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Spencer’s Story - continued from page 1 WAITING, WONDERING AND PRAYING.... 11/3/03 - The baby, Spencer, is breathing well on the ventilator this morning - he is very weak though and no information has come back to the hospitals from specialists on how to help him - they are now waiting for a genetic specialist to send word back . Apparently the hospital took a lot of photos of the baby for their family history book and when Jack gets me the pictures I can post a few of them on the web. I sure appreciate everyone's help. Jack and Brenda are so sweet, they see a friend in everyone and would love visitors. I think they don't dare move the baby to another hospital, they didn't expect him to live this long. One thing that was mentioned was that the other children are in need of clothing (note: this need has been now taken care of). The children still at home are: David - 5, Ezra 8, Nanny 10, Jay 13, and, of course, Spencer -newborn. IS TIME RUNNING OUT? The medics have checked everywhere for information on how to help Spencer. There is one last place they are waiting to hear from, and that is from a Neonatal Genetic Specialist in Columbia. If there is no hope or suggestions offered, they will take the baby off the ventilator. He is so tired, but he can reach out and grab his mother’s finger and peek out of his little eyes. He is breathing well on the ventilator but has so much medically wrong with him, Jack says he is really struggling to stay alive. Oh please pray hard for this family. IT’S HARD, BUT WITH GOD, NOTHING IS IMPOSSIBLE.... I talked to Jack this morning and he said again to tell you how much he appreciates your love and caring for his family. I think it is beginning to sink in just how severe the problems are. I talked to a hospital medic and she told me the baby is listed as fatal. That is as bad as it gets. The hardest part for the family is that the baby looks beautiful, though tired and it's hard to believe Spencer is in such serious medical condition. SADNESS AS REALITY BEGINS TO SET IN.... This was a baby that was hoped for and well loved before it ever got here. I can't imagine how hard it is for Brenda and Jack - if it's hitting me this hard, and I have had to handle a lot of rough cases over the years - how can it be for them? I have been hugging my own children a lot today. .It's going on for midnight and I am now able to get back to my E-mail. I have been on the phone all day working to resolve some concerns regarding the needs of Spencer's family. They are such good folks and I am grateful for the help that has been offered. WORKING THROUGH IT Thank goodness for loving friends and compassionate people. I am really appreciative and I know that the family is too. I told Jack that we were working on finding a Samantha doll for Nanny and his voice broke as he quietly expressed his sincere appreciation and love for the efforts on behalf of his family. Today was a very rough day as the family is beginning to come out of shock and reality is sinking in. MUCH LOVE AND COMPASSION SHOWN AS WAITING CONTINUES Thank you so much for your kind and loving E-mail. Prayers are very much needed and appreciated. Little Spencer opened his eyes today and "held' his mother's hand - his tiny fingers wrapped around Brenda's finger and then he closed his little eyes and looked so exhausted as the effort had tired him out. Prospects are growing very thin as there has been no word from any of the specialists around the country of new procedures or even old procedures to sustain his life. There is only one last genetic specialist left to hear from and if the answer is negative, they will take Spencer off life support - starting with the ventilator. If that happens, he will probably slip quietly away. His dad, Jack, said he is having a really hard time trying to live. I am really looking forward to seeing the pictures of Spencer - I mailed 3 CD's to the hospital today to put the pictures they took on it. When I get them, I will post them so everyone can input what face to use, etc. to reborn Spencer. My prayer is that whatever God has in mind for Spencer will be as painless as possible for him and his family. He is the youngest child of 8 and very much loved. Perhaps he will be a miracle baby and survive - if not, then we must accept that as God's will and remember how such a tiny little one can reach out and touch so many lives for good, reminding us of how precious life, family and friendships are. PRAYING FOR A MIRACLE... Thank you so much for your kind E-mail and your prayers :-) Spencer was born with genetic defects that accompany dwarf characteristics. The nurses say “he is so cute” - the nurses who aren’t even his nurses come over and peek at him because he is so darling. Hid daddy says “he is so handsome”. (as his dad puts it) and you would never guess the extensive internal medical complications that he is suffering from. Each and every complication is correctible with surgery, but his lungs are premature and you can't operate when he is in such a delicate state. We have been praying for a miracle, a new idea, a specialist's genius to suggest a new, more improved way to help Spencer, but the family's hopes are being dashed one by one as the responses from specialists across the country come back negative or with no further information to add. Spencer is still with us, he's a fighter!! His mum is doing better than his dad at this point, she can sing to him and feel like she is doing something to comfort him - he calms at the sound of her voice, but Jack is starting to really understand and feel the sorrow of the situation. He is trying hard to be strong and is a faith-filled man, but it's hard on him, that's for sure. Thanks so much for your kind thoughts, I am very much in need of rest but it's nearly 3 AM and I still have a lot to do. I thank God for the loving hearts and hands that stand ready to help the Lewis’s. Life is good and filled with caring people. MOVING FORWARD... Brenda was released today to the Ronald McDonald house - it is right next door :-) Spencer is stabilized, but his prognosis is still dim. Brenda and Jack never lose faith and many prayers are ascending to heaven, pleading Spencer’s case. He has caught may hearts into his tiny grasp and we love him dearly.
GATHERING DONATIONS TO HELP ... I really appreciate your kindness and willingness to help. The address to send a donation for them is: Since the hospital is hours from the Luis’s home, they are staying at the Ronald McDonald house, I am fielding donations for them and keeping an eye on where the children are. Right now the children are at a friends house in town. I am so grateful for all the help that has been offered. When these situations occur, I have a tendency to go into overdrive as it brings the pain of the loss of my three children crashing back in and I want to stop as much of their suffering as possible. I am so grateful for the wonderful folks who provide the Ronald McDonald houses for families in situations of crisis. My God bless them for their much needed efforts. EARTH ANGELS WALK AMONG US, WE CALL THEM “FRIENDS”. The children have received many gifts of clothing and are so grateful. You should hear them tell their Mom on the phone about the wonderful gifts of love. The parents are so impressed I want to publicly thank all of you who are giving love and help - thank you for helping this sweet tiny baby and his family. I can never put into words how much your kindness to tiny little Spencer and his family means to me. He is a miracle baby, he is still with us against all odds and even scheduled to take breast milk through IV, even though it hasn’t happened yet.. Jack & Brenda asked me to send this to everyone who is helping: “There have been some wonderful people who have served our family in
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