About Us

In April 2010, our precious daughter Kaitlyn was diagnosed with Niemann-Pick Disease (Type A), a rare, fatal genetic disease with no cure. We decided to create this website for our family, friends and other families confronted with Niemann-Pick. It is our hope that we can help others by sharing Kaitlyn's journey. Our sweet girl lived a full life from July 1st, 2009 - March 22nd, 2012.

Monday, March 12, 2012

Strength and Courage

It's about 6:00pm on Monday and Kaitlyn is napping quietly right now. Lately, around this time of day I start getting anxiety. Last night was pretty difficult for Kaitlyn. She wasn't maintaining her oxygen concentrations well, they were down in the 80s consistently for awhile. Her alarm kept going off. She also had a fever and the valium and morphine didn't seem to help much either.

The sound of the alarm on the pulse/ox makes my heart jump. We've had to lower the level at which it goes off (it's now set to alarm if her oxygen concentration goes below 85 versus 91) otherwise it would be constantly going off.

Today she has been in the low 90s/upper 80s all day, even on full oxygen. This morning her gums started to bleed. She has a few molars that are still trying to come in but since her hemaglobin is low and her platelets are low (35), she just bleeds and bleeds since her blood doesn't clot well.  Then since she can't swallow adequately she starts choking on it. We've had to do a lot of suctioning and cleaning out hear mouth. Her feet and hands have been getting really cold, while her body is really hot with fever. A sign of poor circulation and her heart working overtime.

I feel closer to the end than I ever have before. I got to hold her in the rocking chair today and thought about the first time I held her at the hospital when she was born. She was so tiny and it wasn't that long ago, but it also seems like forever ago.

I am so tired from being up so much last night, but I really don't want to take a nap because I would be missing time with her and feel like I need to be watching over her.

I know that when it's her time, she will be ready and I will be okay. God will lift her up and she will be free from her body and able to do things that we couldn't possibly even imagine. Please pray for Kaitlyn to be comfortable and pain-free through all of this and for strength and courage for Chip and me.

53 comments:

  1. Oh Deanna...you are the strongest woman I've ever met. How blessed Kaitlyn is to have such a wonderful Mom (and Dad and baby brother!) We will keep praying that sweet Kaitlyn is comfortable and peaceful, and that when her time comes to go, it is without any suffering or pain. God has his arms tight around your family right now. Continuing to pray for Kaitlyn's comfort and your strength and peace. Sending our love your way. The Russells

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  2. Praying for you and the family very hard right now. God Bless Kaitlyn. I can't even imagine what your going through. You guys are so strong and so positive through this I am amazed by your grace. Thank you for letting all of us get to know your daughter. She is a true angel.

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  3. Prayers always, for sweet Kaitlyn and you guys.
    God will comfort her and lift her just as you said.
    Kimberly

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  4. Praying for strength for you and Chip. God bless her and your precious family.

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  5. praying for you and your family.

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  6. hoping for peace for your sweet angel & your family - stay strong - God bless all of you.

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  7. Deanna and Chip,
    You can tell by the responses you are getting that your extended "family" is with you and Kaitlyn. We pray for an additional burst of stamina for you and that Kaitlyn is savoring every bit of your love as she prepares to meet her heavenly maker. God, hear my prayers that Kaitlyn is without pain and sleeps peacefully before you take her into your arms.

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  8. My thoughts and prayers are with you all. Praying for comfort and peace for darling Kaitlyn and strength, courage and clarity for you and Chip. So many of us are sending love, prayers and strength to you, I hope you are able to take some comfort from us while you watch over your sweet baby girl.

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  9. You all are always in my prayers. It is amazing to me how so many people can fall in love with a little girl they've never met in person... I do love Kaitlyn, and am praying for her peace and comfort and yours as well. Laurie High

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  10. I think about Kaitlyn often and know she is so loved by so many people. Your strength is so amazing. I will continue to pray for sweet Kaitlyn. I will never forget her or your family.

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  11. Praying...
    Linda Dietz

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  12. I think I read this just a moment or two after you posted it (around 5:58pm) and I felt so strongly your anxiety, knowing it was right in the moment. I pray for her every chance I get. Today, after I read your post I looked out the large window to our cul-de-sac at the setting sun, and as I prayed and thought of her, a beautiful bluebird started dancing and flitting around on the sill in front of me. I felt like it was a sign.

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  13. Reading this latest update drums up so many memories. You see, young or old, the death process is roughly the same. My dad passed of COPD last May after battling the disease for years longer than doctors expectations. Toward the end he experienced a lot of what you are going through now. It is so emotional to experience as a child toward parent, and I can only imagine the feelings when it's parent toward child. To say I know how you feel isn't true, but I know some of those feelings well.

    I hope you don't mind, but we printed off a picture of Kaitlyn and placed it in heart frame as we want to see her precious face every day when we pray for you all and get ready to face whatever our own lives hold that day. She is such a precious gift to so many people's lives that's for sure. I know that having that knowledge doesn't make this journey any easier though. So I pray for you to be able to find comfort under the shelter of God's wings. May He continue to walk the path before you and guide your steps.

    Love from WA,
    Paul and Anjel Tomayko

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  14. Lord, We ask that you keep Kaitlyn comfortable. She is surrounded with so much love. I ask that you give Chip and Deanna supernatural strength as they care for Kaitlyn. Comfort their hearts and give them your peace that passes understanding. Thank you Kaitlyn's incredible life. She has touched so many lives including mine. I will never be quite the same.

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  15. Praying for your family.

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  16. My prayers are for you and your little girl this evening. God bless your family in this time in your lives.

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  17. Praying for you and your family and your sweet daughter.

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  18. I can only echo what Anjel said earlier! Love, strength, and peace to you and yours! Gigantic hugs to Kaitlyn!!! God bless you and Chip for your devotion and commitment to your children. My heart is breaking...

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  19. We have been keeping dear Kaitlyn and your loving family in our prayers...you and Chip are such an inspiration to us!
    May our loving Father give you and Kaitlyn comfort and peace!

    Nancy & Wayne Lewis....Concord, NC

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  20. Praying for you all

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  21. Keeping you all in our prayers.

    The Lizotte Family

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  22. Deanna,
    You probably don't remember me. I was a Freshman when you were a Senior and I think you might have sung in chorus with me. I wanted you to know that I have been following your precious Kaitlyn's story and it has touched me and I have been praying daily for her peace, comfort, and for strength for your sweet family. My small group, my Ladies Bible Class, my Working Moms group and my church know about sweet Kaitlyn and we will keep praying. God's richest blessing even in the hard times. God draws near to the broken hearted. He is there and He loves you both so much! Hold on to that!

    Kim (Shepherd) Hassmer

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  23. I'm constantly praying for Kaitlyn, you, Chip and Cole daily. You and Chip have shown such amazing strength for Kaitlyn and Cole.

    Praying God continues to keep Kaitlyn as comfortable as possible and pain free.

    Stacey

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  24. Praying for strength, comfort and peace for you all.

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  25. I Pray for and think of yall daily!! i even sometimes am at a loss for exactley what to pray for at this time. BUT, I always speak sweet Kaitlyn's name. I will forever changed because of her because YALL took the time to SHARE her. I plead the blood of Jesus of her. Sending Love, Hugs, and prayers to you all.

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  26. Thinking of you and praying for your sweet angel.

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  27. Continuing to lift your family up in prayer.

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  28. We love you Kaitlyn!!
    The Toone Family

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  29. I think of & pray for Kaitlyn several times every day & night...i love you Princess Kaitlyn!!!

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  30. Prayers for you all.

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  31. Chip & Deanna,

    You are amazingly strong. God will provide you with the stamina needed to enjoy these precious moments with Kaitlyn. We pray regularly for Kaitlyn's comfort and peace and for your strength.

    Nanci & Mike Glassman

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  32. Breaks my heart for Kaitlyn and all the family. Though I cannot physically do anything for her or you, I can pray. I do believe in miracles, He has shown them to me via others. "Father, I know you are there with Kaitlyn and her family and that you can control everything especially what they are all enduring. Give this family Your strength, Your love, Your compassion and Your powers of healing to this sweet child of Yours. This I ask and pray in the Holy name of Jesus our Lord, our Saviour, our Redeemer and our Great Physician. Amen...and Amen.

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    1. God bless you, Joe! Very well said, and I am in complete agreement with you.

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  33. such a sweet baby girl, such a sweet baby brother. how i pray for Kaitlyn. i hear how torn you are, how exhausted (in ways the majority of us cannot even fathom), and i pray for peace. may Kaitlyn rest easy tonight. much love to your whole family during this extremely difficult journey.

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  34. I pray that she is peaceful and pain free and that you and Chip stay strong and positive. I

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  35. Been following your story for awhile now, but first time commenting. Just wanted to let you know how much your story has affected me. I'm a better person for having "known" Kaitlyn. Thank you for being brave enough to share her with the world. I will never again take a single day for granted. Your (and her) strength continue to amaze me. I wish you peace and strength.

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  36. I hope God will continue to sustain you through these difficult days. God bless Kaitlyn. Sending you so much love.

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  37. Prayers for her safe and painless passing, and for strength, courage, and healing for you and your family.

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  38. Praying with all of my heart and soul!

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  39. God Bless you on this leg of your journey, as you already know, God and His Angels are right there. You have carried your cross so graciously, just as Jesus did, and I am humbled by you.
    Love flows out of all your pictures and words,and only love is shared on this site. God will see you through, as He has since the beginning. Love and Respect to you, XoXo

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    1. My heart is breaking for you both. You and Chip are amazing parents and Kaitlyn and Cole are so fortunate to have selfless loving parents like you. I pray for continued strength, courage to deal with what ever comes your way and the comfort of the Lord's presence in your lives. Love you all Denise

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  40. God keep you in His tender care, through the dark watches of the night, and the interruptions of the tyranny of the urgent during the day. God our Father is keeping your tears in His bottle and in His book. He alone truly knows the deepest agony you feel. He gave His Son, and watched Him die, for the whole world; sinless, His precious lamb. Psalm 56: 8-13 has been a precious treasure of God's word to me because it is more evidence of God's incredible care of my deepest pain. He who makes the winds and the waves obey with "Peace Be Still" is also the One who holds Kaitlyn, Cole and you by the power of His Love and Grace, Mercy and Peace. May He continually make you aware of His presence, and His tender love every moment, and comfort your heart and spirit continually. Oh Sovereign God, the embodiment of Love, keep these children who love you in Your Tender Care.

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  41. Praying for you through my daily routines. As a mother myself, I feel so many mixed emotions for you. You both are incredible and have an incredible faith that many have seen and felt. I'm sure sweet kaitlyn has felt God through your touch, prayers, and strength! I am drawn to Job in the Bible because I feel like his incredible strength and faith are what the two of you are sharing during these days. Many prayers of continued faith, strength, love, and peace throughout the next days, months, and years.

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  42. I want to tell you how Kaitlyn changed my life. I don't know you, and we have never met, but my life is literally changed for the better by your sweet, corageous, beutiful daughter. You see, before a friend posted your blog on Facebook, I wasn't sure if I believed in God. I wanted very much to believe, but I had trouble surrendering myself fully to the notion. Kaitlyn's story has strengthened and solidified my belief in God. I know in my heart that God sent her here to be His messenger that He is real, and he chose you as her parents because he saw in you the special strength and devotion needed to guide Kaitlyn through her brief journey on earth. While I am deeply saddened that Kaitlyn's time among us is coming to an end, I am heartened by the knowledge that she is surrounded my angels -- both the celestial kind and the earthly ones that are her parents, hospice nurses, and other caregivers and family members. I hope you'll whisper my heartfelt thanks to Kaitlyn for changing my life, for making me a better mom to my sweet son, Sawyer, and for proving to me the presence of God in my life. I pray for her peaceful and painfree break from her earthly bonds so that she can be carried to heaven, where she will be free to run and play and eat ice cream and sing songs, secure in her knowledge that her important work on earth is complete. I will never forget her, or you for sharing her story. Thank you and God bless you all.

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  43. I pray peace, rest, comfort as you say goodbye.

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  44. I will be thinking of you in a special way today and keeping little Kaitlyn in my prayers as well as the whole family. God is holding you all in the palm of His hand. Praying that Kaitlyn is comfortable and pain-free and resting well and that you will have some time of rest, too. Thank you for sharing her story as well as your own. Take Care!

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  45. May not be at the Vigil, but thinking of you all and praying for Kaitlyns comfort... :)

    Sending love and prayers your way.

    Stacey

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  46. Praying for you and your family. May God comfort ALL of you in this time of need!

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  47. Bless you all with the knowledge that the good Lord in heaven is with you all at this time. (it was when you were at your most troubled that there was only one set of foot prints in the sand, for then I carried you!)

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  48. This breaks my heart! My kids just battled the flu, and every little noise they made through the night, my heart was pounding and I was running to their aid ... I just dont know how you do it! GOD BLESS YOUR FAMILY IN THIS DESPERATE TIME! Michelle Schaffer

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