Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Rachel Joy This photo of Ben Vereen and RachleJoy is one of my favorites. The two of them really connected with each other. We were blessed to spend about 10 minutes visiting and praying with this dear man following a presentation of the Christmas story at Walt Disney World. Mr. Vereen was the scripture reader that night. Current Page Page 1 Page 2 Page 3 Page 4 Page 5 Page 6 Page 7 Page 8 UPDATE: 3-21-10 Today is our 3rd day of sunshine, but alas, RachelJoy is sick with an upper respiratory bug and is just hanging out on the couch. She has all the usual symptoms...nothing awful, but she clearly doesn't feel well. We were supposed to go to a friend's 90th birthday party today. I can tell that RachelJoy doesn't feel good because she's not even complaining about staying home. I am exhausted so, I too am content to stay home. I'm sorry we're not enjoying the sunshine because the rain is due back again tomorrow. Please pray for RachelJoy to come through this without complications. We have quite a bit of fun planned for this coming week. I also don't want to miss a 2nd week of church. Trusting, Stephanie UPDATE: 3-14-10 I just received a phone call from RachelJoy's pulmonologist. He is very concerned based on the past 90 days of Cpap data. RachelJoy continues to have 9-16 episodes of apnea EVERY HOUR that she sleeps, or tries to sleep. He also confirmed that she has a minimum of 2 arrests every night. He is very concerned and wants her back in the sleep lab asap. He is unwilling to make any more changes without having her in the hospital setting. I was once again confronted with the reality of the miracle that is RachelJoy. The doctor expressed his amazement that she is so stable during the day, and his befuddlement that she survives throught the night. He gives me the credit, but I quickly let him know that this is God's grace. Yes, I've heard this kind of grim report accompanied by amazement at RachelJoy's resilience before, but it never fails to cause me to fall on my knees and praise God for His faithfulness. Tears flow, scripture is read, and now I'm here asking for your prayer support again. Don't ever think that your one prayer isn't important. Not only does it please our Heavenly Father, but it somehow spiritually nourishes RachelJoy as we remain in this drama day after day and night after night. So yes, I will hug her a little tighter and a little longer today. I'll pray over her as she sleeps; I'll place my hand on her head and bless her as she wakes this morning. I will be much more deliberate in calling Jesus to her attention today, and I'll praise Him frequently for the gift of her life. I'll plead again for Him to continue preserving her life, knowing that His grace is sufficient and His mercies are new every morning, and in RachelJoy's case, many times every night. Trusting Him who authors the situation, to also provide the solution, Stephanie UPDATE: 2-19-10 RachelJoy and I continue to enjoy the Calif. sunshine. It's a welcome change from the grey rain in Oregon. Today and tomorrow we are visiting with my father, then it's on to Redding to visit with friends there. I wanted to post this message for Valentine's Day, but we were without computer access. It is directed to the women who read our journal. I've never heard a man tell another man, "Oh I just love what you've done with your garage." Or, "I just love your new comb over. It really covered the bald spot!" However, almost every day I hear a woman remark, "Oh, I just love your ...... (put in any one of a bazillion things we just love!) I would like to begin a campaign for lent. Let's give up just loving things and reserve our love for relationships. I would like to challenge you to become very deliberate with your expressions of love. I often wonder what our children think when we just love things all day long, and then tell them how much we love them. In the Bible, the word love actually had 3 different words to convey love of God, love between a man and a woman, and a third word of love for all other relationships: agape, eros and phileos. There was no word for a love of things. I want RachelJoy to understand that love is a very holy privilege. No other creatures on earth have the capacity that we do to love one another. I want her to feel cherished and special and unique in the way I care about her. I also want her to know that I don't have a strong emotional tie to things. I can enjoy, appreciate, and be grateful to God for the things in my life, but I don't want to waste my love on them. And don't even get me started on stuffed creatures and toys, and TV characters she's never even met that express their love for RachelJoy!! Let's hone in our God given gift of love and express it only in those relationships that merit a heart felt commitment. Still learning about love, Stephanie UPDATE: 2-10-10 "I'm bursting with with God-news, I'm dancing with the song of my Savior God." This is how The Message interprets Luke's rendition of Mary's joy as she began what is called the Magnificat; Her words of praise after learning that she would bear God's son. The "God-news is not a misspelling!" Read last night's entry if you missed it. It will explain this quote and this note of follow up: RachelJoy slept well last night and awoke this morning, ready to go. No fever, no runny nose, satting at 98, no seizures...none of the scenarios that Dr. Spiller spoke of, came to be. I know that this is because hundreds of you prayed. Our loving Father heard you and honored your hearts. Thank you for being people we can depend on. If this was an autonomic disfunction, we will see it again in the next day or so again. Today, we are off to Bible Study and then we will run the errands we had planned for yesterday. We are still on target for a Thursday beginning to our driving trip to California to visit my father. UPDATE: 1-30-10 Our regular readers will understand when I say that over the past 18 months, RachelJoy continually demonstrated this verse. One year ago, she was at her weakest with every doctor and therapist agreeing that her life would soon end. She could only lay on the sofa and often fight for breath. Cardio pulmonary arrests were frequent occurances, and we got to know our 911 and ER staff fairly well. She still has severe apnea and several respiratory arrests at night, but her days are quite carefree. (The respiratory arrests will become cardio/pulmonary arrests if my resuscitation attempts aren't successful.) One year to the week later, RachelJoy walks everywhere...no wheelchair and no oxygen, sometimes bounding along if attracted to something up ahead. We have added bike riding to our list of activities, and RachelJoy is also able to help around the house a bit now. PRAISE TO JESUS! ALL PRAISE TO HIM! JESUS IS VICTOR! Some of you enjoy RachelJoy's little stories, so I'll share another one. We have new friends in TX who enjoy nursing sick puppies back to health so they can be adopted. RachelJoy was invited to name a couple of their last litter of pups. She did so, and became involved in praying for their recovery. Mission accomplished. In fact the weakest one became one of the strongest! Sooooooooo, this weekend we went to Petco and they had puppies up for adoption who looked exactly like our friends' dogs. RachelJoy would have spent the entire afternoon with them, and when we finally got home, I sugggested we write and tell them about our adventure. She dictated: "Puppies....more puppies. Wiggle, wiggle. Pee! Wiggle, wiggle! Pee! Lick. Happy puppy. Happy me. Mom says no! (big surprise there!) Tell Friends...." I'm guessing you can all figure out what mom said no to! If the rain holds off, we will ride bikes after lunch. Usually on Wednesdays, we go to an organization called Love Inc (Love in the name of Christ) and volunteer there. This has become RachelJoy's way of giving back to Jesus. Last week, they had an entire wastebasket of paper for her to shred. She was delighted and giggled with each piece as the shredder grinded and ate the paper. Soon everyone in the office was coming to see what was so funny. Everyone ended up laughing along with her. And they thought office work was dull and mundane! She blesses them often with her demonstration of joy in everyday jobs. Today, we are home because they are in all day meetings. So, that's all the news from our house. May you be blessed in the dailyness of what you've been called to do. Giggle when it becomes boring and dance to announce that you just aren't going to work anymore! Learning to let His strength show through, Stephanie UPDATE: 1-24-10 I don't have time for a long entry because RachelJoy and I are headed out in the sunshine to ride our new bikes!! Yes my friends...to celebrate the anniversary of RachelJoy's referral to hospice (from which we resigned later last spring), we bought bikes. It won't surprise you that RachelJoy's is pink. (Mine is blue - no choice) We bought them at a bike shop so they were fitted and adjusted to our exact needs. She has good strong training wheels on hers. Mine is the big 3 wheel type. It didn't take long for me to realize that I can no longer balance or steer a standard 2 wheeler. Of course our helmets are pink!! Did you think the princess would allow anything else??!! While in the store, RachelJoy was eager to try hers out. She hopped on and rode slowly but skillfully. Then she stopped to be sure that Carol and I were watching, and slowly drove directly into a concrete pillar that supports the building. "Umm, uh oh," she said with a big grin on her face. Today I will try her out in the real world and see how she does. We went to Target to get our helmets. She spied a pink baseball batting helmet and claimed it for her own. It definietely provides better protection than a bike helmet does. We will be quite the spectacle with my 3 wheeler and her helmet....but look out new neighborhood, here we come!! Rejoicing in His strength in us, Stephanie and RachelJoy UPDATE: 1-17-10 A defender is one who, legally, is depended on to study all the facts, sort out the mistruths, investigate any unanswered questions, and then come to the table in a court of law and protect the client from the damaging statements and incriminating evidence that the opposing litagent may present. I am grateful today that Jesus Christ is our Defender. RachelJoy and I would never be able to stand on our own before satan. Even with the full armor of God, we still need Him. I have been dealing with a medical community that finds it impossible to believe that RachelJoy and I are as stable as we are. Three physicians have now chosen to mock the numbers they are seeing on their equipment in their offices, and one is almost accusatory in his response. The pulmonologist stated that the numbers "belie the evidence" that he hears when he listens to RachelJoy with his stethoscope. Our Healing Savior has stepped in to be our defender. My responsibility is to keep my cool (have you ever felt like you're burning calories bec. you're trying so hard to remain silent??!) and encourage him that I don't understand it either, but I know my God, and this fits His character and purpose. The pulmonologist has declined to be involved in any discussion. My responsibility is to be fervent and faithful in praying for him. This is not about RachelJoy's respiratory status. This is about spiritual warfare. It's about God putting us on the medical mission field because He cares deeply about the pulmonologist and his spiritual wellbeing. We are grateful for the presence of our Defender. Carol is coming back to work with RachelJoy on Tues of next week! She is one fast healer. She has already been released from medical care by her surgeon. Yaa!! We have no big plans for the weekend. The weather remains grey and cold so we'll spend it inside. I think I'll try setting up the WII tomorrow and see how that goes. RachelJoy has decided that it's time for me to close this off and fix lunch. May your weekend be blessed and your worship be glorious. Remaining undefeated because of my Defender, Stephanie UPDATE: 1-12-10 Life is moving along here at our house. RachelJoy continues to build physical strength and even danced a bit before and after worship yesterday. I am still finding my limits, but am finding them the hard way - by over doing. I haven't journaled much lately because I'm in a bit of a dry spell, not unhappy or depressed...just dry. November and December were so stuffed full of blessings, health and house, Thanksgiving and Advent and Christmas. I had no problem finding over the top reasons to praise Him. Now in the 3rd grey week in a row here in Oregon, I'm confronted with, for lack of a better word, the dailyness of my life. I am trying to find new routines and keep up with RachelJoy. There's nothing big, major, exciting these days. I don't want my praise stuck in last months joy. I want new blessings each day. They really aren't that hard to find. I need to go back to praising for simple joys, dishes to wash, a beautiful RachelJoy to encourage and nurture, a solid and lovelyl new bed to sleep in at the close of each day. Oh yeah, I could be thankful that RachelJoy and I are off our oxygen and alive to seize this day for Him. O.K., it's coming back to me now! I feel a need to worship coming on. I'm going to put on some good Gospel music ( a la Gaither Homecoming), and let my feet and hands lead me into celebration. Look out RachelJoy...here comes a renewed mom! Thirsting daily, Stephanie UPDATE: 1-10-10 While our physical home continues to be a wonderful and safe haven for RachelJoy and me, being at home in Him is even better. I'm so grateful that the Lord turned our hearts to Him before providing us with worldly security. We learned so much about loving Him, serving Him and growing in Him from our years of uncertainty, and now we have the privilege of loving, serving and growing in a comfort that not many Christians have. The biggest joy for me, (and there are many) is that we can begin to tithe again. I get teary just sitting here thinking about it. Amazing grace indeed. We saw Dr. Spiller today and her comments were far from inspiring. She concluded that even though we both look "so much better", neither of us has made much progress. RachelJoy "remains an enigma". Her lungs "sound better", but her overall condition remains "unchanged." I quieted her before she could go on to her usual statement about RachelJoy dying. I reminded her that RachelJoy was off oxygen and had walked from the car to her office, and wasn't winded at all. She explained it all away. World, hear me!! I am declaring a measure of healing given by our Savior to my daughter RachelJoy. If it goes away tomorrow I'll deal with it, but I must praise our Lord for His intervention on RachelJoy's behalf. Dr. Spiller agreed that RachelJoy is no longer a candidate for hospice - so on some level, it seems to me, she has improved. My own cardiac situation is complex at best, and the time has come to seek a consult. I'm going to be writing to the cardiologist who saw RachelJoy in Phoenix last year with the prayer that he'll be willing to see me when we travel down to visit the Sisters next month. It does not appear that surgical intervention is needed, so that makes it a little simpler, at least for the moment. I still don't have the meds. working to my advantage. Dr. Spiller is understandably not eager to try a 5th med without studies (ekg, echo etc) being done. I know that God will reveal His plan, so that's the main consult I'm signing up for right now. RachelJoy is struggling with not having Carol here. She continues her recovery at home and we try to see her a couple of times each week. RachelJoy is reluctant to go to Carol, so I know she's not comfortable with Carol suddenly being chair bound in spite of my best explanations. She is past the anger part of her adjustment, so that's made things easier on my end. Our prayers are with all of you enveloped in bitter cold, be it the weather or the condition of your heart towards Him. Know than in both situations, spring will come. Home in our new house and home in His heart, Stephanie ADDED: 1-18-04 RachelJoy is 15 and my only survivor of 5 adopted medically fragile babies. Born the first day of the 24th week, she weighed 1 lb. 6oz! (a quarter covered her hand or foot print) I met her when she was 3 weeks old. She is considered medically fragile. It doesn't occur to RachelJoy that she should be miserable. She greets each and every day as a gift from the Lord. Her smile and laughter and hugs can make even a grey, rainy, Oregon day seem warm. Condition: Down Syndrome, Cerebral Palsy, seizures that can lead to cardio pulmonary arrest, congestive heart failure (uses oxygen 24/7), traumatic brain injury (2 comas, one @5yrs. of age, one at 8yrs), uses NG tube to supplement oral feedings, uses CPAP to prevent sleep apnea Current Update: Greetings in the sustaining name of Jesus. He continues to sustain RachelJoy and I on a daily basis. I've had strep. She's dealing with an increase in her seizure meds, (the seizures themselves have stopped once again), the reinsertion of her NG tube, and more time on CPAP. I'm moving the appeal for money to help with the plumbing repairs onto the history page. We are about one third of the way there. If you know anyone who might want to help, please pass the word along. Thank you. Thank you. RachelJoy has been quite bored here at home. This started to surface last summer. I'm looking at having her go to school for a few hours each day, just to be with other kids. She is such a social critter. Please pray for wisdom in all the decisions that need to be made. Are you ready for another Walt Disney World story? Oh good! The photo of RachelJoy with the Blue Fairy is one of my favs. We met this particular gal on our previous trip, when she was with Cinderella in one of the character greeting areas. She and RachelJoy became fast friends. On our trip this year, we couldn't find her anywhere, but...one night after a trying day physically for RJ, the cast members at our resort sent us to their restaurant to see Cinderella. As we approached, who should appear, but our very own Blue Fairy! She was only there that one night as a last minute substitute for another lady. We hadn't been able to find her because she was in all the parades instead of the character greeting venues. RachelJoy recognized her right away too. It was so fun to stand back and watch them together. During her break, she took RJ out onto a patio. I wasn't invited, but the BF's character escort did go and take pictures. This was the Lord working on RachelJoy's behalf, with a little pixie dust thrown in for good measure! When we finally did see the parades she was in, she spotted RJ both times and personally greeted her. May the God of all grace and glory provide some serendipity for your life too. His, by his grace, Stephanie If you would like to add a page for your child, click on "Add A Child" below. Please be aware that once a child's page is added to this website the information becomes public. Please keep this in mind when posting information. It is recommended that you DO NOT post your full names or addresses unless using a post office box. We can not be responsible for who views these pages as they are open to the general public. We suggest a password protected page for optimum privacy. Need information? 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