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Spencer’s Story - continued from page 3 BEATING ALL ODDS!! Hey, guess what? Spencer is doing a lot better today and has a specialist that is going over him with a fine tooth comb. When the parents meet with him tomorrow, we will find out if he is strong enough to be airlifted to Columbia for the beginning of surgeries - his is beating all odds!!! High fives. TODAY IS TUESDAY... I am so excited, today is TUESDAY!! Spencer made it to Tuesday for his appointment, now if I can just wait until I can hear from Brenda how the specialist tests went.......Happy dancing going on in the Ozarks right now. I had so much fun going shopping for him yesterday. Call me crazy, but I have decided to pray and hope for the best, I know it's against all odds, but I have wandered around with these rose colored glasses for ever, I am not about to take them off now!
THE NEWS...BITTERSWEET... Brenda and Jack wanted to tell everyone who has been praying and helping their family how much they love and care for you. The big day we were waiting for has come and passed. Spencer is going to be taken to Columbia Hospital to the Intensive Care Nursery for help! He has been diagnosed as one of only 100 cases in world history with this genetic syndrome, they are trying to stabilize him enough to go home to die. It was a difficult day for his parents as the diagnoses was still fatal but now instead of expecting his departure immediately, he has been given 5 months. Christmas this year is going to be tough on this family, but we are preferring to look on the bright side and believe that if prayers can get Spencer this far, more prayers can go even farther. He's a fighter and so much love is focused on him. http://www.grandmothersattic.net/charity/brendacarol.jpg This is a picture of Brenda (left - lots of lovely brown curly hair) and me on the right - Brenda has a beautiful voice and sang at the Newborns in Need convention two years ago. I love Brenda and Jack so much that it is deeply impacting on me what is going on. I am going to concentrate on what I CAN do about the situation instead of dwell on what I can't do. I can pray. I can help the rest of the family get the basic essentials they need like warm clothing and bedding, I can find fun things for Christmas for them - they have so little that anything is wonderful to them, I can encourage others to help where help is needed, I can get a baby quilt for them, I can listen when they call, and I can help coordinate the reborning (making a baby doll that looks just like) Spencer - that is going to be a very positive process for me. I am encouraged by Spencer's diagnosis - it is a big change from "he's not going to make it" to " he has 5 months". FACING REALITY TRYING TO GET BACK TO ‘NORMAL’... The particular genetic disorder that the baby has is rare and there are only 100 documented cases in history. None of the babies that had the dwarf syndrome lived past 5 months. However, modern medicine is advancing all the time and Spencer has already beat the odds. I believe it is because of the many prayers on his behalf, the excellent competent care he is receiving and also his strong spirit - he is a fighter and it's clear he is really trying hard to stay here. Jack is having the hardest time - reality has set in and the expenses are starting to surface. He now has to normalize life as much as possible, get back to supporting the family and take care of all the children, not just one. It's a difficult situation, but Brenda is strong and Jack has so much faith. We are all praying hard for this humble family. STRUGGLING FOR UNDERSTANDING AND BALANCE... The family is in transition now, trying to decide what to do. With the threat of imminent death past them, but the challenge of longer term care and the expense involved in front of them, Jack is handling things well but understandably stressed. I could feel his confusion and pain. He was, and still is grieving badly, as the nightmare for him continues and he loves his son so much. Not knowing from day to day if the baby will still be here when he wakes up is taking it's toll. I have hope and faith that there will be a miracle for Spencer - even more than the miracle taking place now since he is beating all odds - but I could hear Jack's voice shaking on the phone yesterday as he told me, in detail, how the little one is doing. I am hopeful, since the medics have decided to put in a feeding tube and do a tracheotomy so he can breathe. His tongue blocks his windpipe since there is no roof of the mouth to hold it in place. I am praying that he will stabilize enough that they can repair the cleft palate. I hoped they would have done that surgery first, but we walk in baby steps here. The children have gone from, "Isn't this fun staying at people's houses and going on trips to see baby brother", to "I want to go home, and why can't Spencer come home with us?" The smaller ones are just too little to understand. Spencer apparently looks so sweet and "normal" that it's hard to imagine from looking at him all tucked in to a blanket to hide his medical challenges that he isn't okay. I am so grateful to you and your family for helping the Lewis's. Their Christmas season will be a lot brighter because of your love and donations. MUCH NEEDED GIFTS OF LOVE... Dear C. - You are a sweet angel, thanks so much. I had fun digging through the donation tubs down at Newborns in Need today to find some things for Spencer. I know the family will be so pleased with your gifts, they are such a humble family and so grateful for everything they get. . Dear M.- You are such a blessing to me and to everyone around you ;-) I know that Jesus is very important to them and anything religious is a good idea. Brenda is a very accomplished singer and loves music, especially Gospel songs - they both love sweets, which doesn't fit into their budget very well. They have a cow that they milk and I gave them some chickens for eggs. If you wanted to include some Christmas candies, I found some bags at the dollar store last year for only a dollar, they would probably love it. I know that they are all going to be so excited to get anything you send them. Honestly, anything you send will be so gratefully accepted. They home school so art and school supplies are great if you can find them at a flea market or in the Wal Mart clearance isle. Dear V. - Thank you so much, I appreciate your kindness and donation. The postman brings the boxes right to my door - he's been bringing donation boxes here for 11 years now because of Newborns in Need :-) I will let you know the minute it gets here. Brenda dropped off the disk of pictures at my office today and I can barely wait to pick it up and get the web site written so everyone can see little Spencer. My heart goes out to this family, they are very humble and so grateful for any help they have been given. 3 SURGERIES IN THE MORNING - YOUR PRAYERS ARE NEEDED! November 19.2003 - Spencer is 18 days old and is now in his third hospital, Columbia University Hospital and will be going through 3 surgeries tomorrow - tracheotomy, g-tube for feeding and hernia (severe and major). Please pray for him and encourage others to do the same, put him on your prayer lists and prayer chains. He is a fighter but needs our help! ANOTHER MIRACLE! I have been on pins and needles worried about Spencer but knowing that he is in God's hands with prayers offered on his behalf. I am so excited to let everyone know that: HE MADE IT - HE MADE IT - HE MADE IT!!!!! He was in the operating room for 5 hours today. That's a long time for a little guy. Thank you all for your love and prayers. I will give you more information after I have had some sleep. Jack sent a message as well that he wanted me to share with all of you. Keep watching for an update.
SURROUNDED BY LOVE, SPENCER THRIVES... Spencer has certainly has stolen our hearts - what a fine example to all of us. There are some babies who refuse to live and simply fade away in the Neonatal Intensive Care Unit and others who fight like the dickens and win against all odds. Want to know what makes the difference? The parents have a lot to do with it. Brenda and Jack are there from early morning to late in the day, singing to him, holding him and comforting him. Spencer obviously loves his parents and will calm right down as Brenda sings. Many babies get no visitors at all, the parents can't handle the stress and there aren't enough nurses to just sit and cuddle. The little baby has so much love surrounding him and I hope our efforts at reborning Spencer will reflect the combined love of all of us. Even though he has medical challenges, he is perfect in my sight because he represents perfect love. ANXIOUSLY AWAITED NEWS GOES OUT..... THE SPENCER PROJECT Our precious Spencer underwent 3 major surgeries yesterday and came through with flying colors. His severe hernia was repaired, tracheotomy done, and g tube for feeding set in place. The next trial is in 3 days when the doctors want to remove him from the ventilator and see if he can breathe on his own. He must be able to support his own need for oxygen and we are praying that the tracheotomy will do the trick. This is a huge test, please keep Spencer in your prayers. If he can sustain breathing on his own, the next surgeries are going to be extensive to repair the cleft palate and bring his lower jaw forward so he will be able to eat and breathe through his airways properly - he will also receive tubes in his ears. While all this is going on, Spencer will be receiving physical therapy to address the challenge of limbering up the ligaments that are causing his club feet. Our little fighter is meeting each challenge - he is definitely a miracle baby and is astounding everyone. Here is a message that his father wanted me to share with all of you: "Just as the Christ Child affected so many lives at Christmas, Spencer is the one now who is bringing many people from many lands together bringing gifts to the family like the wise men did to Christ. Spencer, as tiny and helpless as he is, is bonding people in love and joining them in a common cause. Jack believes that God is all powerful. and all loving and uses special tools to teach people about love and caring. He believes that Spencer is very special and is helping God do just that. He is so grateful for those who are assisting at this time of trial and challenge and wanted to let you know that your prayers are much needed and most appreciated. - Jack Lewis, Spencer's dad" Jack's E-mail is spencerg@sunbeambabies.com and he would love to hear from all of us. Because of the time spent looking after Spencer at the hospital, he will mostly likely not be able to answer, but will read your messages. Spencer is doing really well, worried us a bit when he needed a transfusion of blood and he is slowly being weaned off the oxygen. The doctors just keep scratching their heads, they don't understand how he is managing to beat all the odds! We are now waiting for a specialist on neonatal skeletal prognosis to tell us whether they think that Spencer's body will outgrow his lung power because of the constricted rib cage area due to his disease. KEEP THOSE PRAYERS COMING! They are working :-) He is in Columbia hospital. Anyone who wants to send emails of encouragement and hope to the family can send them to spencerg@sunbeambabies.com it is a read only email, the family will be able to read your email and I have a forward on my email so I will get a copy as well to help monitor the email. SPENCER GIVES US A FRIGHT.... The info sent to CA today is that he has the fatal form of dwarfism, but we are waiting for a confirmation of the specific diagnosis or an alternate diagnosis to specialists in LA., We are now waiting to hear back. Heroic measures are now being taken to help Spencer to grow and develop as best he can. Every possible thing that can be done for their son is being done at this time, the rest is in the Lords hands. We almost lost Spencer today, his tracheotomy clogged and the medical personnel had to suction him out immediately - there was no warning, the alarms didn’t even go off. It frightened Brenda badly as she realized that this could happen when Spencer is, hopefully, allowed to come home and because there was no warning as the alarms were not triggered, the only reason why they knew something was wrong was that Spencer turned blue. Brenda has had to go from trying to handle her son’s imminent death to the challenge of extensive medical care, should her son ever be allowed to come home. There is so much love there, and I am sure that Brenda and Jack will do whatever is required to assist medical personnel in sustaining Spencer’s life. A big question is the quality of life that Spencer will be able to enjoy. At this time, the doctors surmise that Spencer will not be able to have the surgery to repair his cleft palate for around 6 to 7 months. He is under the excellent medical care and everything that can be done for him is being done. Our little Spencer will continue to surprise and amaze all of us. He is a fighter and is surrounded with so much love and support, it wouldn’t surprise me one bit if he beat all the odds...and I am hoping that he does. |
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