinkle twinkle little star
ReplyDeleteDo you know how loved you are?
Like a diamond in the sky
Forever shining in my eye
Twinkle twinkle little star
Do you know how loved you are?
Sending all our love you way. Xxoo Steven, shannon and wylder
I have no words. You are a strong family. May God bring you peace and comfort during this time. Your family is an inspiration to others.
ReplyDeleteI am praying for you and your entire family in this difficult time. I have been through this before. I lost a child and its the hardest thing. If you need anything or just to talk please let me know. Sending prayers your way..
ReplyDeleteI stumbled across your blog, after finishing a book written by a mom who lost her little girl to NPA ("Butterfly Kisses", Jessica's Journey, by Julie Tucker) and as struck by what an angel your little girl already is. She is beyond beautiful. Her little spirit shines through and she will surely light up the heaven. Blessings to you all. Michele
ReplyDeleteI pray for you, Deanna, and know that only the strength of Christ can possibly help you and your family through this time. God bless you all, and I pray that Kaitlyn feels the peace of comfort of Jesus. Catharine, friend of Jennifer McMinn
ReplyDeleteJohn 14:27 I am leaving you with a gift-peace of mind and heart! And the peace I give is not fragile like the peace the world gives. So don't be troubled or afraid.
ReplyDeleteJohn 14:18 No, I will not abandon you or leave you as orphans in the storm-I will come to you.
Psalm 46:1 God is our refuge and strength, a very present help in times of trouble.
Psalms 30:5b Weeping may endure for the night, but joy comes in the morning.
I am praying for a miracle which I whole heartedly believe is possible!! God give you wisdom, strength and peace!!
I cannot pretend to know the pain you are feeling right now but I do know that as great as your pain may be, God's grace is greater still. No matter how much you are suffering, God will see you through, for He is the "Father of compassion and the God of all comfort, who comforts us in all our troubles" (2 Corinthians 1:3-4). Continuously praying for you, your family, and your sweet baby girl.
ReplyDeleteI can't even imagine what you and your family is going through and I wish more than anything there were some inspiring words that I could write that would help ease the pain, but I know that is not possible. So I will only leave it in God's hands and keep you and your family in my prayers. God Bless You!
ReplyDeleteI have just come across your blog via Facebook the other day, and i can't stop thinking about your family and your sweet little girl. I do believe in miracles so i will pray that your little angel will experience one! I really can't imagine what you as parents must be feeling right now, but i can pray for strength and peace for you and your sweet angel! I wish i could do more to take her suffering away!
ReplyDeleteMay God watch over Kaitlyn n give all of you strength during these trying times. She is so beautiful! I love her hair! You guys are great!
ReplyDeleteDeanna & Chip,
ReplyDeleteMy heart hurts for you & your family! I can't even begin to imagine the pain as parents you are going through. May God continue to give you strength you need. We will continue to pray for your sweet angel Kaitlyn. Cindy Ricci
I am so very sorry for what your family is going through. My prayers are with you in the very difficult time, God Bless you all!!
ReplyDeletePraying for peace for your sweet little girl, and for the comfort of your family.
ReplyDeletePraying praying praying...I am so very sorry and sad for all of you.
ReplyDeleteLinda Dietz
Your little girl is a special friend to my grandson. Her picture is in his playroom and it has some times held vigil at his bedside when he was in the hospital. I admire the strength, dedication, perseverance and love you have shown for your daughter. A beautiful demonstration of devotion of the best kind. I wish for you peace and strength. With gratitude for unseen blessings,
ReplyDeleteCatherine, aka Wylder's Gran
Thank you for sharing Kaitlyn's site so that many folks could get to know her. She is beautiful, as is your little boy, and my heart is breaking for your family. I pray for her to have no pain, and to know how much she is loved. I pray for God's comfort and peace to surround all of your family.
ReplyDeleteStill praying for your beautiful little girl.
ReplyDeleteGod's peace be with you all.....
ReplyDeleteI pray that God will take the pain and suffering from your precious baby girl. He is a Healer! May God be with you through these hard times.
ReplyDeleteShe looks so precious in those photos. I just cried my eyes out seeing sweet Cole looking at her and touching her face. I can't imagine how hard this will be for him too. Im so glad he will have all of these wonderful pics to remember his sweet sister and know she loved him. I hope you know Im here for you if you need anything at all. I will be home Weds from New Orleans and am just a phone call away if you need anything!
ReplyDeleteI don't know how I found your blog, but I did and wanted you to know that I am thinking and praying for you all in this very rough time. It is a road that no parent should ever have to travel, but from what I have seen, you are doing a wonderful job with your daughter. She is very beautiful and you can tell she is well loved.
ReplyDeleteAll of my prayers to Kaitlyn and you and your whole family.
i send love.....
ReplyDeleteMy heart is just broken for you. Prayers continue. And, I am so thankful that Kaitlyn and you (your immediate family) is surrounded by such amazing love.
ReplyDeleteGod Bless you and your family, and little Kaitlyn. We will keep her in our prayers.
ReplyDeletePraying for healing for all of you. Kaitlyn is sailing on the sea of your love for her. God bless all of you.
ReplyDeleteOur family is praying for all of you. May God grant you and little Kaitlyn peace and serenity.
ReplyDeleteIsaiah 41:10, “So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.” (NIV)
In Jesus' Name, The Kelly family
You don't know me, I read about your family from Rebecca Wood's FB page, she and I go to church together. I just wanted to let you know that I am praying for you and your family. Your courage, love and faith are remarkable. I don't know what else to say except that I will keep praying for you.
ReplyDeleteOur family is keeping you all in our hearts and prayers.
ReplyDeletePraying for your precious little girl.
ReplyDeleteMay God bless each of you.
I heard about your site from Catharine Walters; my oldest best friend who I believe knows you all from cheering..I spent the better part of the day reading your stories. You amaze me with your courage and you inspire me with your faith. God Bless and be with you all during this difficult journey. Your family is beautiful and I will keep you in my prayers. Sandra Filer
ReplyDeletePraying for peace and comfort for your beautiful Kaitlyn! May your family stay strong. Kim W.
ReplyDeleteDeanna,
ReplyDeleteI have sat here quietly praying since reading your latest news. Your family's strength and love for Kaitlyn has been so evident; so steadfast. May your faith continue to bring you strength this week.
Sending love from Yale-New Haven,
Linda