Kaitlyn has been doing fairly well this week. Her pain seems to be managed well, which is really great! That is the last thing we want for her. She did spike a fever again and was crying when she would urinate, so she was put on Trimet, an antibiotic in case of an urinary tract infection, which she has had a few in the past. At this point, we know that if she is crying while on the pain patch, she must be hurting! So we started the antibiotic and she seems more comfortable and has been sleeping most of the day and night.
When she is awake, we've been listening to Disney's Princess Songs CD, which she seems to LOVE. She even falls asleep to them. We also read books, especially the ones that rhyme, like Dr. Seuss. Great Day for Up! is my personal favorite. :-)
So speaking of books. I decided awhile ago that I am going to write a book about Niemann-Pick Disease, Type A. There is so little information out there, whether it be from medical professionals or the internet, on what to truly expect and what day-to-day life actually looks like with a child with NPA, that it is really something that needs to be done.
I have asked Dr. Melissa Wasserstein, an expert on NPD, of Mount Sinai Medical School if she would be willing to help and she said she would help out in any way possible. I envision the book to be half medical knowledge/fact (that is where Dr. Wasserstein comes in as the expert) and the other half about what families have experienced and the advice they have to give to those who may have a child who was recently diagnosed.
I think so many people could benefit from a book like this, not only the family but medical professionals, genetic counselors, friends and family who want to understand more about the disease and what the family is going through. I don't see this as some small book or small undertaking. It will require a lot of research, time and working together with other families who have or have had a child with NPA who are willing to share their stories with me.
Right now, Kaitlyn is my main priority and I hardly leave her side, but I will make sure this happens one day and that we can help those who feel lost when their child gets diagnosed with NPA, like we were. We had to find out for ourselves, through our own research and talking to other families, and pushing for answers, etc. Not everyone has that in them or even knows where to start. If there was a book that could help them, I am going to write it. If it's meant to be, it's up to me.... and God. :-)
So glad to hear sweet Kaitlyn is resting peacefully - will continue to pray for peace and comfort. Deanna, you are simply amazing. Each of your posts is more toughing than the one before. You are going through such a difficult time and still manager to think about how you can help others. I admire you for your bravery, courage and honesty. Your family has made me change the way I look at life. I thank God for each day I'm here and try to make the most of each day whether it’s working or spending time with my family. Thank you for sharing your story with all of us. Sending much love from my family to yours – RVA.
ReplyDeleteI think you would write a wonderful book. As always, thinking and praying for peace and comfort for Kaitlyn and strength and peace for your family.
ReplyDeleteLove the book idea. It is really needed. With such a small NPA community, the resources are very limited.
ReplyDeleteYour pics today was wonderful. Love the bows!!
Nanci & Mike Glassman
Your pics today were wonderful!!!
DeleteNanci
My book was published in Dec and its on Amazon. Butterfly Kisses:Jessica's Journey. It's our raw real life journey through our daughter who had NP-Type A also. Proceeds go to the Ronald McDonald House!
DeleteYou are such a strong & awesome mom. I have 4 kids & I cant imagine what you are going through. Your family is in my prayers
DeleteDeanna, you are an inspiration to us moms. I will be praying for God's whisper upon your heart for that particular journey. What a gift such a book will be!
ReplyDeleteSo thankful that Kaitlyn is doing well. Always praying, always thinking of you all.
Deanna - I am so happy to hear that Kaitlyn is feeling better. It is all we wish for her - that she is pain-free and at peace. If there is anything your blog followers can do to assist you when you are ready to begin writing, please, please let us know. We would like, in some small way, to return some of what you and your family have given us. I began following Kaitlyn's Korner off Dawn Fudge's blog about Liam. Shortly before that I had participated in a Pepsi Challenge to raise funds for San Fillipo Syndrom research. Another disease I had never heard of until we learned that my husband's nephew's wife's cousin has two children afflicted with that (also genetic and fatal) disease. There is so little public awareness of these rarer afflictions, so I am assuming the research dollars correspond to the awareness level. Anything you - wait, make that WE - can do to eradicate these horrible types of killers is welcomed. I believe that it is our obligation and our privilege to try to leave the world a better place than it was when we came into it. Kaitlyn is doing that in spades - mega-thanks to you and Chip for giving her a voice.
ReplyDeleteSo thankful for peaceful, restful days without pain...I know how much that means to you as a mom.
ReplyDeleteKeep God as your focus through this tough journey. Many are praying.
So glad she is comfortable! Awareness and information is vital for all involved - doctors, nurses, therapists, and of course the family. May God provide guidance to you.
ReplyDeleteThank you for your update and sharing your beautiful daughter with us. Always praying for Kaitlyn and your. Family
ReplyDeleteDeanna, I've thought for some time that you needed to publish your blog. I think you've already written it in an informative AND truely raw and real life READABLE manner. it's already begun to do what you say you hope a book would.....Turn this journey into your book :) It's powerful.
ReplyDeleteWas glad to read that Kaitlyn seems to be comfortable. My family and I pray for comfort and peace for her, and for the family. I have a hard time reading some of what you write, just because it saddens me. I won't pretend to understand why Kaitlyn has this, but I do know that I am completely stunned by many things about you all. The fact that when I first read about her, I felt as though I just needed to stay in the loop as best I could...the strength and determination that you all show, even in the face of this illness. I am truly moved by you all. I know that when you write your book, no stone will be left unturned, and undoubtedly, you will greatly aid and affect many people. God Bless Kaitlyn, keep her comfortable and as pain-free as possible, Lord. Look down on her with Love and Compassion, as well as Deanna, Chip, Cole, and all their family. I know...that Kaitlyn will hold a special place in Heaven, because of the lives she touched while here, including mine. Take care, love and prayers headed your way from out West...
ReplyDeleteContinuing to pray for Kaitlyn and your family. A book...what a wonderful idea. You certainly have the gift of writing. We love you! The Russell Family
ReplyDeleteHi Deanna,
ReplyDeleteYour photos of Kaitlyn are precious. Her sweet and gentle nature shines brightly as she rests dreamily, snuggling her cuddly friends.
I'd love to collaborate on the NPA book with you, Melissa and other NPA families. Writing a book about Sophia's Story is on my list and I'd be honored to work on a group project instead. There is much to share on many levels that could benefit others facing similar circumstances. When you're ready, feel free to get in touch.
Holding all of you in our hearts.
Warmest,
Karen