Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Sarah Rose Current Page Page 1 Page 2 Page 3 Page 4 UPDATE: 4-5-09 Hello, Quick update: Life is So busy... sorry about not updating for prayer requests. Our son, Josh is home from China - what a blessing to have him helping with his brothers and sisters! The insurance side of things is sad... They want to cut nursing coverage for Sarah, physical therapy, and occupational therapy - they say it isn't necessary (because she is doing so much better since she is home). She is still trached/vented - so she does require 24 hour nursing care, and she does need physical therapy and occupational therapy - we are not doctors, or nurses... We continue to have to appeal the insurance company, as they are taught to not help these children. Sarah seems to be recovering from the germs that were in her lungs. She is off the Tobi nebs. We continue to claim healing for her body, even though we cannot ''see'' it at times, we trust the Lord that he continues to work in her life. It seems that she is off the Tobi nebs and then is on again, off again, on again. We are told that since she is trached it is difficult to get rid of the germs permanently as they have easy access into her system. Trying to NOT accept that report! Shanae has still NOT gained any weight - now it has been 2 1/2 years. We still don't know what is wrong... It started after our car accident with clearing her throat, and difficulty swallowing and continues now with tummy problems. Please pray for her. The rest of the children continue to have neck, and back complaints, yet we work through it as a family, helping each other. Our finances could use a lot of prayers - we continue to seek the Lord for his guidance in the choices that we are making. We are so busy trying to support our family, that the days have a way of passing by too fast without a closeness, or bonding between us. Much prayer is appreciated! My health - hasn't changed much - still hanging in there - trying different herbs and hoping to afford to start physical therapy for my neck/back/left arm weakness... Thank you ALL for your continued prayers! God Bless, Diane UPDATE: 2-11-09 Hello, Sarah is doing better - she is back eating again and off of the IV fluids for hydration. We don't know what caused the bleeding - I am thinking it is the IV antibiotics wrecking her system. Some of it can make your blood thinner and it can cause stomach ulcers, etc., so any kind of irritation can cause bleeding easily. I don't know if we will ever know though, we only pray that it doesn't happen again! Keep the prayers coming - I attribute her fast healing as always and give ALL glory to the LORD! God Bless, Diane UPDATE: 2-8-09 Hello, Please pray for Sarah - we have bleeding in her stomach (she also vomited blood), and in with her stools - not sure what is going on... pray for her hemoglobin to improve and the bleeding to stop, for good doctors to diagnose, and for whatever is causing this to be gone - thanks! Diane UPDATE: 1-15-09 Hello All, I am finally back home with Sarah today after spending the past 10 days in the intensive care unit at Children's Hospital! She will continue on IV antibiotics for 6 weeks to hopefully get rid of the infection that was in the pacemaker pocket area, after the pacemaker surgery. She seems happy to be back in her room in her cozy bed. Her sisters and brothers were so happy to have her back home - she got lots of hugs and kisses when she arrived! God is always available to hear our prayers, just ask Him to reveal Himself to you today. Through the hard times, He is the one that comforts us, and continues to show His love, especially through all of you! Thank you for all of your prayers! God Bless, Diane UPDATE: 1-11-09 Hello All, Sarah is improving! Praise God! We are hoping to get her home in a few days on IV antibiotics. We are still hoping/praying that we won't need to have any surgeries to remove the pacemaker and place a new one in. I am told that usually 100% of the time they have to remove the old one with the germs that attach to it, and then wait for the antibiotics to get rid of the rest of the germs in the area where the pacemaker was implanted, and then have another surgery to place a new pacemaker in. I know that the Lord is better then 100% and we continue to pray that these surgeries WON'T be necessary! Keep the prayers coming - thank you again for ALL prayer warriors! We are always in a battle - keep your armor on! God bless, Diane UPDATE: 1-7-09 Quick update, as I have to get back to Sarah's room. Sarah was transported by ambulance to Children's Hospital. Sarah had to go to the Pediatric Intensive Care Unit last Friday, 1/2/09. Sarah spiked a high fever and her pacemaker site was hugely swollen. Her abdominal girth went up 12cm with the tissues swelling around the pacemaker and her waistline. She was screaming in pain to the point that we had to place her on the ventilator and give her a rate of 30bpm with 3 liters of O2, just to calm her down to keep her sats above 90. She was so hyper-sensitive, I had never seen her that way before. She was needing morphine every 2 hours and even that was not often enough - sometimes after 1 1/2 hours we would be back tot he screaming. Her hemoglobin went down 4 points, but has since stabalized (we hope). Her CRP is finally coming down from 15 to almost 4 today - praise God! We are starting her feedings back and she seems to be tolerating them so far. She has a serious infection from the pacemaker surgery that we had performed 2 weeks ago, and is on the 2 heaviest antibiotics available. She also has staph, strep, and flavobacterium in her lungs now. On 1/6 we had a Picc line placed, which will also Sarah to be able to be treated for at least 6 weeks of IV antibiotics at home, and then hopefully switch over to oral ones for a year. We are going to try IV home antibiotics first. If this doesn't work, we will have to have surgery to remove the new pacemaker generator that was placed back in Dec., THEN treat for the infection with an external pacemaker hooked up, which would require a long hospital stay. After the infection would clear, THEN we would have another surgery to place a new pacemaker generator. We are praying that this will not be the case, even if the cardiologist says that usually 100% of the time they have to remove the ''source'' of the infection. Rik is out in California this week getting re-certified to teach Pro Tools at the college, so is not at home with our other 4 young children. We have our oldest son, Jesse, and his girlfriend staying with our younger children (blessing). Place for a safe time there! Praying for peace for Rik as well since he can't be with us right now, and needs to learn and pass his testing. I am praying for a safe and peaceful transition home as I can't imagine what I have to walk into soon (cleaning, washing clothes, bill paying, catching the children up on school, etc.). As most of you realize - life can get so crazy and sometimes it is ONLY his peace that gets you through the day. Please join us, or if you are already praying, that the infection will clear and that we will not need any surgeries. We are hoping to get Sarah back home soon! Blessings to all! Diane UPDATE: 12-18-08 Hello Everyone, I just got home today to no heat in the old part of the house (Sarah's room is in this part) as something is wrong with the furnace(it should be under warranty), AND UNRELATED we have no water or electrical in the new part of the house (the septic line broke and saturated our breaker box panel...) I placed a space heater in Sarah's room to warm my nurses toes and keep Sarah warm through the night - the furnace guy will be out in the morning... The excavating guy will also be out tomorrow to hopefully be able to fix the drain line so that we can have the electrical fixed after that! Well - when it rains it POURS to make us POORer! At least we are RICH in CHRIST, - we sure need His help right now - pray for a league of angels to protect our family/house/property - so tired of the tribulations... I will praise the LORD for a bed to sleep in tonight and that SARAH IS HOME! Her pacemaker surgery went well! She did catch some type of germs in her nose/ear/lungs, but it is much better to have her home to recover - as our nurses are the BEST! We are praying for a complete recovery and that we can get back to trying to strengthen her body and improve her quality of life. Other matter: One of my nurses told me about a Handicap-van that is available (4 years old) - we would need to raise $16,000. to purchase it for Sarah. It would work PERFECTLY FOR HER and for our family (we could all fit into it at the same time). Please be praying for the funds to be made available - I believe if it is His will - all in God's timing! I am off to bed as I haven't sleep literally in 3 days! God Bless, Diane UPDATE: 12-9-08 Hello Everyone, It has been a long time since I last updated - I am sorry for that. Time has a way of slipping by too fast, and I am so busy trying to "tread water", so-to-speak. With everything going on in life, I have been feeling like "Job" lately. I have drawn strength in knowing that the Lord will never leave me, although life gets pretty tough at times, as you all know. The joy of the Lord continues to be my strength, since I definitely have none of my own. We have been struggling with insurance coverage for Sarah - between BCBS and MA. BCBS doesn't want to pay for Sarah's nursing care (except for 4 hours a week by the end of the year) as they feel it is unnecessary. They feel that trained parents can provide care for her 24/7 (I wonder when they think I should sleep, raise my 4 other children at home, homeschool them, cook, clean, pay bills, take care of Stirling Sound business and Stirling Collies?) and that 4 hours is adequate per week (we have been getting 24 hours of care up until now). 4 hours a week is certainly not enough of a break to cover everything else I have to do as a mom/wife/teacher/etc. BCBS figures that MA will pick up the rest, but we have to qualify each year for that too. I don't know why MA should have to pay for the bulk of her care, as we pay a large premium each month for our BCBS coverage and they should be responsible to provide coverage for us! Please pray for this to be resolved and quickly! Sarah is going to be 3 years old on 12/12/08 - Praise the LORD! We are SO blessed to have each and every day with her! Her smiles fill my heart with gladness, and the "clickie" noises that she makes with her mouth are such a joy to hear! Her last culture showed pseudomonas, but NO strep or staph, which is GREAT news! We have been treating for the past 10 days at a cost of "get ready" - $8,579.20 for 10 days worth of the nebulizer drug - I wish I owned this drug company! It looks like 100% water. No wonder families can't afford health care anymore. Even worse, it has no preservatives in it, SO we have to throw 1/2 of it away with each dose, as she only gets 1/2 the container each time for her size. After throwing over $4,000.00 away down the drain, I could cry! In my mind I think, "Wow, I could have paid a lot of bills with that!" I was told later that the company does make a multiple use vial, but that one hadn't been ordered by our physician... Sarah is scheduled for her pacemaker battery replacement on 12/16/08 at 7:30am. She enters the hospital on the 15th, for prescreening stuff. We are hoping to get her home quickly afterwards - pray for a safe surgery, minimal pain medication and a quick turnaround to go back home. We finally received her own wooden stander and we have been working with her in that. It is supposed to help her overall, "digestion, circulation, muscle tone in her legs" and she loves being in it! We are starting out slow, about 1/2 hour a few times a day and will increase as tolerated. She is loving her new wheelchair though - it is so much better, as it is made just for her! Praise the Lord again for these wonderful pieces of equipment to help her develop! Shanae and I went to a new doctor this past week. Shanae had to have 7 vials of blood drawn and urine testing. I also had blood work done. It will take 6-8 weeks for results to come back. We are scheduled to go back to review everything the middle of February (he is a VERY busy doctor). We continue to pray for answers to help her body and mine to heal, not just cover up symptoms. I did find out that I am low in Iodine, so they have me painting myself daily until the paint stays for over 24 hours. I also discovered that the 5 tumors in my liver, might be related to my thyroid stuff going on. We are praying through ALL of this - Our God is bigger then anything that comes our way, and we continue to place our trust in Him! May the LORD richly bless each and every one of your families throughout this Holiday season! Do good to others - it makes the heart glad! Store up for yourselves treasures in heaven, where rust, moth, or robbers can't break in and destroy them! God Bless, Diane UPDATE: 11-11-08 Hello All, I believe that Sarah has finally recovered from the "germs". We continue to try to wean her off of the ventilator, in hopes of closing the tracheal hole and have her breathe through her mouth and nose someday. She seems to be doing well on the "nose" these days and only needs the vent for moisture. We are hoping to be able to save up for a humidification system for our furnace, for use during the winter months, so that she has enough moisture without the ventilator. I believe it costs about $500. to add to the furnace connected to her room. This would give her the opportunity to just use the nose, instead of the ventilator for moisture. We do have a humidity collar for her, but she seems to get yeast infections around her neck every time we use it, so we go back to the ventilator again for moisture. She is scheduled to be fitted for her wheel chair on 11/12/08, and her wooden stander they said is in - they just have to put it together and bring it out! Praise the LORD! We have had a blue foam stander on loan from the school, but it doesn't fit her well, and she doesn't do well in it. The wheel chair was a loaner too, and although it had flat tires, it was better then nothing. It served it's purpose for many children. We continue to try and help Sarah with muscle strengthening, and try to figure out ways to help minimize the curvature that is going on with her spine (due to low muscle tone). We are hoping to obtain new xrays of her spine when she is in for the wheelchair fitting, and see if they will fit her for a back brace or something to help support her. She does need to have her pacemaker replaced, and the doctor is hoping to do that surgery within the next month, or two. We are praying for the "best" time, with germ season coming and Rik's schedule with work. Shanae's update - they scoped her last Friday, took biopsy's, and some more blood work. Her GI doctor said we should hear something after he gets back on the 17th. She has a few things that don't seem right, but we don't know much yet. No parasites/worms though - that's great! I will update when I know more. Please pray for her appetite to increase, proper weight gain, and test results to ALL be normal! Mommy update - thyroid tumor still there, although it hasn't grown in a year - which I am praising God for! My TSH level is normal, which I think is good. I'm not ready to have any surgery at this point. Shanae and I will be switching home doctors in December to check out the natural remedy doctor idea to see what he thinks for both of us. I took the family to a new Chiro - all of the children are still complaining of their necks, and backs, although different areas, after the car accident that we were in almost 2 years ago. I can't believe it has been that long and they are still hurting! I thought younger children are supposed to bounce back, not continue to hurt like their mom. Pray for much relief - especially Nathan - his neck/back are tense, and sore and it is hard for him to sleep as well at times. I am enclosing a recent photo of my 3 girls - so sweet! Thank you for the continued prayers for our family! We pray for your holidays to be joyful and filled with the Lord's love for each other! God Bless, Diane UPDATE: 10-27-08 Hello All, Sarah seems to be on the mend with the bugs she has been suffering with for the past 3 months - praises are due! She is still on the nose for most of her day (23-24 hours sometimes), doing well on room air. Sarah needs to have her pacemaker surgery within the next 1-3 months, so please be praying for a quick, easy, safe surgery, quick recovery, safety while at the hospital, and that she will come home quickly! We are thinking that sooner would be better then later, with the germ season coming up (RSV, etc.). We are going to try and wait until we know more about what is going on with our other daughter, Shanae, before scheduling Sarah's surgery, so we are thinking that the end of Nov. would be better. I'll update you on the surgery dates, so Sarah can have the prayer covering that she needs! Thank you for your continued prayers. God Bless, Diane UPDATE: 10-9-08 Hello All, Sarah has been struggling with getting rid of 3 bad bugs (pseudo..., staph, strep) within her lungs. She has been doing great through it - still on the nose, (only the vent usually during medication time, or moisture needs), and usually on room air! This is SO great, compared to a year ago - God is so good! We are winding down with the antibiotics now, so we are praying that the next cultures will show that everything is finally cleared. She has been struggling with this since the end of July. I am enclosing a photo of the stander we are hoping to obtain for her, if insurance will be willing to pay for it. They said it will take about 2 months to decide (I don't understand "what" takes so long). Please be praying that they will allow her to have it in our home for daily use, and that it will be covered by insurance. She seems to enjoy it alot, and it helps with developing muscle tone, digestion, elimination, breathing, and cognitive skills seem to improve. Life can be overwhelming at times, and it seems like we are on another journey again. Please join us in prayer for our 7 year old daughter, Shanae. She has an appointment scheduled the end of Oct. with Oncology/Hematology Dept. at the Hospital. She has not gained weight in 2 years, and doesn't care to eat much of anything. Her blood work is off, and I'm not sure what it means at this point. They will be explaining things at her appointment. I hear the word "Oncology" within the Hematology dept., and I know what that can mean, and fears start to creep in the door. I know that "fear" is not from the Lord, and so I choose to rebuke the thoughts that start to swarm in my head. We will continue to trust the Lord and claim healing for Shanae in Jesus mighty name!!! Children are such a precious gift from the Lord! We don't know what is next - pray for healing within her body, for her appetite to increase and for necessary weight gain and growth! Thank you all for your continued prayers for our family! I will update when I know more! God Bless, Diane UPDATE: 9-10-08 Hello All, Well... Sarah had an ENT appointment today 9/9/08. They don't really know why Sarah is spitting up, and throwing up either. The inside of her nose, throat, and vocal box is very red and inflamed. They want to put her out and go down her esophagus and look, to look down her trachea, and look in her ears - her right ear has fluid buildup in it. He couldn't see the tubes, so he would need to dilate her ear canals to see if they are still in place, or if they need to be replacement. I was thinking... if they have to place her under anesthesia anyway, maybe we should fix the hernia that is in her abdominal wall (caused from her last surgery)? I am going to try and have a culture done again to make sure that she doesn't have strep again, or staph, etc., causing the irritation, besides the stomach fluids irritating it. We are also trying a new stomach ease tea, mixed in with her food, hoping to help calm her stomach. We are going to be marking what vegetables she has been getting to see if any of these are causing the upset stomach. It seems that if her bowels are full, and her bladder is full, and her stomach is full - this is when we have the problem... Much prayer is needed in all of this - I need His peace for these decisions, as 2 of the last T18 children died in the last 6 months after their "hospital" stay, and they were both healthier, or seemed that way beforehand. Please join us in prayer for wisdom, His peace that passes all understanding, in all the decisions that are ahead. Pray for healing for Sarah's nose/throat and that she will stop throwing up her food, etc. If anyone has any suggestions on how to calm the irritation, or help her body to heal, please let me know - thanks! God Bless, Diane UPDATE: 7-30-08 Hello All, Sarah had been doing so well with the weaning process. She is usually on room air for 99% of the time, and is on the "nose" 16 hours a day. We place her back on the vent for 8 hours while sleeping and will lessen the duration during that time until she is 24/7 on the "nose", or humidity collar. While Sarah is on the vent, she breathes her own breaths, as it is only used as a C-pap machine, not an actual ventilator. We are mainly looking for the moisture that it provides. Well... here we go again... Sarah threw up and ended up with food in her lungs. They believe she has aspiration pneumonia. We are now back on Tobi-nebs to try and clear her lungs out. She has been going through gagging for the past few weeks, and then throws up afterwards. Sarah had xrays, blood work, and cultures taken at home, done on Friday. We are waiting for tests to come back. Please pray that her stomach issues, lung issues and heart will heal! We have a few check ups scheduled in August, to try and decide if Sarah will have the abdominal hernia repaired at this time. We had an xray done back in July (for the curvature of her spine), and my nurses and I thought we saw bowels up in her heart/lung area. If this is the case, her diaphragm patch might have given way, or torn, causing them to move upward. We are waiting for a doctor to re-read the xrays to see if that is the case. If so, we will have both repaired at the same time. Thank you for your continued prayers for Sarah! God Bless, Diane UPDATE: 7-7-08 Hello All, Quick update - Sarah continues to wean from the vent! Praise the LORD! We are having a meeting to discuss this with all the caregivers involved, so that everyone is on the same page as to methods, problems to watch for, etc. Please pray for a smooth transition with this - thanks! Sarah will be making a a trip to Children's Gillette Hospital in St. Paul to see what kind of help they have to offer her next week - pray for a safe trip! Areas of prayer that are needed: lungs, heart, digestive and elimination (to function well), muscle strength and control, brain development. We continue to pray for a complete healing for Sarah, and that the extra 18th chromosome will be null and void within her body! God is capable of answering this prayer with a yes, and AMEN! Happy 4th to everyone - we are truly free and forgiven with the LORD! Special thank you for everyone that helped for us to find Nubian Goat's milk for Sarah. She seems to be doing well with the milk! All prayers are deeply appreciated and wanted! Please continue to pray for our finances as well - as you know times are extremely tough and we ALL need His blessing on the choices that we make! Much love, Diane UPDATE: 6-16-08 Hello Everyone, Sarah is doing well - we have her on room air for most of the time these-days. We continually are able to wean her off of the ventilator! A week ago I started to take her outside for the first time! I walked her around our home, she looked around with a surprised look on her face as if realizing that she wasn't in her room anymore. We sat outside on our deck for a couple of hours - it was great! She is not used to the sun light, so she would close her eyes a lot, and I would try to shade them for her. Angela let me borrow her sunglasses (I don't know what she thought of them), and we found an old baby hat and put them on her to help. The hat doesn't fit, but it worked to pull it towards the front of her face to shield the sun. Each day now she seems to be adjusting more. When she is awake for the most part, she is a very happy, smiley baby (even if she is 2 1/2 years old - she looks like a 6 month old). The only times we see her cry, or complain is when she needs to poop, pee, or spits up digested food into her mouth. She doesn't like the taste by the look on her face, and then throws up, or gags more. We continue to pray for healing within her lungs, and that her heart will be completely healed so that she won't need her pacemaker anymore. We are praying that she will gain muscle strength and control, and that her brain will begin to process more and more information. It is amazing to be able to carry her around without all of the tubes being attached. The first time I took her into the other room where her sisters and brothers were playing, they were shocked! They couldn't believe that Sarah was out of her room without anything. Angela even commented that Sarah actually looked like a regular baby without all of the tubes attached. We have been having so much fun being able to bring her into other rooms and outside (when weather permits - that is another story - we are still waiting for summer). Blessings to you! Keep the prayers coming - I know that God is faithful and hears our prayers - Yes and Amen! God Bless, Diane UPDATE: 5-16-08 Hello All, Thoughts I so agree with and personalized for my life: "It is God that girdeth me with strength, and maketh my way perfect." (Psalms 18:32). Do you ever wake up and feel like you have nothing left to give? During one quiet morning as I looked out the kitchen window, I felt exhausted physically, financially, and emotionally. I just wanted my house to be clean; but as I looked around the house, each task that I had accomplished seemed to have been replaced by ten others -laundry, dishes, and dirt seemed to be everywhere. Added to this overwhelming burden was a mountain of schoolwork waiting to be prepared and lessons needing to be taught as our children are home-schooled. I felt depleted to the point of despair and prayed, "Lord, I'm so tired. Will I ever finish all this work?" The struggle to find strength for the battle is nothing new. Clearly, believing the old saying, "When life gets tough, the tough get going," isn't the answer. As a Christian, I already know that I don't have the ability to conjure up strength on my own. The strength lies in my attitude toward God and acknowledging my dependency on Him. Like Paul, I must learn "for when I am weak, then am I strong" (2 Corinthians 12:10b). Like a little child strengthened by his parents to lift objects much too heavy for himself, I can rediscover God's strength to move mountains of housework, schoolwork, or whatever comes my way. If you are experiencing burnout and finding yourself shutting down, God is waiting for you. Your all-powerful, loving, heavenly Father has the strength you need to face today, tomorrow, and even eternity. It is all about depending on God, and then to find out what you can do "through Him" while it is still today. "I can do all things through Christ which strengtheneth me." (Philippians 4:13) It has been a busy week. My mother-in-law's heart stopped beating last Thursday - doctors don't know why... They paddled her heart 3 times before she came around. She was dead for 20 minutes. Two days prior she had 3 stints placed in one of the main arteries in the left side of her heart. She was actually in the process of moving to a normal floor and Kris (her daughter) said her blood pressure started to drop. It continued to drop until she died. They didn't think she was going to make it, especially to ever get off of the ventilator. They said with blood flow stopped, even though they were bagging her and doing chest compressions they didn't know if her organs would be working. Slowly each day, each organ improved. She is 80 years old - and still a fighter! We had to drive down to Illinois (they told the family she wasn't going to make it) and we just got back home Tuesday night (5/13). We were all laying our hands on her while praying for a complete recovery! Some of her children are not living for the Lord, and I noticed they looked while rolling their eyes when prayers would be said. Most of her children are trusting the Lord for her life and healing though, which is great. Each day, many of the family would arrive to sit with her, comfort her body with massages, and keep an eye on the medical team that was helping her. All would continue to ask questions to keep informed on her care. What a testimony to all about God's amazing love for Mom! She is an amazing woman! Her first "2 words" when she was able to speak were "Thank God"! This being only a few hours after she was taken off of sedation and off of the ventilator on Monday. She is doing SO well, more then the doctors ever thought she would. They actually moved her from the intensive care unit Wednesday, down to a regular floor. They are trying to start soft foods so that she can get some good nutrition in her. She is so weak - please pray for continued strength within her body. They had to use a lift to place her "sitting" in a chair. She has a long road ahead of her with rehabilitation to strengthen her muscles, but we are so glad that she is still with us. She is so weak and really doesn't understand why. She knows that she was dead and is now alive and continues to praise the Lord for a second chance with her life. It was such a shock to receive the phone call that we needed to go to Illinois, especially with our 5 youngest children still at home. Our precious neighbors, Dave and LeeAnn, took 4 of our children to care for them, another dear friend, Bob, took care of the dogs, and Sarah's nurses were placed on alert that they couldn't get sick, as we wouldn't have anyone to take care of her otherwise. I couldn't believe that I actually had peace about leaving Sarah alone with them, knowing that some of Sarah's nurses aren't with her that often. I also will get the frantic call "Diane" every so often while they are caring for her, and I go running into her room to assist. I am thankful that the good Lord was watching over all of us. We actually had a blow out on the freeway as we started our journey down to IL. We were praising God that it was a rear tire, and not a front one. After waiting 2 hours for a repair we were finally on our way again. We had to go to 3 different repair shops to get the job done (one place was closed). The last place had "one" tire left that matched the tires on Rik's car (pretty amazing to us, but not for God). Back on the road again... I couldn't believe the construction going on down in IL. with the roads. We were also blessed that it didn't happen on those roads, especially at 3:00 AM, as we were feeling pretty tired by then. Sarah is doing well. When we got back home she actually looked like she had grown a little, so did my other children. Her hemoglobin continues to be fine without any medication. I have been giving her chlorophyl which helps your body produce blood. She is doing well with being on room air for most of the time. We continue to use the "nose" for a good portion of the time that she is awake. For the most part, she is only placed back on the vent to help moisturize her lungs. Sarah continues to have strange sleep patterns. I continue to blend up vegetables in the blender to feed her. HELP NEEDED - Does anyone know any goat breeders where I can obtain Nubian goat milk for Sarah? I prefer to purchase it fresh from the farm, not from a store where it has been pasteurized, homogenized, etc. If so, please email me - thanks! We have an appointment for Sarah with a special doctor to try to get permission to obtain a stander for her. Everything is so expensive, and if we don't have a referral then we have to purchase the equipment on our own. Please pray that he will be receptive to let us obtain different types of equipment that is needed to help Sarah grow, and become stronger. Thank you for all of your continued prayers and for your faithfulness to pray! Prayers are SO powerful and God is worthy to be praised!!! Blessings to all of you today and always! Diane UPDATE: 4-30-08 Hello, Life has been busy... winter... winter... winter... I continue to pray for spring - any day now (it's snowing 4/26/08 as I write this). Sarah has been doing well. I am sorry for not updating. I forget that when she is doing well, to let everyone else know, so that they can give God the glory too! Sarah is on nose, 10-12 hours a day, most of the time. She is on room air about 80% of the time now! Her teeth are all in, so we are finally done with that. She is 29 1/2 inches long, and weighs in at 19lb. 13 oz. She is full of smiles, and loves to play with her mobile and look at herself a lot in the mirror. She makes kissy sounds at times, and other sounds in her throat, as if she ''knows'' she is doing it. We haven't tried the paci valve for the past couple of months (this would allow her to vocalize). Hopefully, now that her saliva is down from the teething, we can try it again. We haven't tried her on the mask lately either, as it seemed to create too much yeast growth around the trach, so when her secretions get too thick on the nose, then we place her back on the vent (no rate and usually room air). We continue to pray for stronger lungs, and that her heart will become stronger and shrink back down to normal size! We continue to work on her diet, to help with stooling issues. She will be going to Children's Gillette in May to have a check on her spine, and her right wrist. Pray for her spine to be fine! The rest of the family is doing well - trying to keep up with home schooling can be tough at times! I have been going through some online testing and have learned that they are still pretty smart, even through all of my faults as a mom. Blessings to you all! Thank you for all of your prayers for Sarah and our family! Please continue to pray for our finances and for the studio! The website has been re-done - check it out when you can! God Bless, Diane UPDATE: 3-5-08 Hello Everyone, It has been quite some time since I have written an update. Times seems to slip away from me - too often. Our whole family was suffering through the "crud" this winter, over the last month, and Sarah finally came down with it over the past 2 weeks. She seems to be on the mend now - pray for a quick clearing of her sinuses , ears, and lungs. She has been such a bundle of joy - we are working with more strengthening and stretching - using a big ball to lay her on and moving the ball back/forth. We continue to try to increase the time off of the ventilator, but with this cold stuff going around, we have gone backwards. Hopefully, we can start to push her again soon. It seems like most of her teeth are finally in - maybe her 2nd year molars are left... A lot of drooling going on... She now weighs in over 18 lbs. She continues to try to grab things, and is getting better at head control. It sure is a long haul for her, but she is so content through it all. She is such a happy, little girl. We lift our hands and praise the Lord each day for her - she loves that exercise and smiles through it! We seem to have her on a regular bowel program now - her abdominal hernia isn't getting any worse, so we are hoping to keep her from requiring the surgery. We are using the kinesio taping method on her abdominal area, and it seems to be helping her a lot. No more crying through stools. If anyone would like to bless us with a roll of kinesio tape, we would love it, as it doesn't last very long, and it isn't covered by insurance as it is a holistic approach. It is found at only a few drug stores. Size 3 diapers (walmart brand - yellow box) would also be much appreciated, or #1 gerber baby vegetables - any kind. Sarah's unpaid milk bill is at $12,000. We are thankful that they are willing to work with us. If you know of anyone that knows how to do a fund raising dinner, or something to help Sarah, please let me know. I have been at several of these over the years, but don't know how to put one together, nor do I have the time. Quick update on the rest of the family - Jeremy is doing well, in college, studying auto repair, working out, and working full time - always busy! Josh is still in China, but is prayerfully considering coming back to the USA this fall to go to college and train under Rik in audio production (he has been in China for 4 years). Jesse, my oldest, is working full time and trying to figure life out, and what plans to make for the future. Nathan, Angela, Shanae, and Luke keep me very busy at home - we are still trying to figure out a schooling routine that will work. Rik is busy at the college, still running the program/teaching pro tools and audio production, and trying to get the new studio facility off the ground. Can I say, "How many hours in a day do we have for free time"? Please pray that the Lord will use the recording facility in a mighty way to spread His word through music! I believe this will be a mighty year in Music for the LORD! A new sound will be brought forth to bring many into his kingdom! Please join us in prayer - thank you! It is hard to advertise when the budget doesn't afford to. Pray for the many financial decisions that are ahead. We are trusting the Lord for his way to be revealed in this area. I don't have anything new to tell about my health. I have placed it on the back burner, so-to-speak, as finances just don't dictate seeking out any help right now. I can't seem to obtain any referrals to see a surgeon that has experience, or even a 2nd opinion, as my doctors will not refer out of their network - so nothing new to report. They say that the tumor needs to come out, as they believe it is possibly a rare type of cancer, but they won't refer me to anyone that has experience (their 2 doctors are learning to remove thyroids). I don't want to be part of their learning curve. I have found that they can't really tell anything, until they remove the thyroid with the tumor in it. If it is this rare type of cancer, and has already spread, the 85% mortality is 5 years and we are praying that they are wrong anyway! I know that God can heal me of this whole situation, as I have seen miracles and know that he is in control. I just don't have peace about moving forward with anyone at this point. Please pray for His will to be shown in this medical area. We are humbly seeking His presence in everything we do, and ask you to join us in prayer for His will to be done in our lives. I continue to pray for all of my children to seek the Lord and his ways all the days of their lives! We continue to thank the Lord for all the time we have with Sarah and continue to pray that he will use her life and ours as a testimony of his great love! Many blessings to all of you as you continue to lift our family up in prayer! God Bless, Diane UPDATE: 1-30-08 Hello all, Sorry I haven't written for awhile. ?Sarah is doing well - we continue to try and wean her off of the vent, and onto the heated collar, and trach nose. ?She is teething, so a LOT of drooling going on. ?She does need another surgery to repair the abdominal hernia that has re-opened, but we are hoping to wait until spring, after the bug season. ?It would be wonderful if the good Lord would just heal those muscles and bring them back together on their own! ?We continue to praise Him for each day that we have with her. ?Sarah is such a content, FULL of daily smiles, little girl, unless of course she is trying to poop, or gagging from the trach, or spit in her mouth. ?We continue to try to help her gain head control, and help with reaching, grasping, and shaking things. ?She loves her little baby that she got for her 2nd birthday from one of our nurses. ?The baby says, "I love you, and gives kisses". ?Sarah likes to try to kiss her baby, and loves to stare at her. ?She needs much prayer for muscle tone, lung development, and for her heart to shrink back to normal size - very easy for the Lord to heal! ?She weighs in at 18 lbs now, so she is gaining weight and she seems to be tolerating her new recipe of food. ?We are still working on trying to regulate her bowel function... I haven't found any 2nd surgeon, or 2nd opinion doctor - I can't get a referral to have any, so I am just not doing anything right now. ?The surgeon that they want me to use is "learning to operate on thyroids". ?We are in much prayer over the situation. I want to thank all of you for your continued prayers for Sarah and our family! ? P.S. ?If you know of anyone talented in the music area, please tell them about our new studio - thanks! ? God Bless, Diane UPDATE: 12-24-07 Hello All, Sarah has been struggling with stooling again lately. ?Her oxygen requirements have gone up and down each day. ?We haven't been able to place her on room air lately. ?It seems to be related to ''how full'' her abdominal area is as to her oxygen requirements going up. ?Please pray that we can figure out ''what'' will work for her. ?She is such a happy baby when her insides are?working properly. ?We continue to praise the LORD for each day we have with her. ?She is such a sweet gift from above - please continue to pray that we will have many more years with her and that her health will continue to improve! ?Please pray for her heart to heal and return to normal size. mommy update - insurance struggles right now - nothing new to report. ?I'm trying to figure out ''what'' clinics and doctors to go to for a 2nd opinion, and surgery. ? Please pray for peace within our family - so many struggles going on - life is crazy right now, and we need to Lord to carry us through. ?Your prayers are MUCH appreciated.? Blessings to you all this Christmas and throughout the coming years! Diane UPDATE: 12-17-07 Hi Everyone! Sarah is two years old now! ?YEAH!!! ?Praise the LORD! ?She is looking at her birthday baby that she received from Janelle, one of her night nurses. ?It is hard to imagine that we have been blessed with 2 years with her! ?She is a very happy, little girl, now weighing in at 17lb. 5 oz. and is 28 1/2 inches long. ?She is slowly weaning off of the oxygen and the ventilator. ?She has 2 more teeth in the bottom - the 2 eye teeth, and boy these (I think) are causing some heavy diaper rash on her little bottom. ?She usually doesn't get any rashes, so this is new. ? She is such a JOY, I can't tell you in words how blessed we are to have her in our family! ?We continue to pray for healing within her lungs and for her heart to return to normal size and rhythm. ?She also is having some slow bowels again, and I'm not sure what is causing it yet. ?We have introduced new foods (peas, carrots, squash, sweet potatoes, green beans, pears and prunes). ?It might be too many different foods too often, I'm not sure. ?I am not used to baby foods, as I nursed my other children until they were much older then her. ?She seems to respond with the smooth move tea, and ginger tea, which is good. ?Please continue to join us in prayers, we have faith and believe in our Lord to provide, and answer our prayers, Yes, and Amen! ? Diane UPDATE: 12-14-07 Hello All, I think this email will work - sorry about the previous email that was blank. Go to this link and see 4 of our children - you will be blessed! http://www.elfyourself.com/?id=1357483062 Thank you for your continued prayers for our family! May the LORD richly bless you throughout the Christmas season and the coming years! God Bless, Diane UPDATE: 12-7-07 Hello All, Sarah is doing well. ?She had 13 hours on the nose a couple of days ago. ?She is doing great! ?She is taking peas, sweet potatoes, squash, carrots, pears, and green beans in her feeding tube and doing well. ?She is getting better at her head control now. ?For the 1st time, I brought a collie puppy in for her to see. ?She took both hands and started to touch the puppy, which was such a surprise - as she usually will only use 1 hand at a time in reaching for toys, or anything. ?She seems to be getting over the cold, or whatever she had. ?Her oxygen use is going down, she is weaning well. ?She is cutting her first pointy tooth in the bottom, left front. ?3 more teeth and we should be done for awhile. ?She is drooling a lot these days, and has broke out in a rash on her bottom. ?I hope it is related to her teething. ? Sarah is going to be 2 years old on Dec. 12th. ?I can't believe that we have been blessed with her for 2 years! ?Praise the LORD. ?She is so sweet, and such a happy girl. ?Her smiles light up our days. ?I look forward to the day when she can get off of the equipment she is on, as we continue to pray for healing on her lungs and heart. ?Please continue to lift Sarah up in ?your prayers - God is SO good! ?She weighs in at 17 lbs. 6 ounces, and is about 27 1/2 inches long. ? Update on ''mommy". ?Well... ?the 2nd opinion was NOT a 2nd opinion. ?The specialist doctor - she MISSED my thyroid ALL 6 times. ?SO... ?I am going to the hospital on Friday afternoon for a 3rd biopsy - this time the big ones, or core biopsies. ?After getting poked 6 times, my neck has been killing me... ?I can't believe that she missed my thyroid all 6 times. ?The 6th time she actually hit my trachea, and I heard a crunching sound, and felt a shooting pain into my right shoulder. ?The only thing I can figure that was "good'' coming out of this is - maybe the Lord is trying to humble the doctor that was so sure of herself. ?I wonder what she thought when she read the report, as she wouldn't even call me. ?I am not looking forward to larger needles, and larger samples. ?I am praying that this time they will actually get some thyroid tissue and tumor tissue to see if the cancer has spread, or is spreading. ?The specialist is not doing the core biopsy, of which I am glad, since she missed my thyroid the last 6 needles. ?I kept asking her during the procedure ''how'' she knows that she is ?in my thyroid and the tumor, as it didn't look like she was in it to me. ?She tried to keep showing me on the ultrasound, yet I still couldn't see the needle going into the tumor. ?Well - now I know why, as it wasn't... ?amazing what ''the unlearned'' can see... Please pray for my neck to ?heal fast, and for good results! ? Much love, Diane UPDATE: 11-18-07 Hello All, Sarah has been doing very well! She has continued to wean off of the oxygen, sometimes going a few hours each day on room air. Her requirements are less then they used to be at 1/32 up to 1/2 liter of oxygen. She is on the pacimere valve twice a day for 1/2 an hour and doing well. She realizes she is on it, and tries to make some small sounds. She is having problems having regular bowel movements. I don't know if it is due to increasing her calories, or not. I am hoping that she will adjust soon. Any ideas? Sarah is such a sweet girl - she loves to smile, and play with her mobile. We continue to work with strengthening her muscles to hold her head and working with sitting with support. Please continue to pray for healing for her lungs and heart! I am going in for a 2nd biopsy on the 27th for my thyroid. Keep the prayers coming - thanks! God Bless, Diane UPDATE: 11-13-07 Hello Everyone! Sarah is trying to win $2,500. in a contest this month (Nov.) to be used to help pay for the breast milk she has been drinking. :) See the link below - Thanks for your vote! God Bless, Diane http://cdbaby.com/cd/stirlingsound UPDATE: 11-12-07 Hello All, WONDERFUL PRAISE REPORTS!!! A few days ago... Sarah started to breathe ROOM AIR - the first day was Tuesday, 11/6. She breathed room air for 2 hours asleep AND 2 hours awake. She was doing great, so we decided to see how she would do on the nose. We then switched her to the nose and she required 1/4 liter, which is less then what she usually was on. This is SO great! Sarah hasn't been on room air for OVER a year! Since Tuesday, each day she has been on room air for a few hours, during different parts of the day - usually when she is sleeping we can turn the Oxygen off or very close to off (1/32). Even on the nose today, she required 1/16 to 1/4 liter of Oxygen. Sarah is So blessed and so are we! Pacimere valve progress - she has been doing great with this - she is making some small sounds and likes to blow bubbles with her spit. She handles 1/2 hour to 1 hour so far. We almost thought Sarah finally had her days and nights straightened out, and then last weekend she slept in late, and now she is back to staying up for most of the night and sleeping for most of the day. Please pray that we can get her back on a routine of days/nights the ''other'' way. Sarah hasn't gained any weight the last few weeks, yet she has maintained the weight she has. We are starting to give her a little bit more olive oil and cod liver oil, to see if this may help. She weighs in at 17 lb. 6 oz. I'm not sure how long she is, but her length looks good for her weight. She continues to improve with her head control, and using her arms/hands. She seems to favor her left hand the most. At times she has been able to shake her rattle, and she seems to really know she is doing it and shakes it like crazy and smiles a lot! I don't know if she uses her left more then her right possibly due to sleeping on her right side the most, so we are going to try making her sleep on the left more to give the right side a better work out. Or, maybe she is left handed, like her mom? Please continue to pray for healing for her heart, and lungs - THANKS! Also - her intestines - regular bowel movements, and for the hernia, by her belly button, to not increase in size - to completely heal. On my thyroid news - I am going to see the doctor next week, so I don't have any new news yet. Please pray for strength and the words to say during all conversation between me and the doctor. I am going to see a woman that many have said is ''horrible personality wise'', or the worst of all the doctors in the area by which we live. This fits right up my prayer request... I have heard of a couple of good doctors that I am hoping to be able to be referred to, but I know our network is VERY hard to get referrals out of their network, and they are very far away. Please pray for needed funds and sitters for doctor trips. Blessings to you all! Diane UPDATE: 10-10-07 Hello Everyone, Sarah has started back on the ''nose'' again. She seems to be doing well with it. We have her between 3-6 hours a day on it now. We tried her on the humidified collar a couple of days ago, and she actually handled it for a few hours. Please pray that she continues to improve with breathing. Sarah's right ear seems to have an infection, along with her right eye, and nostril. Sinus infection, possibly. Pray for a quick recovery - God is SO good! My biopsy came back ''not so good''. They say I have a rare form of thyroid cancer. Only 4% of thyroid cancers are this, I guess. Radiation does not work for this type. Re-occurrence is high within 5 years, and has a high mortality rate within 5 years, if it has spread. They are going to have me talk with an endocrinologist, but I don't know when yet. I am not sure what the next step is, and I am not the ''doctor trusting type'', as most of you know, so I don't know how much I will go along with anything they tell me. Please pray for wisdom, guidance, and discernment in the decision making process. My talk with the Lord before finding out my results... I was driving back from the cities, and said to the Lord - "Lord, help me find a good christian doctor, so that he will be looking up to you for guidance along the way", IF I need one. Then I was reminded by him of the neurosurgeon that Jeremy had, when Jeremy was in his motorcycle accident last year. This man was NOT a believer and VERY much against God. I continued to witness to that neurosurgeon, and constantly ''rebuked'' him in the name of Jesus, verbally. His face would always turn red, and he would raise his hands up in the air, and say "I hate that word, as long as I live I am never going to forget that word". Of which I replied - good, God doesn't want you to forget it either. He would constantly call me "lady" when he would get mad, and say - you just don't get it do you... Anyway... I was reminded of him, so then I changed my words to this: Lord, if I need a surgeon, please find me a GREAT surgeon, but let him be UNsaved, and the most arrogant-ass you can find, so that I can be a mighty witness to who you are. I kind of chuckled after that, and had such a peace fill me - words cannot describe it. Well... I was hoping I wasn't going to have to talk with any other doctors, but here we are now. I know the Lord can change any tests, and I KNOW he can heal and remove tumors - as he has in the past! I continue to trust in Him - and I would love for all of you to continue to pray for me - pray that I will be a mighty witness in all my days ahead! Thanks to all of you for your comforting and encouraging words! Please continue to pray for our finances - we are very strained these days, trying to hang in there with everything going on. Please spread the word about our new studio (www.stirlingsound.com) - I know the Lord has wonderful plans for Rik. Pray for a peace within his heart, strength each day to take care of things, and a love that never fails in serving Him! God Bless, Diane UPDATE: 9-29-07 Hello All, First, I want to thank ALL of you for your continued prayers for Sarah, Jeremy and our family! Sarah, seems to be slowly improving in the ''lung department''. We tried her on the ''nose'' for the first time 4 days ago. She went 5 hours the first day - praise the LORD! The 2nd day, we only did 3 hours, and the 3rd day, only 3 hours. It seems harder for her due to the extra floppy lungs, but we continue to push her a little each day, off of the vent. Please continue to pray for healing within her lungs - thanks! Sarah had her check up for her ears, this past Wednesday. They cleaned them and said they look fine, with the tubes still in place. We continue to try to wean Sarah off of the donor Mother's milk, due to the cost involved. Pray that this transition will continue to go smoothly. With her diet change, she seems to be having more difficulty pooping, and we hope this will subside. As always, and in all things, praise the Lord for his wonderful works! Jeremy is pretty much back to himself, or so he says! He is jogging 3 miles a day, working out everyday, back to college, and working full time. He is so busy, I miss him terribly. UPDATE: 9-15-07 Diane just called and asked if I would send out this quick prayer update on Sarah. Prayer request for healing for Sarah's lungs, she is requiring lots of assistance to breath today. She was doing well yesterday, so this is a sudden onset. Planning to do a chest x-ray today. Pray for healing and the Lord's wisdom! UPDATE: 9-13-07 Hello Everyone, Sarah is still trying to recover from her floppy lungs. We are still not able to start her back on the ''nose'' yet. Please continued to pray for healing within her lungs and that the LORD will strengthen her heart and heal it too! She is peeing well - praise the LORD! Her incision is now healed, atleast on the outside. We are trying different ideas for food, as we are trying to wean her off of the donated breast milk that we have to purchase, as our bill is quite high, reaching the $16,000. mark (she couldn't tolerate anything else, and I couldn't pump enough for her, so we purchase milk from a mother's milk bank). We are praying that the LORD will provide to cover this expense, as we look for alternatives. Any suggestions that are natural based that might work for Sarah's nutrition, please email me - thanks! God bless all of you for your faithfulness to pray! Diane UPDATE: 9-4-07 Hello All, In regards to Sarah, she was recently in the hospital on Aug. 2nd, for "placing tubes in her ears to help them drain better", to fix an abdominal hernia that they had caused last Dec., and to close her vascostomy. The first 2 days/nights they "accidently" set her ventilator settings incorrectly and blew her lungs up to 2 and 3 times her normal pressure support. Unfortunately, I didn't catch it until after the first 2 days/nights. She was on a LTV950 at home, and the hospital had a LTV1200. These machines work differently, and no one thought to check settings and modify when she first arrived. The sad part is we had brought her to the hospital on what they call a "nose", which means she was only using an oxygen tank, not the ventilator. Sarah had been off of the ventilator between 10-12 hours a day before her hospital stay. Now, her lungs are VERY floppy, and sound horrible. She is requiring additional Oxygen these past few weeks since she has been home. We are starting her on Pulmicort and Tobra nebs tonight to see if either will help. She has been on Xopenex, but it doesn't seem to do anything. Please pray for Sarah's lungs and heart! We are praying that Sarah's lungs will regain their elasticity and quickly! Good news: her bladder seems to be working well after the vascostomy was closed. Her hemoglobin continues to lower as her 2 blood transfusions that she had while at the hospital should be about gone in her system now. Pray that her body will make a new blood supply so that her breathing won't be compromised by this too. Thank you for your continued prayers for Sarah and for our family! We need them and appreciate all of you! God bless, Diane UPDATE: 8-20-07 Hello All, Well... Sarah is still trying to recover from the infection in her incision. We extended the antibiotics and it is finally looking a little better. Her lungs are still sounding floppy, with little or no secretions to speak of. We had started her on Tobra nebs last week, as we were wondering if pneumonia was developing, but it seems like it is just the sounds of her lungs that were inflated incorrectly while she was hospitalized. It is so sad, as she had been doing so well off of the vent for 10-12 hours a day, and now she is set back for a while, because of the hospital incorrectly setting her vent settings. We are praying for her lungs to regain their elasticity and SOON! We are going to try and take her foley catheter out on Monday and see if her bladder is healed enough to work on its own now. The doctors said that it can be very painful for a few days after it is removed. She will have a lot of warm baths to help with this. Pray that we won't have to periodically catheterize her, that her bladder will now work fine. On another note - prayer and praise reports: Josh, my 22 year old son, is going back to China - pray for a safe trip and for God's wisdom in his life. Jesse, my 26 year old son, fell off of a cliff this weekend - his right thigh is hurt badly, but no broken bones. Jeremy, my 20 year old son, is still recovering from his motorcycle accident - he is doing great! Praise the LORD in all things! Thank you all for your continued prayers and encouraging words! Blessings, Diane UPDATE: 8-9-07 Hello All, I am sorry for not updating sooner. My cell phone was dead, so I couldn't make any phone calls, except local ones, or use a calling card. I didn't dare to leave Sarah's room since her surgery on 8/2 until she was able to come home on 8/7/07. Sarah is back home now. She had her bladder repaired, so after healing, she should be able to pee normally again. Her abdominal hernia was repaired (she wasn't born with this, but it developed when her belly was so distended last Dec., due to negligence). The ear doctor was able to place tubes in both of her ears and we notice a difference in her ability to hear. Sarah also had a skin tag removed from her middle toe on her right foot. PRAISE THE LORD FOR HIS GLORIOUS WORKS IN HER LIFE!!! I can't say the last 6 days have been great though... From Thursday 8/2 until Tuesday 8/7, I only had 1/2 hour of sleep, finally on Tuesday morning, and 2 "15" minute cat naps on previous days... I have literally been living on His strength this past week. Sarah ''code blued'' twice, and needed 2 blood transfusions, and currently has an infection in the incision on her belly. I will try to share Sarah's continued struggle for life... Sarah went to the hospital on her ''nose'' and was doing great. We arrived at the hospital on Thursday, 8/2 around 11am. We checked her in, signed release forms for her surgery, and she went in at 12:30. The first surgery was a bronchoscopy (looking down her lungs to see how they are doing and checking her trachea size. This doctor also placed the tubes in both of Sarah's ears to help the fluid to drain. The surgery went well. The next surgery followed, which was removing the skin tag on Sarah's middle, right toe. This surgery went well. The last surgery was the vasecostomy take down, and abdominal hernia repair. This was the major surgery part, and took the longest. Since Sarah has a pacemaker, the doctor told me that he could not cauterize to stop the bleeding, but had to place additional stitches, which made the surgery take longer. He said the surgery went well too. Sarah was finally admitted to the 5th floor around 6 pm. Around 9pm, her lungs started sounding very coarse. She continued to deteriorate, needing additional oxygen. Around 2am-2:30am she was placed on 100% oxygen, and was still dropping her saturations. The nurse left to call the rescue first response team, and while gone, Sarah's stats started to drop drastically. I started to think that she might have a mucus plug in her trach (she never had one before, but I had heard about them). 2 other nurses were in the room at the time (not Sarah's nurse), and I asked if either would help me to change her trach. One replied, "why don't you wait until your nurse gets back", and the other replied, "maybe you should wait until the respiratory therapist arrives, or the rescue team". I couldn't believe what I was hearing, so I said, "fine, I'll do it myself", as Sarah was dropping fast and turning blue. I grabbed a new trach, opened the box, and was about to take the old ties off, and Sarah's nurse came in. Now, she didn't know what was going on in Sarah's room, as she was dealing with the on call doctor on the phone, who didn't know what was going on with Sarah, AND he had hung up the phone before she could give him an update. She came around the bed and ask, ''what are you doing", to which I said I wanted to change her trach as I believed she had a mucus plug. I asked if "she" would help me and she said "yes". I was trying to take the trach ties off and couldn't find a scissors in her room. She had a scissors and cut the trach ties off for me. I then took out the old trach from Sarah's stoma, and placed the new one in. I started to suction her, trying to give her a clear airway, when I heard the intercom system say, "code blue, 5th floor". I knew that it was for Sarah. About 20 people entered Sarah's room, and a man asked me what was going on. I explained the situation to him, and he took over. They lifted Sarah's old trach up in the air to examine it and couldn't believe the junk on it, hanging down about 4-6 inches. They said it wasn't considered a mucus plug, but a total obstruction of her airways. He then took out the new trach, as he couldn't suction it clear either, and started to place some water in her lungs, and flush them out, while continuing to bag her. This went on for about 10 minutes, and they were finally able to obtain an airway for Sarah to be able to breathe. The rounding doctor finally arrived and wondered what was going on. I apologized for having to wake him up, and told him that Sarah had a mucus plug, or something and needed to have her trach changed quickly. I had to repeat myself twice and then the nurse stated that I had been concerned about her PIP's being high and the rate, and settings. He then said, ''why didn't anyone tell me that her PIP's were high? Obviously, she had a mucus plug and the lasix that he had ordered previously when he hung up on the nurse wouldn't have helped. My nurse was angry, as she had told a nurse when she had called for the rescue team (this first "code blue" had been cancelled by someone). He then changed Sarah's rate of 20 bpm down to 5 bpm and left the room. After that was over - I was up for the night... Friday begins... Sarah continued to sound like she swallowed a gallon of water. Nurses and Respiratory therapists(RT's) would continued to come into her room, flush her lungs with water, and suction her, trying to clear her lungs - it didn't work - they couldn't get anything out each time (this is unusual for her AND she was clear when we arrived at the hospital). By Friday evening, I was truly bothered by her vent settings, and felt the Lord's pressing me to question her settings on the vent. I studied and stared at the vent she was on, and felt the Lord telling me that it was incorrect. I had the nurse call the RT and they came to answer any questions I had about the hospital vent that she was on. I explained that I thought her settings were incorrect, and tried to explain why. I told her the type of vent she was on at home, and explained ''how'' I thought this new vent worked, compared to her ventilator at home. The respiratory therapist to my horror, asked me how I knew so much about this new vent, as most of the hospital didn't even know how it runs yet. I said it was a God thing... She said I was absolutely correct that they had been over ventilating my daughter, and that her settings were wrong. I immediately changed the settings and removed the remaining 5 bpm rate, and didn't wait for a doctors order (these took forever - sometimes 2 days). To explain - at home her pressure support was 7 for her own breaths (she didn't have any breaths at home that were given to her so that part was turned off), and at the hospital they had her on 19 for each of her own breaths and 26 for breaths that were given by the vent for her. They had copied the numbers off of our own vent, and hadn't realized that the 2 pieces of equipment ran VERY DIFFERENTLY. One vent you add the ''peep'' into the formula, and the other vent you subtract the ''peep'' into the formula. Now, this explained Sarah's lung sounds, as ''floppy'' lungs sound like you have a lot of fluid in them, yet the lungs really don't - this explained why we couldn't get anything out when trying to suction her from the trachea area. I had a nurse that continually ''accidently'' suctioned her down to the 9 mark, instead of the 6 mark on the suction cath. She stated that her ''hand slipped''. It got to the point that I would grab her arm and state to her loudly, ''you are only supposed to suction down to the ''6'' mark, do you understand?" She always replied that she was aware that she was only supposed to go down to the 6 mark on the suction tube (if you go down farther you can wreck the center of the lung area). I could understand the first time making a mistake, but this went on for 3 nights, each time I had to try and stop her from going down too far. One of the RT's would constantly have to be reminded to only suction down her trach to a 6 too. I was getting SO tired of having to keep an eye on everything, and having to request tests, or procedures to help my daughter. I finally decided that it was better for me to suction myself - hence ''no sleep during the night shift'' for 3 nights''. She would continually untape Sarah's foley tube that I had taped on her leg to help prevent it from tugging and cause additional bleeding. It was strange - this would happen, if I went to the bathroom, or closed my eyes for 5 minutes, or went to get a drink of water. My tape job would be removed, or come undone. Now, I could understand this "IF" Sarah had been awake and moving around, BUT she had been sleeping each time. I confronted her about it that I didn't want my tape off as I was concerned that the foley would get pulled and Sarah would then bleed more. Sarah's bleeding increased during these shifts each time. I knew her hemoglobin must be getting pretty low - she was starting to look dusky at times. Saturday begins... By now - Sarah's increased oxygen needs and her breathing continued to not look right. I requested an xray and it revealed what I thought - her lungs were pretty deflated, due to over inflation and now under inflation. I also requested a hemoglobin check, as Sarah's urine looked like all blood now for the past 2 1/2 days. It came back 7.1 - she needed a blood transfusion... It started to seem like a fight to get any help - I always had to ''ask'' to have things done. She finally received a blood transfusion, but it took almost all day to get one. The respiratory doctor comes in Sarah's room. He wants to discuss Sarah's home vent, hospital vent and her setting changes, or mixups. He brought an RT along to help with this process for him to understand all of the vent changes. He had gone to school for 8 years and was very knowledgeable in ventilators, etc. I told him how "I'' thought the 2 vents worked and why I thought her settings had been incorrectly set. He looked at the RT and asked her a few questions too, and then admitted that I was right and that Sarah had been vented incorrectly for 3 days. He agrees with me to up her pressure and peep to see if we can open her lungs back up and help her to breathe better and obtain another xray in the morning. Sunday begins... Her hemoglobin had come up (9.1), but was still below normal. I wanted a 2nd blood transfusion, but waited all day for the doctor to make rounds. He never showed up to check on Sarah. So I had to wait another day. Monday begins... Early in the morning, Sarah struggled with her first neb treatment. She seemed to drop her sats while the medication was being administered. I thought maybe it was due to the machine being hooked up to the air on the wall, instead of the oxygen on the wall. She argued, but agreed to switch and then Sarah's sats came back up. Her saturations had been dropping fast, and I didn't know why. This same RT woman came back at 8am to give Sarah a nebulizer treatment for her lungs (she was having these every 4 hours). She placed water ''again'' in her lungs (thinking that she is congested) and couldn't suction anything back out. At the time, I didn't notice it, but she hadn't re-connected the blue oxygen tubing back together for Sarah, and had placed a 100ml saline bag on top of the disconnected tubing to hold it on the bed (placing a saline bag on top of the tubing was commonly done to keep the tubing from falling off of the bed and pulling on Sarah's trach, but not in the area where she had placed it). Sarah's stats started to drop immediately. She had already taken her gloves off and said that she hadn't been able to get anything out of her lungs, and acted disgusted and was going to leave. I said that it sounded like she had poured a lot of water down her lungs and to try again - she was struggling at this point. She then looked back at Sarah and all this woman could comment on was "wow, would you look at that - she is cyanotic". She wondered if she had a bronchial spasm or something, but kept commenting on how ''cyanotic, or blue'' she was turning. I couldn't believe what I was seeing - her oxygen saturations were down to 4, 3, and finally nothing. I saw Sarah lying there lifeless and this woman was doing nothing to help. No ''code blue" button was pushed to obtain assistance by anyone. Again... I said - we need to bag her, and change her trach - maybe she has another mucus plug, or something. My nurse then said - yes, we need to bag her and agreed to change her trach with me. Sarah pinked up from bagging and we then changed her trach and went to place her back on her vent. AGAIN - she started to drop her oxygen saturations and this is WHEN I discovered that the oxygen tubing had been disconnected under the saline bag, as I saw the respiratory therapist ''lift the bag and re- connect the tubing". I was in total shock and disgust over the whole thing. I now was wondering if she had done something similar during the last treatment as Sarah hadn't had any problems with any other neb treatments, or RT's. I couldn't believe that so much incompetence existed each day for the past 5 days. Later Monday morning, I asked for another hemoglobin check as I wanted to see how much her blood transfusion had helped her. Her hemoglobin was lower again (8.4) from the previous day's transfusion, so I requested another transfusion. Everything seemed to be such a fight to obtain assistance for her. We decided to place her back on her home settings and check a blood gas. It checked out ok after 2 hours, so we kept her settings at her home ones. Tuesday begins... The surgeon that fixed her bladder and abdominal hernia - FINALLY came back to check on Sarah, as I complained that Sarah's incision looked infected and he needed to be called. The other doctors wouldn't prescribe anything as it wasn't the area that ''they'' had operated on. The surgeon didn't agree and wouldn't prescribe anything. Just to fill you in - this particular surgeon did NOT check in on Sarah at anytime after her surgery on Thursday. It was now Tuesday and I am looking to go home and he shows up stating, "Hi, nice to see you... I thought you had gone home on Friday". He said he had signed off on her paperwork after her surgery on Thursday and thought we had left. It seemed like a strange comment as it was his surgery that required Sarah to stay for 3 days, not the other 2 surgeries, I was told. My nurse had called him on Saturday, and he was very rude to her on the phone and again was very rude to the nurse on Monday when she tried to call him. I figured I would have to wait until we brought her home and then get some antibiotics quickly. The rounding doctor then came in and said that Sarah's hemoglobin was now 12.4 and her CO2 gas looked good and that she was discharged and walked out of the room. I think they had had enough - I know that I had. We left... Sarah is home now - smiling and enjoying her crib, nurses and family! She is so attentive, and seems to enjoy being able to hear things better. She has learned to take the socks off of her hands by using her teeth. She is such a joy! Please pray for healing within her bladder, healing from the infection in the abdominal incision, healing within her ears from the ear placement, protection from any bladder infection until we take out the foley catheter, healing for her lungs, and continued healing for her enlarged heart. Thank you all for your prayers and words of encouragement. Blessings to you all - keep the prayers coming - thank you again! Diane UPDATE: 7-30-07 Hello All, Prayer request: Sarah is set for surgery on 8/2. They will be closing the vasecostomy (hole in her bladder so that she can pee normally again), fixing her abdominal hernia, and placing tubes in her ear canals so they can drain properly. The abdominal surgery is serious, and we are praying for her to thrive through it well. We finally have the updated Echo report on her heart, that was taken back in June, and Sarah's heart is down in size (praise report), but she does have a few valves that don't seem to be working at their best (because of this she has some regurgitation that happens between the different parts of the heart). Please pray for continued healing for her heart too - thanks! Sarah is now up to 12-13 hours OFF of the vent, either breathing on the ''nose'', or ''heated collar''. She is doing excellent with this. Sarah's feedings are now done as a bolus feed through her G-tube, 8 times a day. No more feeding machine needed - Praise the LORD! We continue to work with Sarah on sitting up, head control, and strengthening her muscles. She has almost 11 teeth now - and can REALLY bite! We continue to rejoice and praise the LORD for Sarah's precious life! Her sweet smiles brighten up our days! Thank you for ALL of your continued prayers! It is so nice that God has placed all of you in our path so that Sarah can be covered in prayer - Thank you SO much! God bless, Diane UPDATE: 7-9-07 Sarah is doing well!  She is scheduled for surgery on 8/2/07.  She is ready to have her vasecostomy closed (this is the hole that was placed in her bladder to allow her urine to drain so that her bladder could shrink back down to normal size), her abdominal hernia repaired, and she will be getting tubes placed in her ears.  She has fluid in her ears and they can not drain, as her ear canals are very small.  Please pray that her surgery goes well and that her recovery is VERY QUICK! Sarah is now off of the ventilator for 8 hours a day (on the nose) and doing well with this.  We can increase by 1/2 increments, as tolerated.   She seems to need more humidity then what she is getting with the nose, so we are going to try the heated collar again with more oxygen.  She did aspirate some food a few days ago, so we are hoping that she doesn't end up with aspiration pneumonia again.  So far, so good, praise the LORD!  :) Sarah is almost 16 lbs. now.  We are increasing her bolus feedings and she is up to 6 a day (10 is the goal).  She is given 75cc over a 1/2 hour time, and is off feedings for 1 1/2 hours each time.  She is doing great with this transition from continuous feedings.  We have been adjusting her calories, and continue to try to figure out what her daily requirements are.  We continue to work with her head control, and arm and leg strengthening. I do appreciate your prayers and encourage you to continue to pray for Sarah's health - Thank you SO much!!!  We continue to rebuke the extra 18th chromosome that it will be null and void within her body and that her body will heal and be strengthened. Miracles do happen - God is faithful!!! God Bless, Diane UPDATE: 6-21-07 Hello all, Sarah went in for her check up on 6/19/07. Her weight last Tuesday was 15 lb. 9 oz. We have cut back her calories as she is gaining weight too fast over the past 3 weeks. They didn't take a weight on her at the hospital, so I am not sure how much she has gained this past week. She did have a bladder scan and emptying study, which shows her bladder is now shrunk back down and is emptying great! SO... we are hoping to have the vasecotomy closed up, along with her abdominal hernia that had developed last Dec. when she became so distended. Sarah had a echo done on her heart, but the doctor was up in Duluth, so we won't obtain any results until he gets back to read the report. Pray for good news on her heart! We are bringing Sarah in to the ear doctor next Tuesday, in hopes of cleaning her ears out, and checking to see if she can have tubes placed. If she is a good candidate for this, we will have that done at the same time as the vasecotomy and hernia repair. She will also have a small skin tag taken off of her toe on her right foot at the same time as the others. We are now on a G tube, instead of a G-J tube! Praise the LORD!!! We are starting bolus feedings "once a day", and will increase every 3 days to 10 times per day, or as tolerated. We continue to try to wean her off of the ventilator, onto the nose. We were set back for a while as she became sick with a cold in her lungs. We are at 2 hours, twice a day right now. Thank you for all of your continued prayers! Please pray for her lungs and heart to be strengthened and healed! We continue to pray for the extra 18th chromosome to be null and void in her body! God is So good and worthy to be praised! He has blessed us with such a beautiful little girl! God Bless, Diane UPDATE: 6-14-07 Sarah is over her cold, has gained another 12 oz. and is up to 1 1/2 - 2 hours off the vent, twice a day! She smiles a LOT when she is awake - she is so sweet! Thank you for your prayers for her. Specific requests: for her lungs to improve, heart to improve, and overall for the extra 18th chromosome to be ''null and void'' in her body! Nothings too hard for God! Thank you everyone for your faithfulness to pray for Sarah and for Jeremy's recovery. Keep the prayers coming and PLEASE add Jason to your prayer list! Blessings to all of you! Diane UPDATE: 6-2-07 Hello Everyone, It has been awhile since I have updated all of you on Sarah - I'm sorry! We have been enjoying her So much, having her home! We are still under construction, and we have all been VERY busy. Hopefully, soon we will be done and can settle down for awhile and relax. Sarah has been sick with a cold (it went to her lungs) this past week. She is FINALLY recovering from it. She has been on Xopenex and Tobi Nebs to help her breathe easier. We are hoping to get her back on her trach collar trials. She had been doing great with these (this is where she is off of the ventilator and breathing all on her own, with a bit of oxygen blowing in her trach). She was just starting 1 1/2 hours, twice a day, when she got sick, so we will start where we left off. She has been doing great with breathing off of the ventilator - we are SO excited for her to get off of the equipment - we can't wait!!! Sarah now weighs in at 14 lb. 2 oz. She is 24 1/2 inches long. She smiles a LOT, and likes to look at her hands and play with her mobile at times. Her legs are getting much stronger, finally kicking the side of her crib, and lifting them up in the air together. Her stomach is a nice size - she is no longer swallowing air! We are up to 18 hours of feeding in her stomach, with only 3 hours to go to totally switch over to her G-tube. Sarah almost has 8 teeth now! She has 6 teeth coming in on the top at the same time - it is amazing how wonderful she is dealing with her new teeth. She likes to chew on everything, including our fingers. Sarah is scheduled for a check up on June 19th. It will be a 1 day visit at the hospital (I know this is ALL I can handle - I don't want to leave her out of my sight for longer then this). If anyone can watch our children for the day - please let me know - thanks! Rik would be home in the evening, so it would only be for the day (about 6 am - 7 pm). If you know of any older children that could come over to our house to watch them, that would be fine, too. I was finally able to see Jeremy recently, as he came over for a quick visit to drop off a snowmobile. He looked great! He is jogging 3 miles a day, works out everyday, is going to college, and working hard at Sam's Club. He continues to try to increase his muscle strength. His memory seems great! He even remembered a kissing game that I used to play with him and his brothers when they were little (it was a game that I made up to make sure that my boys would love kisses when they got older). I continue to pray for a complete recovery, and that he will continue to be a mighty witness to the LORD with his life! Please join in prayer that his body will mend completely with NO residual side effects - thank you SO much! Thank you EVERYONE for your continued prayers for our family! GOD is SO faithful, and continues to keep us safe, and in his love! With the faith of a mustard seed - God will do amazing things in your life! Keep the prayers coming, for HE alone is FAITHFUL, and have a wonderful summer!!! Thank you for all of your prayers! Please forward this on to everyone that may be interested in praying for Sarah and for Jeremy - thanks! God Bless, Diane UPDATE: 5-7-07 Hello All, Sarah is doing well with her collar trials (off the ventilator). We are increasing to 1/2 hour, twice a day on 5/7/07. She is up to 10 hours of feedings in her stomach now, and we are planning on eliminating the G-J tube in June to just the G tube for feedings. She is not swallowing air anymore, so her girth measurements are great! She is starting to interact with her surroundings more, trying to reach for her mobils. We continue to help strengthen her neck muscles for head control, along with exercising the rest of her limbs. It is amazing after laying in a hospital for over a year, how your muscles atrophy. (Oh, for those of you who know my son, Jeremy, and have been praying for him as well - it was a year ago today that he was in the motorcycle accident - He is doing GREAT!) He is a living miracle of God! God is SO good - the doctors are so amazed every time he goes in for a check up. They can't believe he is doing so great! Please continue to pray for his body to be strengthened (he is still working out a lot, trying to increase muscle mass). Please continue to pray for Sarah's lungs to be strengthened, along with her heart/circulation. We will be re-checking her bladder in June to see if we can close up the incision that was made to help her bladder shrink back down to normal size. If she passes the bladder emptying test, then we can have her abdominal hernia repaired at the same time. Pray for good news! We continue to give the LORD complete credit in everything he has done for Sarah! She is doing SO much better at home! It is going to be very hard to bring her back to the hospital for a 2 day checkup. I am hoping to be able to be with her full time when she goes back in (pray that we find some sitters for the children during the day). If you know of anyone that could come over until Rik would get home from work, please let me know - thanks. Keep the prayers coming - THANKS SO MUCH (I really mean that)! Please pass the news on to others who are praying - thank you! Please continue to pray for our finances. We are still trying to juggle the balls... Much love in Christ, Diane UPDATE: 5-1-07 Sarah has had 3 times off of the ventilator (15 minutes at a time) over the past 2 days now - she passed with flying colors! Praise the LORD!!! Keep the prayers coming for continued healing within her lungs and for her saturation levels for oxygen increase throughout her body. God Bless, Diane UPDATE: 4-26-07 Next Monday, April 29th is a very big day for Sarah! We are going to try her on a trach collar for 15 minutes twice each day (if tolerated). This means that she will be OFF of the vent during these times. PLEASE PRAY FOR SARAH'S LUNGS TO BE STRENGTHENED AND THAT THESE TIMES CAN BE CONTINUED, AND LENGTHENED UNTIL SHE CAN BE OFF OF THE VENT COMPLETELY! THANKS!!!!! We also stopped Sarah's potassium and magnesium supplements a couple of days ago. The nutritionist seems to think that she should have enough in the Neocate that is added to the breast milk. They will re-check her blood levels next Monday as well. We will also be checking her iron levels in a couple of weeks. Please pray that these will continue to be normal (the Neocate has iron in it, so we are hoping that her body is using it properly, as her iron levels had been VERY high in the past). Sarah is now 13 lb. 6 oz. She has gained 6 ounces each week for the past 2 weeks. She will be up to 6 hours of G-tube (stomach) feedings tomorrow, and is doing VERY well with this. Thanks for all of your prayers and well wishes! God Bless, Diane UPDATE: 4-25-07 Here is a photo of Sarah taken on her brother, Luke's 4th birthday (4/24). She was having fun, looking at herself in the orange circle, which has a mirror on the front of it. God Bless, Diane UPDATE: 4-24-07 Hello ALL, Thank you SO much for all of your prayers!  Sarah came home on 3/27/07 and has been doing well.  We are up to 5 hours of feedings back in her stomach, 3 hours with no feedings and the rest in her J tube (so far).  Her swallowing air seems to have completely stopped once we came home - I can only attribute this to the LORD, as we haven't done anything different!  God is SO GOOD! At times she still holds her breath when pooping, but this has become less since she has been home.  Sometimes she doesn't cry at all, and surprises the nurse with a stool in her diaper.  It is during the bad ones that she cries so hard, and  holds her breath that we then have to bag her until she is done pooping.  We are praying that this ceases, in Jesus name! We continue to try to wean her from the ventilator.  She breathes on her own now with no rate, just some pressure support with each breath.  She seems to be requiring more oxygen since she has been home.  Please pray that we can go back to room air.   Today we are decreasing her peep support by 2 - pray that this goes well and that we can start ''collar'' time next week (this is where she is off the vent completely - they usually start for 15 minutes at a time, if possible). Updated prayers are:  Sarah needs help  with the elasticity in her lung tissues.  Her lungs have malaysia in them (she didn't seem to have this at birth), and I  believe it could have been caused by the constant over inflation when on the vent (this was done when we had a bad doctor.  Over inflation hasn't been an issue since the doctor was changed. To all the ''natural, healthy eating moms'', Do you have any suggestions to help her heart to heal, and become stronger, along with her lungs and the rest of her body?  I figure I could puree anything in a blender and give it in her G-tube in her stomach. Sarah now weighs 13 lbs. and is 16 months old.  She is full of smiles and loves to play with her mobile and watches her hands a lot.  She is definitely MORE interactive then when she was at the  hospital.  We are still working on head control and trying to help her muscles to become stronger.  She is SUCH a JOY to behold each day!  I am So thankful to the LORD for allowing us to have so much time with her! Please pray for our finances (our credit cards only go so far...)!  Some of Sarah's supplements and supplies are not covered by our  health insurance, or MA.  These total about $600. a month right  now...  We are  hoping to qualify for a waiver through the county, but so far - not yet... Thank you for your constant prayers and help for Sarah!  The prayers of the righteous are SO great, in Christ we can come boldly to our GOD and he answers ''yes, and amen"!  Keep the prayers coming! God Bless, Diane UPDATE: 4-9-07 Hello All, Sarah is doing well - thanks for the prayers! We are SO happy to have her home~! We are starting to try to transition her feedings from the J tube to the G tube. Please pray that this goes well! Please continue to pray for STRONG and HEALTHY lungs and heart - thanks! God Bless, Diane UPDATE: 3-28-07 Hello ALL! You are all such a blessing to our family - thank you for your prayers during this past year. Sarah FINALLY arrived HOME today - Praise the LORD! Please pray that she will adjust quickly to her new surroundings. She is requiring extra oxygen today, and her secretions are a little on the tan side. I am praying that she isn't coming down with something. It is hard to believe that she is sleeping in her room tonight - she is such a precious little child! Her brothers and sisters can't seem to get enough of her today, ALL have been holding, singing to her, touching her, creating cards for her, and giving her presents all day. God is SO good! It is nice to see so much love for her from her siblings. Sarah is such a blessing! It is wonderful to finally have her home with her family! We are now complete!!! We are praying for continued healing for Sarah - please join with us - thanks! God Bless, Diane UPDATE: 3-26-07 Hello Everyone! Praise the LORD! Sarah is coming home this coming Tuesday, March 27th!!!!! I have her room pretty much set up - I can't wait - I am SO excited! It has been a LONG year, with SO many ups and downs - more downs then ups at times. Looking back, I can see the Lord leading me, carrying me, and especially comforting me through the tears. With SO many of you praying for Sarah, and for Jeremy - I can see His hand on their lives, so many answered prayers. Because of your faithfulness to pray, I know that God will bless each of you! I know the Lord has awesome plans to strengthen and encourage each of you in your walk with Him. He is our Rock and our Deliverer! He is our Comforter and Healer! Remember to Trust in Him. He is our source and our strength. Sarah is now 12lb 7 oz. Yeah! Sarah has been swallowing air again so her abdomen is quite distended. The doctor had turned her air pressures up due to her floppiness in her lungs, and it didn't agree with her - so he turned it back down, but the bad results (intestines are FILLED with too much air/poop), and it will take time to get out of her system). Please pray for her muscles to be strengthened, and for her lung tissue to become strong and stay open. We still do not have a nurse for Thursdays 7am-7pm, and every other Sunday 7am-7pm. Please pray for nurses that love life and have the desire to help Sarah thrive. Please pray that the transition to home will be a smooth one - thanks! THANK YOU FOR ALL THE PRAYERS, AND WORDS OF ENCOURAGEMENT! God Bless, Diane UPDATE: 3-19-07 Hello All, Sarah has had 2 blue spells (quits breathing) during a bowel movement in the past 3 days. Please pray that they can figure out why she is holding her breath, and why it is so painful for her during this time. She has had crying episodes during bowel movements before, but this is different. They are checking to see if she might be having small seizures, as they don't know if this last one was - I guess it was different from the previous one. We are praying for the doctors, and nurses to provide excellent care in their diagnosis, and possible treatments for her. I believe it is all bowel related and trust the LORD in this area. Please pray for healing in this area! We seem to ''almost'' get her home and then something new happens. We are still scheduled to bring her home this coming Friday - I'll try to update you as I can - THANK YOU FOR ALL OF YOUR PRAYERS! We know that we could have a very short time with Sarah, and pray that this time can be spent at home with her family! Sarah is smiling a LOT and starting to interact more with mobiles, and toys. She is on c-pap now for over a week (this means that she is breathing on her own - no ventilator breaths). We are trying to wean her pressure support, and then try collar time (off the vent). They won't change anything now until at least 2 weeks after she is home. This gives our home nurses time to get to know her and she what her norm is. Continued prayers for strength in her lungs, heart, and for her development! THANKS for your prayers!!! God Bless, Diane UPDATE: 3-9-07 Hello to our praying families, Thank you for your prayers and encouraging words!  Sarah is doing well, on C-pap for 3 days straight.  She is between room air (21%) and 25% most of the time, and then start collar time.  We hope to start weaning her pressure support to allow for a true C-pap soon.  Her abdominal girth continues to act up periodically with stooling issues, but she doesn't seem to de-sat like she used to during a bowel movement.  Her infection in her lungs seems to be gone.  Her blood work came back negative for MRSA, which is great!  The doctors can't believe that she hasn't come down with something "permanent, or antibiotic resistant", since she has been in the hospital for the past year.  There is a LOT of hospital born germs! The past week, the nurses have penned her personality "the new Sarah", as she smiles, and tries to laugh a lot (I wish I could hear her, but with the trach, I can't), and she interacts more!  She continues to improve with holding her head, and has started to reach out more at things.  It is wonderful when I can catch her in one of her awake times.  When Sarah sleeps, she is pretty hard to wake up.  Sarah's supplements are costing about $300. a month, no insurance reimbursement - pray for our finances to improve so that we can continue to purchase these for her.  They seem to be helping her cells to learn to communicate (the company has done studies on T21 children (Downs syndrome), and other conditions with great results).  Praise the LORD for His healing touch on her life!  We continue to pray for healing onher whole body, in Jesus name!  Keep your prayers coming - the LORD is faithful! FYI - Jeremy (almost 20 yrs old) is doing great!  Continued prayer for his strength to improve, and any other healing that he needs.  Shanae's (5 yrs old daughter) bloodwork finally came back fine - no leukemia worries...  We are bringing her to a specialist for her swallowing/neck concerns, since the accident last Nov.06.  Pray for a complete recovery!  Other children are still complaining of back/neck pain. The house reconstruction/construction is coming along - Sarah's discharge will have to be pushed back another week - the weather slowed things down a bit.  Prayer needed for our finances and decisions with the house. Blessings to you all! Diane UPDATE: 2-23-07 Hello Everyone, Sarah is scheduled for discharge on March 15th. We are hoping that most of our nurses will hang in there until then. We are currently under heavy construction at our home, adding on/modifying for Sarah and her needs, and building a 2nd recording facility. It is presently unsafe for Sarah, or her nurses. We have refinanced, and are in need for our finances, especially each decision that is made towards getting the work done. We are hoping to be able to finish a lot of it ourselves, but time doesn't always seem to cooperate. We are under a time frame, as Sarah's last day at the hospital is March 15th (if Sarah is stable, and we have nurses, then Rik's health insurance won't pay for her to stay in the hospital, even if our home is unsafe for her). If our home is not ready, then the hospital is forced to place her in foster care. We are out of the Ronald McDonald house for good as of March 15th (if Sarah is discharged, or 4/1 at the latest). We are not within their 60 mile one-way guidelines (3 miles short), and they have accomodated to this date, but are unwilling to extend the arrangement any longer. In the future, we will not be able to stay at the Ronald McDonald home again, but will have to drive back/forth from our home, or find a hotel close by to house our 4 children (this gets pretty tough and expensive). We have been truly blessed this past year, and continue to pray for Sarah's health to improve and remain stable. I don't know what the future holds, but we are enjoying each day that we have with her. Life is So precious! Sarah is at 16 hours of C-pap now, and down to 6bpm for the other 8 hours at night. Every other day, we increase her C-pap hours by 1. She has lost weight in the past 2 months, so we are looking at increasing her calories. She is just at 11lb. now. She is currently sick, and is on antibiotics, so hopefully she bounces back soon. We are hoping that her abdominal issues are finally under control. She was started on 1ml. of pectin, along with the ginger tea, and this seems to keep things moving (just hopefully not too much). In the past, each time she is on antibiotics, her intestines ''stop'' moving, and her girth increases TOO large. She was just started on them yesterday. We are hoping that the pectin will keep things moving, even with the antibiotics on board. Thank you ALL for your continued faithfulness to pray!!! Any gifts, large, or small, are always welcomed! She is such a precious little girl, and we thank the Lord for being able to spend time with her! Blessings to ALL of you, Diane UPDATE: 2-15-07 Hi All, Sarah is doing well - she is on 12 hours of C-pap and we are weaning her rate down at night - she is at 6 bpm (breaths per minute) now. She was recently exposed to chicken pox - so she will now need to be confined for 21 days. She is still having trouble with bowel movements - her stools are very chalky, and formed - hard to pass... I don't know what is causing this... It doesn't seem to bother her, until she has to go - then she cries for a long time. We are almost scheduled for home nurses - pray for Godly nurses to care for her! Pray for continued healing for her lungs, heart, bladder, and intestines. THANK YOU for your faithfulness to pray!!!! Jeremy is doing GREAT!~ :) Blessings to all, Diane UPDATE: 1-28-07 Hello, Sarah is having difficulty breathing over the past few days. I am hoping that it is due to her cutting another tooth on the bottom. She was doing well before this time, on c-pap trials for 12 hours a day (this is her breathing without the machine taking any breaths for her). She had been on room air (21%) to 25%, but now she is up to 30%-40%. They did a culture, but nothing out of the ordinary is showing up yet. Her tummy is down a little, but still distended. The ginger tea is helping a lot though. Keep the prayers coming for healing within her body. She continues to grow, almost at 11 1/2 lbs. now. She has been sleeping on her right side too much and her head is miss-shaped a bit, so we are trying to make her sleep on the other side more. I don't know if she is a candidate for a helmet that helps this condition, but I am hoping for a consult, if the Lord doesn't take care of it beforehand. :) He is faithful, and worthy to be praised!!! God's Blessings to you all, Diane UPDATE: 1-11-07 Hello, Sorry, I haven't updated for awhile.  Life gets crazy at times.  Sarah is not home yet.  We are still looking for nurses for care at  home.  Sarah is recovering from some type of bacteria in her lungs again.  She is now over 11 lbs.  We are working on head control, and exercising legs and arms, as usual.  The ginger tea and probiotics are working well to help with her digestion, especially when she has been on antibiotics. Praise the LORD for his precious gifts of life!  We are enjoying every minute we have with her.  Keep the prayers coming for stronger lungs and heart, so we can continue to wean her off of the vent. God Bless, Diane UPDATE: 12-27-06 Hi, Here is a photo of when Sarah was Very ill. She is recovering nicely now - Praise the LORD! We are hoping to bring her home after New Years! Pray for GREAT nursing staff, and for continued healing on Sarah's lungs, heart, digestive system, etc. Thank you ALL for all of your prayers, and continued support for our family! God Bless, Diane UPDATE: 12-15-06 Hello All, Sarah has caught ''something" and is having great difficulty in her breathing.     They have set her ventilator up quite a bit to give her relief and rest.  We are waiting for the cultures to grow out to see if we can tell what it is, but atleast they are starting some antibiotics for the bronchial areas (hopefully, it is something the antibiotics will treat).  It would be better to be bacterial, then a virus, as we can treat it then.  Please continue to cover her in prayer!  Sarah just turned "1" on 12/12/06.  She weighs 10 1/2 lbs.  It is hard to believe that our precious gift of life has been with us for a year already. The days are filled with praise, and yet a LOT of stress too!  I continually have to give it ALL to the LORD, as I am sinking at times...  So much going on with the family, accidents, health issues, finances, etc.  It is hard to juggle it all. Jeremy, is having problems with the cranial fluid draining properly, and also he is having some very sharp pains in his back, between his shoulder blades. Please continue to cover him in prayer for healing too! Blessings to ALL of you throughout the coming year!  thank you for your faithfulness to pray and for your words of encouragement.  Your emails always seem to come just at the right time when I need to hear from the LORD.  Keep the prayers coming - God is SO faithful!!!  I truly believe HE is the one carrying us right now. Diane UPDATE: 12-15-06 Dear Warriors, Diane called in route to the hospital with Sarah Rose. She has caught something and is having a difficult time breathing. Please cover her in prayer for healing. Also, her brother Jeremy, that was in the motorcycle accident a while back, is having problems with his fluids draining from his brain and will need a shunt if it doesn't correct itself soon. Be in prayer for this family. UPDATE: 12-2-06 Hello all, Sarah seems to be doing better today (according to the nurse over the phone). I have found that they can say she sounds great, and then when I have arrived at the hospital, she is NOT. So... I am not sure. Yesterday, she was very coarse sounding in her lungs (hard to clear when suctioned), white, nasal drainage (usually a virus if white they say). She was drooling a lot yesterday, so I don't know if her tooth is still coming in, or if she is getting a second one. We have started Sarah on some Ginger tea in hopes of helping her digestion and intestinal movements. Please pray that the amount they are allowing is going to be helpful. I am not sure on a discharge date, as I have heard several. The insurance company wants to push her out, even if she is not well (she said this over the phone - stable, or not she is going home on the 8th SHE WAS VERY RUDE). The nursing agency is being pushed by the insurance and case manager at the hospital. The nursing agency told me they don't want to lose referrals from the hospital, so they are trying to meet the date the insurance company wants, even if this means pulling nurses from other families, like the last nursing agency was going to do. I don't feel this is right to leave other families without nursing care, just so the insurance company can save some money. It is safer all the way around, if they would wait until more nurses were hired and properly trained. My doctor is in the dark to all of this "background goings on" (he said he is not "feeling the heat"). We don't have enough nurses signed up yet to make the date "they" have picked... The agency was going to guarantee nurses by Jan. 2nd, yet were trying for Dec. 18th. The insurance was pushing for next Friday, the 8th. It is a sad state of affairs when everything is driven by the "dollar", and not the care of human life! I continue to pray for Sarah's life to make a difference in MANY and for healing for her body! Family update: We are all seeking medical care - all neck, or mid-back, or low-back injuries. None are feeling any better from the accidents yet... The furnace should be done on Monday, I believe. :) Praise the LORD for heat, even if it is not paid for yet. God Bless, Diane UPDATE: 11-30-06 Hello, Sarah is wheezing today, so they stopped her Cpap trial.  She was  started on Xopenex and some type of steroid (to be given for the next 4  days).  Please pray for her lungs to be strengthened. Also, please  pray for  good nurses to be hired, to  prepare for her  homecoming.  Thank you for ALL your continued prayers! God Bless, Diane UPDATE: 11-22-06 Hello, I have recently placed Sarah on a product called:  Ambrotose, by Mannatech.  The cost is about $115.00 a month.  This product was referred to me by another T18 family, as well as a couple of other families that have read Sarah's story.  It is an amazing product, and already we have begun to see much improvement in Sarah's immune system within her blood work tests. Kelly, another T18 mom, is working with the company to try and have them do a study on Ambrotose and Trisomy 18 children.  I guess they have done other research on other types of health conditions/syndromes and have shown MUCH benefit, and results with these other children.  If we are excepted, then the product will be given to each of our families during the study.  Right now, they are doing a study with a different type of condition, so we are hoping they will do a study on Trisomy 18 children afterwards.  We are praying that they will take all of the T18 families on in a study so we will be able to obtain the product for free during the study.  Please join us in prayer! IF there are any families that would like to contribute to the cost of Sarah's Ambrotose, please have them donate to her  benefit fund.  Any gifts received will be used for her Ambrotose, goat's milk, fish oil, olive oil, and diapers, etc.. Thank you for caring about Sarah and our family!  May the LORD richly bless you and your  families throughout the coming year! God Bless, Diane UPDATE: 11-21-06 Hello All prayer warriors, Sarah is still hospitalized. Her C-pap trials are going well (this is where they turn the ventilator breaths off and she breathes on her own). She is up to 3 hours x 2 for a total of 6 hours a day now. We are working towards a 12 hour shift from 8 am to 8 pm, and then resting at night. She actually seems to be doing well with her breathing, even though her tummy is huge. Her abdominal girth is still TOO large - please pray that her intestines will start to move in a healthy way, and that this air swallowing will cease. Her weight is about 10 lb. 3 oz., and she has her first tooth on the bottom (it is so cute). We continue to work with helping her to increase her muscle tone, as laying around doesn't help for muscle development. Home front news: Rik was in an automobile accident on 11/6, and I was in an automobile accident on 11/15. All of us are trying to recover from whiplash/back injuries. Rik, myself, and Nathan seem to have gotten it the worst. Angela's arm and lower back seem to be doing better, Shanae's upper back, and Luke's upper back seem to be much better already. (It is wonderful how quick children recover - God made our bodies so amazing). We are still without heat at home. Our furnace was removed this past Friday, and we are hoping to get a furnace installed after Thanksgiving week. We lost our nursing agency today, they removed themselves from her care, as they were not able to find nurses to staff for her in our home. So... we are now going to check out some other nursing agencies. We do not have a discharge date again... Please pray that we find a good agency, and wonderful nurses to care for Sarah in our home. Please pray for Sarah's lungs to heal, for her heart to continue to shrink down to normal and find her sinus rhythm again, for her intestines to work properly and that she gets the proper nourishment from her food! We serve a mighty God!!!! Please share her story with other believers. God is faithful and we believe in the power of prayer. ALL PRAYERS ARE APPRECIATED! Diane Stirling UPDATE: 11-8-06 Hello all, Sarah is still having trouble swallowing too much air into her belly.  She is having trouble passing this air out the other end as well.  They continue to stop and start her feedings as her abdominal girth increases.  Any natural suggestions? (the doctors only suggest drugs that help with motility issues and these all have side effects).  She is still on antibiotics, but I believe her lungs to be improving.  Sarah has her FIRST tooth on the bottom!  She is now over 10 lbs and continues to gain - praise the LORD!  The combination of breast milk and goats milk seems to be helping her body to grow.  She is also on olive oil and fish oil.  Homefront update - no furnace in our home yet, and Rik crashed our new jetta this past Monday.  I am SO thankful that he is alright, just the car might be totaled, we don't know yet.  We continue to praise the LOrd through it all - HE IS IN CONTROL AND IS CARRYING US THROUGH THESE HARD TIMES! Jeremy is doing great - he asks for prayer for his speech and muscle strength, and career decisions. Blessings to you all!  Keep the prayers coming - thanks! Diane UPDATE: 10-30-06 Update from today! Sarah stopped breathing last night and is currently diagnosed with pneumonia. She is on antibiotics and they stopped her feedings again. Please pray for her health and that the antibiotics will work! One amazing praise report in regards to the furnace going out was that Sarah would have gone home and only been home 2 days before the pneumonia set in. They would have lost their place at the Ronald McDonald House and would have been put back on the waiting list while Sarah was recovering. So, THANK YOU Jesus that the furnace went out when it did so they can continue on at the Ronald McDonald House. Thank you for praying! April UPDATE: 10-29-06 Hello All, Well, Sarah was scheduled to come home this past Thursday 10/26/06. She is STILL at the hospital now, as our furnace went out. I had gone home on the 23rd to prepare for her arrival and found the furnace not working. We have now been told that we need a new furance, as this one is too rusted out to do any more repairs. SO... We were not prepared for this additional burden on our family. Sarah will not be able to come home for 3-4 weeks now. She is currently stable. Her oxygen needs are usually 23% (21% is room air). She has grown to 9 lb. 10 oz. My milk supply is almost gone, so we have been adding goat's milk concentrate to her breast milk. She seems to be gaining weight well with this. If there are any nursing moms that would LOVE to donate some breast milk, that would be GREAT! Sarah consumes 21 oz. a day! She finally was fitted for hearing aids (the left one fits well - not the right one). When it is turned on she is very interactive, so it seems to be working! We continue to pray that whatever caused this hearing loss will be gone and that her hearing will return to normal. Her bladder is finally shrinking back to normal, so we are looking at around a month for a re-check to see if we can close up the hole below her belly button and have her return to normal peeing. Please pray for a complete healing on her bladder. We continue to pray for muscle strength and coordination, healing on her heart, lungs, trachea, liver, bladder, stomach kidneys, and for normal brain development, along with bone development within her body. Thank you for all of your continued prayers for Sarah (and for Jeremy - he is doing great! He continues to work at regaining his strength). I am sorry if you received this email in error. Please let me know if you would NOT like to receive future updates on Sarah - thanks! God Bless, Diane UPDATE: 10-14-06 Hello All, I am sorry that I haven't updated everyone on Sarah lately. I start to think that everyone is too busy with their lives to be checking in on "how Sarah is doing anymore" - sorry. It wasn't until I received a few emails that I realized that some people do still think about her and pray for her often - THANK YOU! Sarah was supposed to come home on the 12th, but we didn't have nursing staff available yet. We are hoping to bring her home now towards the end of the month, sometime after the 26th. Sarah is currently on room air and her skin color is excellent (no more jaundice). When she is awake, she is much more alert - she seems to have her days and nights still mixed up though. When she sleeps she is REALLY OUT and I can't seem to wake her. We are working on her head control and exercising her arms, legs and practicing on rolling her back and forth. She even smiles at times. :) She is now 8 1/2 pounds - so little, yet SO big from 10 months ago! Praise the LORD for the past 10 months! She is such a special little girl - we are SO blessed to have the time that we do with her and continue to pray for many more months/years! Prayers: Sarah will be having her g/j tube replaced next week - pray that this goes well. We continue to pray for healing on her lungs, heart, bladder, etc. and for normal brain development. Also, please pray for strength for our family, for our finances (we are looking at expanding Rik's business capabilities in hopes of having him home more and to accommodate for Sarah), for continued healing for Jeremy after his accident (he is doing great!), and for our 21 year old son, Joshua (he is in China), to continue to seek the LORD's leading for his life, and for protection, strength and comfort. Thank you ALL! Praise the LORD for He is worthy to be praised! Sing shouts of JOY to our savior the KING!!! God Bless, Diane UPDATE: 9-29-06 Hello, Just a quick update on Sarah: She seems to be getting over the bacteria infection in her lungs. She is still struggling with an infection in her left eye. Sarah weight is down (she lost over a pound), so we started her on some goats milk besides the breast milk, olive oil, and fish oil. We are hoping to bring her home on Oct. 12th. We are hoping that our home nurses will be set up by then. Please pray for continued healing for her heart, lungs, and strength for her whole body - thank you SO much!!! Jeremy: miracle's never cease!!! He is back to work, jogging, biking to work (he isn't allowed to drive yet until he is seizure free for 6 months) and working out - Praise the LORD! Pray for continued healing, and strength for him too! God Bless, Diane UPDATE: 9-06-06 Hello, Please forward to everyone willing to pray! New update: We have been weaning Sarah off of the ventilator onto Cpap. Sarah started having some apnea spells this past weekend (4 in 4 hours while on Cpap), so they have stopped the c-pap trials and have placed her back on her ventilator settings of 6-10 bpm. She does continue to breathe 30-50 above this rate which is wonderful! They have taken a CT scan of her head, and a lot of blood work this morning - no results are in yet. We are praying that these apnea episodes are a mistake on the equipment, and not a new condition for her. If it is not, we pray that it will resolve itself and quickly, so that we can continue to wean her off of the ventilator - sooner, then later. Sarah continues to try to adapt to her new trach which is a bit longer then her previous one. She is needing this longer one for a few weeks hopefully not longer), as they are waiting for some granulation tissue to resolve itself, or they might have to go in and laser it off in her lungs. I guess this happened from using a too soft trach, instead of a firmer one. More modern science... We continue to pray for the doctors and nurses that are involved with Sarah's care - much wisdom, knowledge, and LOVE! God reigns! God bless, Diane UPDATE: 8-28-06 Hello Everyone, (please forward this email on to all who are willing to pray for Sarah) Sarah is over 9 lbs. now! It is hard to imagine that I still could have given birth to her at this point (she is almost 9 months old). She has grown a lot for her little size. She loves to suck on her little fingers. Sarah had developed an oral aversion due to intubation/extubation, so I have been working with her doing oral stimulation/exercises in hopes of her nursing, or bottling later. She finally allows my fingers in her mouth! Sarah is recovering well from her pneumonia. She is back to breathing sprints, or trials, weaning her from the ventilator. She is doing well with these, and is currently on room air (21%). She fluctuates between 21-30%. The doctor is hoping by Monday to have her on C-pap. Praise God!!! Sarah seems to be having trouble with a LOT of air in her intestines. She is quite distended in her abdominal area. Please pray for much wisdom to figure out how to eliminate this problem. We don't want any stitches/incisions busting loose. Prayer requests: Sarah will be able to continue to wean off of the ventilator, heart/lungs will be strengthened, and her airways will enlarge and be strong so that she will be able to breathe unassisted. Sarah's intestines will continue to heal and work properly, along with continued healing for her bladder. *Does anyone have a battery operated, infant swing available to use, or purchase for Sarah? She loves the swing they have at the hospital (it is battery operated, makes music, and has lights and stuff). The doctors are hoping to schedule a bronco study, along with looking in her ear canals soon. She will have to be sedated for this. We are hoping that if she needs additional help with her airways, or hearing, that we can take care of it while she is still in the hospital. We are hoping to bring her home before the ''bug season'' starts! We are continually praising the LORD for her life and for ALL that He has done and continues to do! Psalm 118:1 O give thanks unto the LORD; for he is good; because his mercy endureth forever. Thank you everyone for your continued prayer support! God Bless, Diane p.s. Jeremy is doing GREAT! He went back to work this past week! Praise the LORD for his healing touch on Jeremy's life! Pray for continued healing! I am praying for a complete recovery - I know God is faithful! UPDATE: 8-17-06 Hello All, I just received a call from Sarah's doctor.  Sarah has required a significant amount of oxygen through the night.  They have increased her pressure support on the ventilator and her oxygen needs (we had just started to wean her this past week, as she had been doing SO well with breathing).  Her xrays taken this morning show that she has pneumonia. Also, her bladder site has an infection brewing, so they are placing her on 2 heavy antibiotics this morning.  Please pray for a quick healing! Please forward this on to ALL prayer warriors - thank you SO much!!!  God is SO good and hears our prayers! God Bless, Diane UPDATE: 8-7-06 Please pray: Sarah has a large hole in her right lung that hasn't closed yet.  This happened unfortunately during surgery.  Sarah's intestines are again working, so they have started her slowly back on food.  Her breathing is MUCH better too!  Praise GOD!!! Please pray for healing within her body, and for protection against any infections. Also, her right eye seems to have staph germs still - pray for this to finally be gone. Thank you ALL! Diane UPDATE: 8-2-06 10:00PM: Diane called and Sarah Rose is in PICU. She said the surgery went well. She asks that prayers be focused on her intestines waking quickly and protection against infections. She will send in a full update as soon as she can. We both thank you for your prayers and give God glory....Elizabeth Earlier: Diane just called from the hospital. Sarah Rose went into surgery at 12:30 today to get her intestines moved out of her lung area and back into place. They had just begun the major part of the surgery at 4:00 and did not know how long she would be in surgery. She asked that everyone please be in prayer for Sarah Rose that the surgery goes well and that her intestines will wake up quickly. I will update you as soon as there is more news. Elizabeth UPDATE: 7-26-06 No surgery for Sarah until next Wednesday - 8/2/06.  Her bladder infection seems to be gone - pray that it remains that way.  She was on room air, but has required some oxygen the past few evenings - they can't seem to get her to settle in at night.  I don't know if it is the intestines in her lung area that are bothering her, or what - it is only a guess at this point. Sarah smiled at me today - it was SO wonderful!  I have learned to NOT even take a smile from my children for granted - they are ALL so precious! Please pray for guidance, wisdom, and a complete recovery - thanks! God Bless, Diane UPDATE: 7-19-06 UPdates:  Unfortunately, our son, Josh did not come home from China.  He couldn't get a visa to leave and be able to return back to China for his work, and will have to wait until September.  Jeremy is HOME from the  hospital!!!  His benefit on Sunday went well, - a lot of his friends/co-workers, and family showed up to show their support - praise the LORD!  He continues to improve each day, working out at home for PT now, and has OT and speech at the hospital a few times each week.  He is hoping to be able to drive within 2 months, and then head back to work and hopefully sign up for college this fall.  God's grace is amazing and His healing power awesome!!!!! Sarah - she is having more trouble breathing, requiring Oxygen at times, we believe due to her colon/intestines up into her heart/lung area, through the hernia in her diaphragm.  Her bladder has an infection, which doesn't help with the bladder size any - she is having major trouble emptying her bladder - she retains 10x the amount for someone her age (her bladder has stretched to a very HUGE size - we don't know what the original size was).  We are hoping for a combined surgery to repair everything at one time (Major surgery) and hopefully get her home before the winter germ season starts.  We are asking again for CONSTANT prayers for healing, guidance, wisdom for the doctors, surgeons, nurses, and family!  Thank you for ALL OF YOUR PRAYER SUPPORT! Blessings to EVERYONE, Diane UPDATE: 7-10-06 Sarah needs prayer - she has developed a hernia in her diaphragm, and her colon/intestines are moving through, or in/out through this hole.  It sounds like it is due to where the pacemaker wires go through her abdominal wall towards her heart in the front, by the sternum.  We are told at this time that surgery will not be done.  We are praying that it is not being done at this time because it is unnecessary - we are waiting to talk with the specialists involved.  Please pray for the truth to be made known and for a complete healing in this area. Sarah's hemoglobin is up within normal limits - PRAISE THE LORD!  What a wonderful God we serve! Continued prayers - lungs, heart, trachea area, her whole body to function well and be strengthened. Sarah is scheduled to come home on the 13th - this coming week!  Pray for a smooth transition! Some modifications need to be done to our home to be able to help assist Sarah, along with equipment requirements for her. We are asking for MUCH prayer for our financial situation, and guidance in our decision making process for our family. God Bless, Diane UPDATE: 6-28-06 Hello ALL, Thank you for ALL of your prayers, and faithfulness to continue to pray for Jeremy and for Sarah!  God is SO gracious, loving, forgiving, merciful, and JUST GREAT! I believe it is the prayers of all of YOU that have made this possible - you are ALL his faithful servants when you have prayed for them - we can't thank you enough!!!!! Jeremy had his skull plate replaced yesterday.  The surgery went very well.  We are hoping that the bandages will be able to be removed within a few days.  The staples will be in for a few weeks. He is back on 7th floor to start rehab again tomorrow.  We are praying that the swelling will go down in his head, and face quickly and that everything will heal perfectly!  They are hoping to remove the drainage tube tomorrow from his skull.  His left side continues to improve and he lifted, or bent his left arm for me twice tonight! Each day, I see God's handiwork and healing touch on his precious life!  He is talking about becoming a nurse, or physical therapist, or respitory therapist - he still has a deep desire to help people, and now he understands the field "first hand". Sarah's homecoming is still set for the 13th of July.  Please pray for protection against ALL infections, as there are 2 children with MRSA on her floor (these are germs that are not killed by antibiotics). My son, Josh (21 yrs old) will be able to come home from China for 3 weeks (I haven't seen him in 2 years), and will be arriving the SAME day!!!  Praise the LORD!  He will be at the Benefit that is being held for Jeremy on July 16th, for all who would like to see him! The benefit is at the Osseo American Legion, from 4pm - 8pm, on Sunday, July 16th.  A dinner, bake sale, and silent auction (5-7:30pm)is scheduled for EVERYONE who would like to attend to show their support. Sarah's hemoglobin is at 9.5, up from 9.4.  We are praising even the little steps she is making!  Her bilirubin is down to 4.3 - she almost looks like thefair skinned little girl she is supposed to be. :)  She is still over the 8lb mark - she even has chubby little legs now.  We continue to pray for her lungs to strengthen, her trachea to become stronger, heart, liver, abdominal walls - each to be healed.  As her hemoglobin continues to improve, we are hoping to be able to wean her back to C-pap trials, and off the ventilator as quickly as we can.  We continue to reject the extra 18th chromosome and demand it to be null and void in her precious body in Jesus mighty name. God's favor to you all!, Diane UPDATE: 6-26-06 Hello all - pass along - thanks!, Sarah is getting closer to 8 1/2 lbs. now - WOW!  We are waiting for her hemoglobin to rise to normal limits, as it is still low.  Her hemoglobin will be rechecked on Monday - please pray for continued improvement!  She is still on epoetin (a drug that helps the body make blood).  We have decided to post-pone her home-coming, due to training that is needed to prepare for her care, we are trying to get our house in order, and Jeremy is having surgery this coming week.  Her home-coming is scheduled for July 13th - pray that she continues to improve and NO new infections, or health concerns.  We continue to pray for healing for her entire body (specific areas - heart, lungs, airways to strengthen and grow larger in diameter, stomach muscles to pull back together, as they are separated due to large amounts of air in her abdominal area,  liver, eye lashes in her right eye need to lengthen as they are growing inward, muscle tone to improve and blood). Jeremy continues to improve each day!  Praise the LORD!!!  He is walking with little assistance, is "cleared by the doctors" to eat almost anything now (he has been waiting for a t-bone steak - his dad owes him).  His speech continues to improve each time I see him - much clearer and normal volumes.  His therapy is going well, according to Resa, his stepmom, and dad, Kevin.  Jeremy's left side still needs to ''wake up more'' and return to normal function, and much strengthening is needed overall.  I was SO excited to see him walk, with little help to the bathroom the other night - what an amazing miracle before my eyes (especially thinking back only a week, or two ago)!  O give thanks unto the LORD; for he is good; for his mercy endureth forever Psalm 136:1. Jeremy is scheduled to have his bone flap replaced in his skull on Monday - PLEASE pray for the doctors and for a complete recovery for Jeremy.  They said that it can be a rough 3 days afterwards - I am praying that he will be fine and back to his therapy quickly! God's blessings to you all - Behold, how good and how pleasant it is for brethren to dwell together in unity!  Our  family wishes to thank ALL of you for your united effort to continue to pray for Sarah and for Jeremy!  The LORD DOES hear our prayers and the answers are "yes and amen"!  God is SO GOOD!!! Much love in Christ, Diane UPDATE: 6-21-06 Hello, Please pass this on, as I don't have anyones emails with me, as I am not at home. Sarah is scheduled to come home in a week.  She will still be on a ventilator - no weaning yet.  Her hemoglobin is up to 9.4 - give praise to the Lord for this!  She still has a ways to go, but at least she is on her way.  Please pray for much wisdom, knowledge, and peace about her returning home with everything that is involved with this move.  Pray for good home nurses!!!  Item we could use - funding for a medical kid cart.  Does anyone have an INFANT CARSEAT that they are no longer using that I could use for Sarah? Jeremy continues to improve each day - praise the LORD!  He continues to improve with his speech, movement with his right side, and his left side is starting to wake up a bit.  He has been walking with assistance, as his left side is not working right yet.  He continues to improve with eating as well (no t-bone steaks yet).  I usually see Jeremy in the evening when he is quite tired after all of his therapy.  He still parrots me quite a bit, repeats things a lot, yet each evening is ALWAYS better then the previous visit.  At times, he talks a little to fast, and low, so I have to ask him to slow down, or speak louder.  He seems to remember almost everything that is asked of him.  Math, and time (clock), are a couple of areas he needs improvement with.  Pray for continued healing in his brain, for continued strength within his whole body, and for the Lord's peace to fill his spirit in all that is required for him to do!  Pray for guidance for the doctors when they place his bone flap back in place.  Jeremy decided to shave his face clean yesterday - it was a surprise - he looks so young without that hair!  We continue to pray for a complete recovery for Jeremy and for Sarah as well!  God is good - we give Him ALL the glory! Trust in the Lord with ALL your heart! Diane UPDATE: 6-16-06 6 mo. picture of Sarah Rose above. UPDATE: 6-10-06 Sarah is doing well even with her low blood level. No c-pap trials yet... She was given her first dose of Epoetin today to help her body produce hemoglobin. This will be given 3x week until her hemoglobin improves, then down to 1x week. Please pray that she will not experience any side effects from it! Sarah FINALLY reached the 8lb. mark (no water weight this time). YEAH! Praise the LORD!!! Sarah has some eye lashes that are growing inwards - pray that these will turn around and grow the proper way they were intended to be! Rik and I will be taking Trach classes soon, if we are able to find someone to assist with childcare for a whole day - preferrably on a Friday when Rik is home. We are also thinking about replacing Sarah's g-tube with a mic-button in 1-2 months. Please pray that ALL nursing care will be set up well in advance and that the care provided will be EXCELLENT in God's sight! God is SO good and worthy to be praised! We are homebound now for a little bit... We have experienced a loss at home (one of our female collies had 16 pups inside her womb - her uterus was twisted - an emergency c-section was done - most of the pups were lost). Please pray for the remaining puppies and the mom - thanks! In all things - let us praise the LORD, for He gives and He takes away - we continue to trust HIM with our lives! God Bless, Diane UPDATE: 6-7-06 Hello All Prayer Warriors - (pass this on to everyone willing to pray), Wonderful Praises continue!!!  Jeremy's feeding tube was removed from his nose this morning.  He is continuing to improve each day! Jeremy is eating soft foods, and we are praying that this will continue.  His right side is showing signs of improvement, better coordination and control each day!  He was able to squeeze with his left hand slightly, and move his leg at the knee, 3 times today after the therapist tightened his hamstring to cause discomfort (this is the first time).  He has been talking somewhat over the past few days, sometimes very clearly, while other times I need to listen more closely, to understand him.  At times, sentences, and other times "yes and no" answers.  He remembers MANY things, if not most of what we talk about!  He has been approved to go up to the 7th floor of North Memorial to start rehabilitation, which is EXCELLENT news!  They had strict criteria that he had to meet.  The doctors are hoping to replace his bone flap on his skull (hopefully) next week.  If not, this will not stop the therapy - he will only need to wear a helmet.  His spirit at times seems down, and he has stated that he doesn't want to be where he is, but realizes that he is the one that has to work hard to improve, that no one can do it for him.  Please pray for spiritual protection, and encouragement!  He seems to enjoy visitors, yet gets tired easily, so please keep visits short.  Any helpful stories of the past - please share with him as to "stir his brain cells/memory". He grabbed my hand twice, and kissed it (I started to cry).  He also said, "I love you mom".  It is difficult to see him struggle, yet I sing praises in my heart to our wonderful God and Savior for Jeremy's continued healing!  I continue to pray for a complete healing within his body!  I know the Lord has awesome plans for Jeremy's life and that he will continue to be a mighty witness for Him. Sarah's update:  Sarah's hemoglobin is VERY low.  They don't want to give her another blood transfusion as her iron and ferritin levels are VERY HIGH, at toxic levels.  If they give her additional blood this will only increase these levels.  Please pray that her body will make blood quickly so that a transfusion is not necessary.  I pray that somehow this excess iron can be eliminated (the body doesn't have a way of getting rid of excess iron, only by blood letting, or a drug that takes over a year to work).  They have stopped her C-pap trials for now, as she is NOT handling it well, since her hemoglobin is low.  Hopefully, this period of time will be short!  Sarah now weighs 7.8 lbs.  Her previous 8 lb weight included a little bit of excess fluid in her belly. She is still having a problem with too much air being pumped into her stomach from the vent, prayers to relieve this would be great! It has been an amazing journey for me through having 2 children in 2 different hospitals, trying to take care of 4 young children, living between our home and the Ronald Mcdonald house, handling all of the daily life ''stuff''. At times, I don't handle this very well.  I recently read this thought and it spoke to my heart: "The spirit of the world must be cleansed from the heart of every believer, so that every believer can carry My Spirit to the world. Be holy because I am holy."  So many ''things'' that were important, or seemed important before to me, no longer are.  I believe the Lord continues to work on our family to purge us, and draw us closer to His ways, and His love.  He is faithful, holy, merciful, and just and SO loving and patient! Thank you for your faithfulness to pray and for any gifts of love to help with Sarah and Jeremy's care!  They are very much needed and appreciated!  Keep the prayers coming! Anyone interested in providing care for our children for a day, afternoon, etc., please let me know (anything helps to be able to go from hospital to hospital as Rik is working).   God bless, Diane PLEASE NOTE: Hello, For future updates on Jeremy, please visit his website that his Aunt is updating at: www.caringbridge.org/visit/jeremymiller - thanks!  It is too hard for me to keep up with everything going on with Jeremy and Sarah as well.  I don't have all the details when it comes to his condition.  What an awesome God we serve!!!  Here is the latest that I received on Jeremy: TUESDAY, JUNE 06, 2006 03:57 PM, CDT  Great News!! Jeremy will be admitted to the 7th floor tomorrow morning! North Memorial is classified as #1 for Trauma and Therapy so this is great news! Jeremy will be in a double room but initially will not have a roommate, so will have the room all to himself. He will be a lot more active on the 7th floor and receive 3 hours of therapy per day. They have taken the food tube out and Jeremy is eating on his own. He had breakfast this morning and at lunch basically fed himself. Jeremy stood up today with assistance! He got dizzy and was a bit wobbly, which is understandable, he hasn't stood up in 4 weeks. He also was helped into the comode. His left side is getting better, his squeeze with his left hand is much stronger. The other day the nurse walked in and saw Jeremy with his right arm, pulling himself up on the left siderail (working out), and he told the nurse "it's 100% up to me!" He was tested with questions like; Is fire cold?, Does the sun shine at night? etc. and he passed them all. When he was asked does 50 cents equal 5 dimes, he said no. That was the only one he got wrong. The Neurosurgeon who initially saw Jeremy a few weeks ago in the ICU was up to see his progress. He was quite shocked. He told Kevin, while shaking his head, who would have known!! Everyday Jeremy is making so much progress, everyone is amazed. We are so happy and proud! UPDATE: 6-2-06 Hello, Sorry I haven't updated lately.  It has been an amazing weekend!  Our 4 year old daugther, Shanae, ended up visiting the Brainerd Hospital after throwing up for 3 days straight (she ate honeysuckles that cause a laxative and vomiting effect).  THEN I received a call from my mom and dad that my sister, Linda, had to go to the hospital as she ulcerated her eye and might loose her sight, and that my brother, Paul, was in an auto accident with a pheasant crashing through his windshield.  He is doing well - the bird did not make it though (it gives a new meaning to the term "pheasant under glass", my mom said).  THEN - today, Luke decided to visit the emergency room at Mpls. Children's and get 11 stitches in his forehead (he was hurt at the hospital in the sibling play area).  I am definitely feeling like JOB - yet I will forever praise His name through it all!!!! Great News! Kevin said the therapist worked with Jeremy this morning (6/1). She held up cards that read, move your right arm, move your right leg, move your head etc., and he did all of it! She asked him what his last name is, he said Miller (he has a type of voice covering on his trach -this is the first word he has spoken - I wish I had been there)!  I visited him this evening - he wasn't as responsive, yet I was excited to hear about his earlier activities.  Jeremy seems to have a restless right arm and leg most of the time.  At times he seems to be able to move it productively while I am there.  He seems to follow well with his eyes most of the time.  His left side is still unresponsive, and hopefully will "wake up" when the brain swelling goes down.  The doctors are hoping to replace his right skull flap in a few weeks (originally they were thinking 6-8 weeks).  They are hoping to see if he can swallow soon, and will then remove the trach. We are looking at options for long term therapy for him.  Pray for guidance in this area! Continue to pray for the brain swelling, and bruising to cease and that his brain will heal completely!  Also -that any seizure activity will not return.  Sarah seems to be doing well - praise God!  Sarah's hemoglobin is getting low.  They did a blood check to see if she is trying to make her own blood.  If not, she will need another transfusion, which would not be good in the long term.  Her test showed that she is trying to make blood, so we are praying that her body will make it quick enough as to not need another transfusion.  Sarah continues to gain weight - slow yet steady.  She is continually tested each day on the Cpap in hopes of weaning her off of the ventilator.  We continue to praise the Lord in ALL things! Thank you for all of your prayers! Diane  UPDATE: 5-28-06 Hello, Jeremy is off of the respirator and so far is doing well.  Jeremy's eyes are more centered today, which is good.  He is having seizure activity - please continue to pray that this will CEASE!  His temperature is finally down.  He is antibiotics for the blood infection.  The coma drug is finally completely out of his system, so now his body will be able to start working better.  We continue to pray for his brain swelling to decrease and that there will be NO residual damage!  Also, pray for his left clavicle and T5, T7, and T8 vertebrae that are fractured to be completely healed! is now 8.1 lbs. - PRAISE THE LORD!  She continues to do her cpap trials each day!  Pray for her lungs to be strengthened, that she will not require any assistance. Rik and I are SO thankful for each and everyone that takes the time to pray for our children! God bless you all! Diane UPDATE: 5-26-06 Hello, Jeremy still has a fever of 103-104, and is still in a coma.  The coma drug is almost out of his system now.  He has not done much of anything all day, probably due to the fever (we hope).  His blood infection is back - I believe that it NEVER left - they just stopped the antibiotics TOO SOON!  This seems to be the common problem with hospitals/doctors - they are NOT proactive, just reactive.  The did not do a blood culture to check to see if the bacteria was gone from the first infection, before stopping the antibiotic.  Please pray that Jeremy's infection gets under control IMMEDIATELY and that his temperature goes back to normal.  They have increased his seizure medication - please pray that any seizure activity is only temporary and not permanent!  Sarah has some yellowish drainage today coming from her nose - pray that this quickly subsides.  Otherwise - she is doing well.  Her feedings have increased to 30ml per hour x 24 hours, plus the olive oil and flaxseed oil.  She is finally gaining some weight again and is LOVING to be held! Thank you ALL for all of your prayers!  Any gifts of love are very much needed and appreciated! God's blessings to all! Diane UPDATE: 5-25-06 Hello, Jeremy is again showing signs of improvement.  He retracts his feet when they are touched, has been yawning all day today, and has moved his arms somewhat when they are touched.  His blood serum levels are still VERY high for the coma drug - so we won't know what state Jeremy is really in for at least a week.  Praise the Lord for each step he takes!!! Sarah is coming down with a bug - yellow discharge nasally and around her trach.  Pray that this goes away quickly.  She is enjoying being held and loves to suck on her thumb.  Her feedings have been increased to 30ml per hour x 24.  She is tolerating the olive oil and flaxseed oil too.  She seems to need a LOT of calories in order to gain weight.  Her Cpap trials are going well, her oxygen is between 21-23% (room air is 21%). Continue to pray for her  heart, liver and lungs to be strengthened and heal! Keep the prayers coming - God is faithful, loving, and merciful to those who  love him - Praise His Holy Name!!! God Bless, Diane UPDATE: 5-24-06 Hello All, Jeremy is blinking his eyes today and breathing above the respirator - PRAISE THE LORD for each WONDERFUL sign of improvement! God Bless, Diane Praise report - Jeremy had 2 Major bowel movements yesterday!  It is  amazing how excited I can get about these things - every little step is  one step further to having Jeremy back with us again! God Bless, Diane UPDATE: 5-23-06 Hello All, Jeremy update:  The doctors have discontinued Jeremy's ''coma drug'' today.  It will take about  a week to get out of his system (50% half life after 50 hours).  His CT scan showed some decreased swelling of his brain - Praise the Lord!  Each day his ICP numbers seem to come down a little, and stay more stable during the day/night.  The doctors have talked about removing the ICP monitor from his brain tomorrow - please pray that the swelling/pressure continues to come down!  He is also off of the mannitol (the diuretic that helped to reduce swelling), and the saline solution (used to help with inflammation).  Due to the drugs, Jeremy hasn't been able to have a bowel movement since the accident (they have tried to assist him), and he has required insulin, since his organs are too asleep, to help with his sugar levels.  Once the coma drugs are out of his system is when we will know if he is in his ''own'' coma, or if he will wake up and to what degree. We continue to pray for his pressures to come down, for the brain to return to normal size, for his clavicle and 3 vertebrae (T5,T7,T8)  to heal, and for Jeremy to  wake up (all organs) and be able to move, remember his life story, and develop an even closer walk with the LORD!   PRAY THAT HE HEALS QUICKLY! Sarah update: - she is continuing to have sprinting trials on the Cpap.   Her oxygen has been fluctuating from 21-24% (room air is 21%) - we are getting closer to not needing the oxygen - now we need to strengthen her muscles to breathe without any assistance.  She continues to gain a little weight each day (she is up to 7lb 3oz. -  Praise the Lord! We are trying to find a way to have Jeremy's brother, Joshua, come home from China to be  close during the days/weeks ahead.  The airline tickets are $1800, and the frequent flyer miles he would need are 240,000 from Northwest airlines.  If anyone would like to help Joshua come home - please email me, or call.  I don't know how the miles thing works, but I believe that anyone can donate to his frequent flyer account. PLEASE  PRAYERFULLY CONSIDER IF YOU WOULD BE ABLE TO HELP - THANKYOU! Keep the prayers coming - thank you for your faithfulness to PRAY!!! Please forward to everyone on your prayer lists - thanks!  Blessings to you all!!! Diane UPDATE: 5-20-06 Hello All, Jeremy is hanging in the 20's today for ICP's, which is better then yesterday.  He required a new central IV line, as the other one is infected.  They plan to keep his medications the same throughout the weekend.  His CT scan today showed a slight improvement - we will take "slight"!  Praise the LORD!  On Monday, they will do another CT scan to check for signs of improvement.  It sounds like the coma drugs will need to be stopped - so next week is critical - Jeremy NEEDS to improve and quickly! Keep the prayers coming - I know the LORD is faithful to those who love Him!  All His promises are Yes, and Amen!!!  We continue to believe and trust the LORD with Jeremy's life and are praying for His perfect will to be shown through it. God's blessings to each and everyone for all you have done for Sarah and for Jeremy! Diane UPDATE: 5-19-06 Hello Everyone (please forward to everyone that is willing to pray), I just found out that the Neurosurgeon wants to have a meeting on Monday. Jeremy is at a point where medications have to be removed, as they will start to shut down all of his internal organ functions if they are continued (we don't know how much damage is going on - I am praying that his organs are fine). This next week is a live, or die situation as they start to remove the coma drugs... JEREMY'S ICP'S ''NEED'' TO COME DOWN AND QUICKLY! This weekend is SO critical! Please continue to pray for his inter-cranial pressures to decrease and return to normal, and for a complete healing with no residual damage! God Bless, Diane UPDATE: 5-18-06 Hello all (please pass this along to everyone you know that is willing to pray for our children), Jeremy is having a hard day again today.  He did well through the night (ICP's were staying in the low 20's), but this morning his ICP's have been going up.  His CPP's are low - high 40's, low 50s (should be above 60) - this is the oxygen % going to the brain.  They are unable again to give him any mannitol as his serum osmolarity is too high.  The doctors are playing the game of which drug to give Jeremy to help get his CPP's up and his ICP's down.  His chest xray does show some improvement in his lungs, which is wonderful! Please continue to pray for a complete recovery for Jeremy!  We praise the Lord for Jeremy's life - he is SO precious! Sarah is having a very good day today - she continues to improve with her Cpap trails.  They have increased her food and she is adjusting well. I know that many of you are praying daily and I want you to know that I am SO  thankful for ALL of you! God Bless, Diane UPDATE: 5-17-06 Blessings to all of you, Jeremy's ICP's are still in the high 20's, low 30's.  Continue to pray that the swelling goes down in his brain and that the pressures return to normal  The doctors continue to go into "unknown territory" in terms of treatment for him.  His pentobarbitol is at unheard of levels in hopes of keeping the intercranial pressures down (he is flat lined on the EEG).  They haven't been able to give him any Manitol (diurectic) the last 2 times (usually given every 4 hours), as his blood osmolarity is too high (I don't know what this means - sorry).  Jeremy did require a blood transfusion today as his hemoglobin was only 7.4.  They are not giving him any nutrition as they are trying to keep him as dried out as they can. We continue to press in and pray for a complete recovery for Jeremy!  God is able to do ANYTHING for those who love Him, and I know that Jeremy loves the Lord.  Keep the prayers coming.  Pray for his lungs to work properly (he has an infection), for the blood infection to clear (he is on 2 antibiotics), and mostly for his brain to stop swelling/bleeding. Sarah is having a good day today.  She is on her C-pap sprinting trials and doing well.  Her infection around her G-tube and trach seems to be much better.  She continues to have an increase in air in her belly, which can be due to the ventilator pressures.  We keep trying to adjust this in hopes of her belly returning to normal size.  The doctors have increased her caloric intake today as she has stalled out on weight gain.  I am told that the C-pap does burn more calories - so this could be the reason.  Pray for increased strength, healing - lungs, liver, heart, and normal development. God's blessings to ALL of you as you join us in MUCH NEEDED prayer! Diane UPDATE: 5-16-06 Jeremy's pressures continue to increase, even after the bone flap was removed. The recent CT scan doesn't show anything else that can be done to help decrease the swelling of his brain. The doctors have called us and said that there is nothing else they can do. It is ALL in God's hands - I realize that it always has been. This continues to be VERY difficult. The peace I have is this: I know that Jeremy loves the Lord and that the Lord loves him as well! We have been praying at the hospital, standing in faith for his recovery. A rainbow could be seen from outside the hospital window, as the clouds moved in - what a blessing to see God's promise in the sky, even through our sorrows. We continue to press in to pray for the swelling on Jeremy's brain to subside and return to normal. Please pray for the doctors and nurses as they care for Jeremy - for supernatural wisdom and knowledge in providing care to help him. Thank you for praying with us for Jeremy to be completely restored! Diane UPDATE: 5-15-06 9:00AM: Diane called to ask for prayer for Jeremy. He is headed to surgery as I type this to try to relieve the pressure building on his brain. Diane also needs prayer for strength as she tries to be with her two children at different hospitals. We will update more later....Elizabeth UPDATE: 5-14-06 Hello, Jeremy has had a very hard day today. His ICP's keep going up and down, and up again. They continue to try to keep his ICP (intercranial pressure) down, by increasing the coma drugs, mannitol, lasix, and morphine. They are having a difficult time with this balancing act. PLEASE PRAY FOR THE SWELLING AND BLEEDING TO CEASE! They will be doing a CT scan Monday morning at 5:00am to see if their are any changes. We are praying for wonderful news that his brain is healing and the swelling/bleeding is decreasing! We haven't discussed the 3 vertebrae fractures - pray that these heal completely, along with his left clavicle. It seems that there isn't much else they can do at this point, except continue to try to control the ICP pressure with the drugs. We are told that his levels of drugs are quite high - pray for no long term affects from his injury, or drugs. His temperature is now normal, and his pulse has come down. He continues to be on antibiotics for the blood infection (gram positive cocci). His glucose is high tonight, so they are giving him some insulin to help. Sarah is doing well this evening. They stopped her Cpap trials this morning as her blood gases were up (settings were not correct). We will re-address the ventilator/Cpap ideas tomorrow. Her weight needs to increase again - she is kind of at a stand still - a little over 7 lbs. They may increase her caloric intake again. We are going to have her vision checked, as she doesn't seem to react to us the way she used to. Pray for continued healing with her lungs - we are hoping for much needed strength in her airways! Thank you ALL for your continued prayers for Sarah and Jeremy! May the Lord continue to bless each of you for your faithfulness to pray! Forever I Will Praise His Name! Diane UPDATE: 5-12-06 Jeremy and Sarah Updates: Hi All, Jeremy is more stable today - Praise the Lord!  He is scheduled to get a trach in the morning (Friday).  They are talking about stopping the Pentobarbitol (coma drug) after the weekend.  It usually takes 1-2 weeks for the drug to be completely out of the system before he will be able to wake up (we are praying that he will be able to wake up JUST FINE!).  Great news!!!  They had decreased the amount of the pentobarbitol from 3mcg to 2mcg., and tonight at 11:30pm he ''coughed'' when they were suctioning him and his ICP's (intercrainial pressures) remained good!!!  His pupils are also dilated and reactive to light - which is great!  This means that he is not in as deep of a coma as they thought they had induced, and he is having more brain activity as well.  As long as his ICP's stay low, they won't increase the coma drug.  Another CT scan was done today - no change.  They will do another one on Monday. Prayer request:  Jeremy has a blood infection, along with a lung infection (different bacteria in both areas).  They have him on some heavy duty antibiotics to take care of it. I will continue to praise the Lord for ALL of my wonderful children!!!  The Lord is one and worthy to be praised!  The Lord is CARRYING me right now (along with everyone else, I'm sure), as I am tired all day long, and yet I feel His presence so close it renews my strength to make it through the day.  The days/weeks/months have a way of blending together. We continue to pray that Jeremy will wake up and be completely healed!  We Trust the LORD - He can do anything!!! Sarah update: Sarah graduated today to the 5th floor of the hospital (she is no longer in the PICU).  She is on her home ventilator and doing well.  Her belly is still enlarged - pray that the air in her stomach and intestines will diminish, also she has a slight infection around her G-tube.  We continue to pray that she will not have anymore infections before coming home.  Sarah is being weaned from the ventilator - she is at a rate of 12 during the day and 18 now at night.  They will continue to decrease this, until she is breathing on her own.  She is doing GREAT! Rik and I have opted not to take the trach classes yet, due to Jeremy's condition.  After we take the classes, then Sarah will be that much closer to coming home.  Pray for protection for her in these weeks ahead, along with continued healing for her lungs, heart, and liver. Keep the prayers coming - thank you EVERYONE! Diane UPDATE: 5-11-06 Hello all, Keep the prayers coming! We are almost at the 96 hours after the accident for swelling/bleeding on the brain. His pressures have been going above 20 after they readjusted him at 1:30pm. Before this he was below 10. He needs to stay below 20 - below 10 is even better. He has had a fever for the past 2 days, so they have continue to give him tylenol and ice him. He is growing something in the culture that they took from his lungs, so they have started him on 2 heavy duty, broad spectrum antibiotics, until they can isolate what it is. He will continue to be in the drug induced coma until next week. They will start to wean the coma drugs to see if he is in a coma on his own, and wean the sedation and pain medication, to see if he can respond. PLEASE pray for the swelling and bleeding to cease in his brain, lungs and tissues. We continue to pray for a complete healing within his body, as we plead the blood of Jesus on his life. I know that he loves the Lord and that the Lord is holding him right now. I continue to trust the Lord, as He loves Jeremy more then I! Forever I will praise His name! I pray that he will continue to sing praises, and give honor to the Lord with his life when he awakes! I look forward to the day I can see my son open his eyes, hear his voice, and watch him move and most of all - sing praises to our Savior Jesus again! Give God the glory and honor due Him, Diane UPDATE: 5-10-06 Hello, Jeremy is still in a drug induced coma.  The plan is to keep him in this state for 5-7 days until the swelling peaks and starts to subside.  He will be getting trached on Thursday, or Friday in hopes of trying to bring him out of sedation next week.  Please pray that this surgery goes well.  He has had a high fever throughout the day, so they have been icing him and have started giving him tylenol this evening.  They are testing some cultures from his lungs (looking for an infection) but they won't be back until tomorrow night. His pressures seemed lower today - which is WONDERFUL.  They seem to think that his intercranial pressures will peak in the next 48 hours - KEEP THE PRAYERS COMING FOR THE PRESSURES TO SUBSIDE, FOR THE BLEEDING TO CEASE, FOR THE SWELLING IN HIS BRAIN TO GO DOWN, AND FOR A COMPLETE RECOVERY - THANKS! Diane UPDATE: 5-9-06 Hello, Please pass this on to everyone - thank you! Jeremy was in a motorcycle accident 2 days ago and is at North Memorial Hospital. Tonight they have induced Jeremy (my 19yr old son) into a coma in hopes of bringing the increasing pressures down in the brain (the drugs are not enough). His brain is swelling and bleeding and he is on a ventilator. The CT scan today did show that the bleeding and swelling was down a VERY SMALL bit from the previous xrays this afternoon, yet his ICP (intercranial pressure) continues to increase to VERY high levels since then (I wish I understood all that is going on). He has a severe brain injury (brain swelling, bruising), 3 fractured vertebrae t5, t7 and t8, bleeding in his lungs, and his left clavical is broken as well. If the drug induced coma does not work the next step is surgery to remove a plate of his skull in hopes of relieving the increasing pressure. We are told that pressures in the brain usually peak within 72-96 hours, so we have atleast 2 days of possible additional swelling. They are juggling a LOT of drugs to keep his body as stable as they can. Sarah, our daughter, on the otherhand at Children's Hospital is doing well. She is gaining weight (7lb, 4oz) and doing very well with her trach. They changed her trach today to a custom fit one so that it won't rub on her chin and chest. We will be able to lay her on her tummy now too. She seems content and less stressed. We were supposed to go to trach classes this Friday all day, but due to Jeremy's condition this will be changed. Keep the prayers coming - thank you ALL! If anyone is able to watch our 4 children - please let us know, as we are traveling between the two hospitals to be with our 2 children. This is a very difficult time, yet I know the Lord will see us through ALL that is ahead. Thank you for all of your prayer support!!!! Diane UPDATE: 5-6-06 Hello All Prayer Warriors, Sarah is now a little over 7 lbs. and 20'' long. She will be 5 months old on the 12th of May. I can't believe it - Praise the LORD! She LOVES sucking on her hands! Pray for continued healing within her body - lungs, heart, liver, EVERYTHING, and for continued growth as well - THANKS! UPDATE: 5-2-06 Well, they looked down Sarah's nose and throat today.  Sarah has floppy airways at this time, so she now has a trach in place.  We are praying that over time, with good nutrition and growth, her airways/vocal chords will heal and remain open so that her trach can be removed.  The next step now is weaning her OFF of the ventilator and back to her breathing on her own unassisted.  She is resting with sedation this evening.  The plan is to start her feedings back tomorrow, and sprinting with the ventilator soon (this makes her work her muscles herself).  They are also talking about installing a broviac line for antibiotics, and blood draws, which requires another trip back to the operating room this week.  I'll keep you posted. THANK YOU ALL for your continued coverage in prayer for Sarah - she is a fighter!  The Lord has plans for each of us, and I know he includes his special Sarah as well! Blessings to everyone! Diane UPDATE: 5-1-06 Diane called to say that Sarah Rose will in surgery at 3:30. She has blockage between her nose and lungs. They will doing a bronch and possibly a trach. Please keep her covered in prayer. She had a really close call over the weekend. We will keep you updated and all prayers are appreciated....Elizabeth UPDATE: 4-28-06 Diane has just called. Sarah Rose is on her way down to be placed back on the ventilator. She is in respiratory distress as I type this. Please say a prayer for her recovery and healing and strength in her lungs. We will update again when we know more....Thank you ...Elizabeth. UPDATE: 4-27-06 Hello, Sarah is still struggling to breathe while off of the ventilator.  She is still on the MR850, (high flow nasal canula) to assist her breathing.  Please pray that her lungs will not be so stiff, and that she can continue to strengthen her muscles and lungs.  She seems to be having some upper  airway obstruction, which could be due to incorrect nasal suctioning, or damage due to the ventilator in her tracheal area.   Her nares are now both impassible with any deep suctioning equipment (only the left was narrowed before).  This hinders her  ability to breathe. Sarah has several fractured ribs on the left side, which I am assuming would effect her breathing too.  Pray for a speedy healing and improved immune function. Sarah is a little over 6 lbs - pray for continued growth and normal development.  Her infections seem to be gone, and her wound around the G-tube is finally healing as well.  Her bilirubin is low, not normal yet, but she is improving.  She hasn't needed any new blood transfusions.  and her albumin levels are being maintained - pray that she will start to make her own blood soon.  Sarah is off of the Lasix (diuretic), so we are not chasing her potassium levels, sodium levels, or magnesium levels anymore.  Her iron and ferratin levels are still TOO high - pray that this does not adversely effect her system. Much continued prayer for Healing for her Heart, Lungs, Liver, Kidneys, Digestive system, etc. We are hoping to bring her home possibly next week (per the doctors).  I still believe that she is breathing a little too  hard to go home, but we seem to be  at  a point again where they are trying to push her out the door. We are trusting the Lord that he will continue to give us wisdom, and knowledge in speaking with the doctors and nursing staff.  Pray for continued guidance in ALL matters!  Thank you for all of your continued prayers for God's precious little Sarah! God Bless, Diane UPDATE: 4-19-06 Sarah is still off of the ventilator and her gases are looking good! She is tugging while breathing, but seems to be handling it well, and FINALLY slept today for awhile after being awake for 24 hours straight (due to meds). They are keeping a close eye on how she is working to breathe. Both of her nostrals are too restrictive/blocked, so we are having an ENT doctor look at her in the morning. This is most likely due to the damage that she received while at the previous hospital. Her blood culture came back negative - praise report as well!!!! Keep the prayers coming for "respiratory" issues, infections, etc. for Peter(T18) 1yr old, Jordan (T18) 7yr old girl, and Sarah - all at Mpls. Childrens - thanks! UPDATE: 4-17-06 3:14PM Sarah Rose has been taken off the respirator and so far she is doing well. There are a lot of secretions so please pray for her lungs to heal and infections to go away and remain gone. We will keep you updated on her progress. Also, please be in prayer for a one year old boy, Peter, who is PICU due bouts of respiratory failure. The plans are to successfully extubate Sarah, Monday morning (4/17) around 11:00 am (if she is awake). We are asking for the mighty hand of God to touch Sarah's lungs to strengthen them so that she can breathe without assistance. Please pray that Sarah will be able to inhale/exhale properly so that she will not need surgery to be placed on a trach/vent. Sarah has been practicing/weaning from the vent for the past 4 days. We are praying that she doesn't have any malaysia (floppy airways which can interfere with breathing) in her bronchial area, as a study has not been done to test for this yet. Sarah still has bacteria in her lungs, so they have kept her on the antibiotics. I don't know for how long though - they are running out of peripheral lines for the IV antibiotics. They have done another blood culture - we should see the initial results in the morning. We are praying that her blood culture will still be negative for any bacteria! I was incorrect about her weight - Sarah is NOW 6 lbs - What a wonderful praise report! She needs to continue to gain weight - this doesn't seem easy for her - with God all things are possible and we continue to pray for His food/drink to sustain her. Sarah is now 4 months old as well - I can't believe we have been blessed with her precious life for 4 months - God is SO good! We continue to pray and petition the Lord for many more wonderful years with her! I continue to trust in the Lord for He is SO good, and worthy to be praised! I know that he is watching over her, and loves her more then I... Keep the prayers coming - God desires to be close to us all and loves to have a relationship with each of us - He DOES care! Diane UPDATE: 4-10-06 Hello, Please pray for Sarah's lungs to be strengthened in preparation for extubation (possibly next week). The doctors have decided to allow her to gain some weight and strength for another week before trying her off the ventilator. We will be having a meeting on Friday the 14th to discuss the ''plan''. If it doesn't work - then we are going to be faced with a trach/vent situation. We are praying for a mighty healing for her lungs, so that she will be able to clear the CO2 correctly and not need ventilation to assist her. Her blood cultures are still negative for the serracia and the enterococcus for day 2, which is wonderful! Once the cultures are confirmed after 3 days, then she will still be on antibiotics for at least a week. Sarah is still having trouble with a lot of gas in her stomach/intestines, which bloats her up in her abdominal area (this is new after the G-tube was placed). They don't seem to know what is causing it. Her abdominal area needs to return to normal size so that it doesn't cause pressure on her diaphram/lungs when she is extubated, which could prevent her from being able to breathe as well as she should. Keep the prayers coming and THANK YOU EVERYONE! Diane UPDATE: 4-9-06 Hello Prayer Warriors - this is a war!, Thank you for all of your faithful prayers for Sarah! God is showing His signs and wonders in Sarah's life! Great news again today! Praise the LORD! Sarah's albumin levels are the highest they have been since her birth, and now her hemoglobin has increased, which has never happened before - she has previously always had blood transfusions. This is such a wonderful, large step, towards helping her body to heal! Her echocardiogram showed that her left side of her heart was working wonderfully - now we are asking for the right side to line up by the will of God as well, and be healed! She does have a few holes in her heart - I am not sure if the old ones are leaking, or if these are new ones - 2 in between the ventricles, and 1 in between the atrium. Also - a triscupid valve and another valve are regurgitating - this needs to stop as well. Her blood cultures are STILL negative for the enterococcus and serracia, so we are looking at the 15th of April as the last day for antibiotics, I believe. We have not started to extubate her from the ventilator yet - hopefully, we can get her to gain some weight first. They want to make sure that her cultures are negative (they grow them for 3 days). We continue to remember that "Nothing is too small for our loving, merciful, ever powerful, graceful GOD"! We know that God has mighty plans for His children and we know that He counts Sarah as one of them as well! Keep the prayers coming - the enemy is defeated! Yes - AMEN! God Bless, Diane ADDED: 9-10-05 Condition=Our unborn daughter has been diagnosed with Trisomy 18. She is due on Nov. 30th, 2005 Comments: My husband and I learned that Sarah was a special child, with Trisomy 18 (Edward's syndrome) when I was about 17 weeks along. We were told SO many times to abort her (actually the doctors call it "deliver her early", instead of using the term abortion). We have had many battles with doctors, and nurses as they are taught in medical school to allow these babies to die, and NOT to treat, or care for them (it was the same way in the 60's-70's with Trisomy 21 (Downs syndrome). It seems that there is no value to human life anymore (God talks about this happening as we get closer to His return), unless you are perfect (in the world's eyes). I began to search on the internet for any and all information on the subject trying to educate myself to prepare for her precious arrival on how we could help her, as none was given by any of the medical profession except for the abortion idea. I have met MANY families in my search, that also have Trisomy 18 children that are living and have become friends with many of the moms. There are many families that have chosen life for these special children as we have, and they are a wonderful resource of information and support. We continue to trust the LORD with Sarah's life, and lean on Him for our strength, and for her continued healing. It is a daily battle, yet we will stand firm in our faith and speak boldly about God's love for ALL children, regardless of any health problem. Please join us in praying for Sarah! Thank you for ALL of your prayers! God Bless, Diane I thought I would send you a photo of our unborn daughter, Sarah, taken on 8/17/05. She weighed in at 1 lb. 2 oz. Isn't she beautiful?! Thank you for all prayers for her! We are continuing to pray for a complete healing, which includes: that her body will get rid of the extra 18th chromosome, that the VSD (hole) in her heart will close, that her brain will develop normally, that her hands will be able to open and close, that she will be able to nurse, breathe, etc. She is swallowing amniotic fluid, which is a good sign! We continue to trust the Lord and pray that His glory will be revealed through her life! God Bless, Rik and Diane 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. 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