Battling the Unbelief of Despondency: "Battling the Unbelief of Despondency on DesiringGod.org"
I know this is a busy time of year but if you could please take a minuet or two to please send the following info. I know our faithful prayer warriors would love to see updates here at PFLA.
1. CURRENT PRAYER REQUESTS and PRAISE REPORTS
2. NEW PHOTOS these little ones CHANGE so send in a current photo of your angel!
Looking forward to hearing from each one of you. If you have any questions, please e-mail me.
Prayers For Little Angels
1. That Samuel’s upcoming surgery will be a success and, together with his recovery, will pass without any complications and as little pain and discomfort as possible.
2. That the Lord will continue to bless and keep Samuel safely in the palm of his hand.
3. That Samuel’s developmental progress will increase steadily, as it has over the past couple of months.
4. That Samuel’s immune system will continue to strengthen.
5. That I will continue to draw my strength and faith from my Saviour enabling me to not only face the challenges and trials brought into our lives by RTS, but also to continue to give my family the love, care and attention they deserve.
Sam has recently learnt to sit unsupported and, although he cannot pull himself up into a sitting position while lying down, if he is even on the slightest slant can manage to sit himself up by using his tummy muscles. Sam’s strength in his legs and co-ordination improves daily. He loves “walking” while holding mom or dad’s hands and, although its not his favourite activity in the world, is even tolerating some crawling exercises now. Although he cannot yet say any words, he LOVES to “talk” and has specially reserved voices for different activities like talking to the animals, looking at photo’s on the wall and singing while driving in the car. He has faced many challenges in his still very short life but, regardless of what he might be going through he seems to (almost divinely) maintain an awe-inspiring joy and enthusiasm for life. He has touched countless people’s lives, many who we’ve not even met face-to-face and this is the reason why I know he has been put on this Earth for something amazing.
Samuel was born at 32 weeks into my pregnancy, weighing 1.485kg and in respiratory distress. He was fairly unresponsive immediately after his birth and was immediately rushed to the NICU where, although his weight was for more than most of the preemie babies in there, his inability to breathe put him on par with the smallest of the little ones. Sam was ventilated for seven weeks of his nine week stay in NICU. He could also not swallow and eventually went home with a feeding tube. Since he came home, sixteen months ago, he has been diagnosed with chronic reflux, chronic constipation, respiratory disease, delayed neurological development, angulated thumbs, palmar hyperhidrosis, obstructive sleep apnoea, a neurogenic bladder, deviated septum, small airways, turned-in left foot, strabismus, high palate, sensory integration dysfunction and more recently, a tethered spinal cord. He has been in hospital five times in the last eleven months for three chest infections, a very bad kidney infection and one surgery to rectify his angulated thumbs. Sam currently works with a neuro-therapist and speech therapist. He is also meant to have been seen by an occupation therapist to aid with his sensory/reflex integration dysfunction but we unfortunately have to wait for our financial situation to improve before we can go this route. He has a paediatrician, ophthalmologist, general practitioner, orthopaedic surgeon for his legs and feet, orthopaedic surgeon for his hands, an ENT specialist, two anaesthetists and a neurosurgeon.
UPDATED: MAY 20140
1) That Noah would say mamma or dadda
2) Noah would be able to learn to sit independently
3) That he would be able to learn to self-feed himself
4) Being able to crawl and walk
5) Be able to share with the world himself what a miracle he is and how God has helped him.
1) Noah has learned to roll over on his own
2) He is able to eat all purees and now meltables
3) He is now weight bearing on his arms and legs
4) He is now able to grab objects with both hands
5) Pulls himself up to sitting position in his highchair
Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section at 8:51am. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. Noah's miracle has brought our story to all of you. Although Noah faces many challenges, he continues to defy all the odds against him.
SNYPOSIS OF NEED:
Noah's is currently participating in ABM/Feldenkrais therapy which is not covered by insurance. In a short two months Noah has learned to roll over and is now weight bearing. His body is also calmer and he is arching much less. We have found that Noah is responding very well to this new therapy and our wish is to continue with it for as long as we can. This therapy out of pocket can cost up to $1,200 monthly.
IF YOU ARE INTERESTED IN SUPPORTING THIS NEED PLEASE SEND YOUR DONATION TO:
c/o Stacy Warden
PO Box 746653
Arvada, CO 80006
You may also visit Noah's site and make a donation directly through paypal by using Chip-in HERE
PFLA would like to reach out to everyone asking for as much or as little as you can offer to a worthy cause. Below you will find a link to Firstgiving (Fundraising page) and beyond that link you will find a short story about a little girl who has struggled her entire life just to live. Haley has been living with challenges beyond what most have ever dreamed of. Please take a minute to log in and help out.
Haley is now 12 years old. She is still suffering from daily seizures. She continues to have profound communication delays and is nonverbal. Her autism and behaviors continue to dictate much of her life.......she works all day at school with an aide and is seen by an ABA therapist about 8 hours a week, and a speech therapist to help advance her skills and help her to be the best Haley she can be! She still loves music, jumping on the tramp and water and enjoys spending time with her families! She is such a great kid and turning into a sweet young lady. It goes without saying that we have ongoing challenges with her, but she continues to be a light in a dark world!
Haley's Walkathon PAGE Sponsor her here!
UPDATED MAY 2010
Lauren is a 23 year old college student and just had her first child. Lillian Rachelle was born on March 22, 2010 with several conditions. She's already had one surgery to correct her diaphragmatic hernia (on April 7, 2010) but will continue to struggle with Turner Syndrome and Agenesis of the Corpus Callosum. Lauren is trying to be strong for her baby with the support of her family, friends and God. Lillian's father is not in her life. Please read Lauren and Lillian's story and let us know if you can be of help to this sweet family of two. Currently Lillian is in the Texas Children's Hospital Level III NICU.
THEIR BLOG SPOT
1. That Reagan would respond well to the new program.
2. That she will learn to tolerate and even love some of the different kinds of movements that are invlolved in the program.
3. That she would continue to strengthen and grow physically and that she will grow into a strong woman of God and share her amazing testimony that she is building.
1. She is loving the new gluten, dairy, wheat, and soy free diet! I can't believe she loves it this much! Praise God!
2. She has decreased her time on her inclined floor from one minute to 20 seconds! She is figuring it out!
3. Thank God for the help I've been getting from church friends and family to be able to do Reagan's program.
Reagan was born cyanotic (blue, not breathing). After a short time she breathed and her color returned. She also had a cephalohematoma (brain bleed) in utero. After 6 days of struggling with poor suck and being very irritable, she started having tonic clonic seizures. She was flown to the hospital and put on anti-convulsive meds. She stayed on this medication for 4 months while receiving in-home therapies. Her seizures stopped at about 5 months old and we discontinued med. She was diagnosed with hypotonia, neonatal seizures and global developmental delay. Today she still has low tone, no speech, and is immobile as far as crawling or walking. We started a new therapy in Dec. 2009 that invlolved traveling to Philadelphia, PA for a parent's course on "What to do with your brain-injured child." We read this book and knew that's what Reagan had...even though doctor's didn't admit it. We took the five day course and developed a home program that is taught by me, her mom, every day. It is very intense but is yielding fantastic results. The link is braininjuredchild.org if anyone wants more information. We go back every 6 months to talk about her successes and alter her program to bring her to the next level of development. So far her chronic constipation has subsided...now has loose stools every day! Her chewing and swallowing have greatly improved. she has grown in length and weight and has started making sounds. She travels on her inclined floor and decreasing her time on it. She breathes deeper and has color to her finally. Praise God for leading us to this!
UPDATED: AUGUST 09
Alyssa's Blog Site
Since our initial prayer request Alyssa has been doing remarkably well. She had a serious respiratory infection in December requiring a brief hospital stay and more recently a mild bout with pneumonia; but recovered well from both. Routine appointments with her various specialist do not reveal anything overtly concerning. Alyssa now wears a brace for treatment of scoliosis and may require tubes in her ears for hearing concerns. Eating and maintaining her weight is a constant concern. Many of her more serious concerns like her diaphragmatic hernia, remain a non-issue. I know that her wellbeing is because of the petitions and prayers on her behalf.
Thank you for the continued prayer support. In two months Alyssa will be 2 years old! For babies (kids) with Trisomy 18 this is yet another significant milestone. In honor of Alyssa and to increase awareness of Trisomy 18 in our community ; a 5K run/walk will take place in July. We are very excited to participate in Alyssa's 5K (www.hopeforalyssa.com) not only to celebrate our little girl but to remember all the babies who have been and will be born with Trisomy 18.
Even though Alyssa is well overall, there are various struggles in our daily life to keep her healthy and engaged. We want to help her to develop skills and enjoy her environment to the fullest. Please keep praying that Alyssa will make strides and will remain with us; as this is our hearts desire. God is good and I trust in his plan; prayers for this to remain in my heart during whatever struggles/triumphs we face would also be wonderful. Thanks so much!!
1. That Alyssa recovers well from 2 separate episodes with sedation. The first being 8/25 for an CT scan and MRI. Then in September (the date to be determined) for right eye surgery.
2. Prayers for good outcomes with the strabismus correction would be appreciated. Alyssa is having issues with vomiting we would like to avoid surgical intervention, prayers for wisdom and practical interventions that would allow her to be treated in the least invasive method would also be welcomed.
1. Alyssa reached the milestone of her first birthday on 7/15/2009. We give praise to God for His mercies over the last year. She has exceeded the expectations of the doctors and continues to amaze us she steadily gains skills.
Alyssa is a joy. She is very much loved by her older brothers and sister. Dad and mom think she's pretty neat too. Her diagnosis of Trisomy 18 was confirmed 2 days after she was born. This was devastating news as the pregnancy was somewhat uneventful, in comparison to my other more difficult pregnancies. We were told not to expect her to survive; the time intervals changing from hours to no longer than 3 months. Our first thoughts was that we loved her and didn't want to let her go...
Now at 13 months Alyssa is considered a "long term survivor" in the T18 world. She is a cheerful interactive baby. Alyssa loves to smile and coo. Slowly she is fulfilling each developmental stage for a baby; this is much more than what we were told to expect. She is showing us what she can and will do. It is with praise-filled amazement that we enjoy her as she continues to defy expectations. Alyssa has many needs and medical appointments are frequent but her "spit-fire" nature encourages us. We know it is by God's grace that she is here and hope that we will enjoy her for many years to come.
To begin, we lost beautiful, identical twin girls November 15th, 2006. It was a routine ultrasound that shattered the pregnancy bubble we both lived in. They couldn't find a heartbeat on either baby. We had our baby shower the day before, so our prayer warriors stormed Heaven with prayer for our family while we induced labor and birthed Emma Claire and Ella Grace, they were just over 28 weeks gestation. To this day, we still have no "medical" reason for their passing. God knows why He chose them, that's the only answer I need. We chose to try again for a baby about 8 months after our loss. Much to our surprise we did indeed conceive and we carried on during the pregnancy as usual. Meanwhile, my heart and soul waited anxiously to hold this baby in my arms, as I no longer had a desire to be pregnant, the waiting was too scary. We found out our sweet boy would need open heart surgery soon after his birth. He had a congenital heart defect known as Transposition of the Great Arteries, the surgeon assured us that although there was a risk, his condition was the lesser of the evils. Needless to say, again our prayer warriors stormed Heaven's doors with prayer for Joshua and he was bathed in prayer before he even made an entrance to this world. We honestly did the best we could to hand it over to God, as we know that the Ultimate Physician is capable of all things. If He chose to save our son's life and use his survival to bring glory and honor to Him then we would do everything in our power to make sure that happened. Joshua was rushed off to NICU just minutes after his birth. He had his surgery to repair this arteries when he was just 7 days old. And, to say that was the longest 6 hours of my life. I don't remember much during the time he was in surgery, it must have been the prayer that kept us from stumbling. God had His mighty hand on our son's heart those moments, and He was guiding our surgeon too! When we saw the surgeon come out to tell us Joshua did exceptionally well and was on his way to recover in the cardiovascular intensive care floor, we could finally exhale! From that moment on, Joshua has exceeded all the odds. He is a survivor that's for sure. He did surprise all his caretakers by recovering so quickly. We just celebrated his 1st birthday and what a joyous moment it was for our family. This little guy has been through so much and survived so much. And, we love him with all our heart and soul. Life is very short and we are never promised to live tomorrow. Since our loss we have diligently strives to slow down and spend more precious time with the ones we love. Joshua's heart surgery was God's way of making us completely count on Him. He brought us to our knees to make us look up to Him. I feel that my son's survival will be a testimony to those that need to hear how much God loves them. My prayer is that his life will be used for God's perfect plan. I count it all joy when we fell into that trial, it produced the perfect fruit that is described so many times in the Bible. It's now my mission to pray over little ones that are going through sickness, surgery, pain and suffering. Blessings, Tina Johns
Nathan had another brain surgery at the end of December, 2009 to burst a cyst and to have a shunt permanently placed in his brain to help brain fluid drain in case a cyst blocks the way again. We also found out that he has permanent peripheral vision blindness on his right, but we're so thankful that his front vision is 20/20. He has recovered well and isn't showing any symptoms from the brain tumor or from the one cyst which the surgeon couldn't get.
Please continue to pray that:
*Nathan and our whole family would grow in our faith & love for the Lord
*The Lord would heal Nathan of his brain tumor and cysts
*The tumor and cysts would not do any more damage to Nathan
*We would have wisdom with how to take care of him
Nathan is 6 and got diagnosed with a brain tumor when he was 5 1/2. He had brain surgery in September 2008, and has been undergoing chemotherapy treatments since then to shrink the tumor.
1) For Annabel's constant battles with UTI's
2) For Annabel's pulmonary hypertension
3)For her airway that is slowly getting weaker and weaker
4)For her increasing need for oxygen
1) That Annabel will be 5 years old next week d.o.b. 3/17/05
2) For the sucess of the tethered cord surgery done 1/8/10
3) For doctors willing to help and see her purpose in living
4)Annabel continues to inspired and bless all those she meets
ABIGAIL'S BLOG SITE
UPDATED: NOVEMBER 2010
1. Another EEG showed that the spiking has returned in the front right lobe, please pray her seizure do not return
2. She continues to sit in tri-pod position for only 15-20 sec all by herself, please pray that her time will increase
3. She is having bowel issues, please pray this will resolve.. going on now for over a month
1. Back in July we lost nursing, I went to court to fight and just found out that we WON! This is a huge accomplishment as it is rare that families win against Medicaid!
2. She is healthy & happy!
3. She is growing up beautifully!
She was my 3rd pregnancy... All was completely perfect no complaints. A few months later a test revealed a 50% chance of down syndrome. We were given the option to terminate which was not an option for us.
On March 8th, 2005 Abigail Grace was born, 8lbs 12.4oz. She had multiple anomalies, dysmorphic features, mid palatal cleft, dysplastic heart valves, hypatomia, a coloboma in her rt optic nerve, duplex kidney, retognathia, failure to thrive & sever developmental delays.
April 2005: She had an emergency surgery for G-Tube and Nissen Fundolopication. Afterwards she developed pneumatosis, NEC and had a PIC line put in place. After testing we were told she was blind in her right eye due to the coloboma. The Genetics department could not give us any answers....
May 2005: Her blood sugars levels dropped to a dangerous low of 43 and found she had dumping syndrome. She was rushed from one hospital to another where she had to be resuscitated after a massive seizure. A MRI revealed a bi-lateral CVA stroke with greater effect to her left side which left her paralyzed and fighting for her life.
September 2005: She was diagnosed with West Syndrome (infantile seizure disorder) which results in epilepsy at the age of two.
December 2006: We found Dr. Orrin Devinsky and flew to NY for an EEG which revealed her brain was in mass confusion. He administered Sabril and on 12/07/06 Abigail's had her last seizure.
April 2007: We repaired her midpalatal cleft which created major breathing complications and she was sent to the PICU one again.
July 2007: We flew to NY again for another EEG which revealed that Abigail's brain was now 90% functioning right. She had some spiking in the right frontal lobe but Sabril continued to keep seizure activity under control.
January 2008: Abigail was diagnosed with Cerebral Palsy, and moderate hip disphalisia. To date Her seizures have returned, the Sabril is no longer working. Her hips are 1/3 of the way out of the sockets.
May 2008: Flew to NY again for another EEG which revealed that Abigail brain is constantly being irritated in the right front lobe and that we should consider surgery to remove this diseased area causing the spiking and seizing.
December 2008: We have decided to put the surgery off and continuing to pray that she hits that long awaited milestone of being seizure free once again! PHEW... And yes God is still on His throne, He is still in control, Abigail's life is in His hands and we love and trust Him even more now than we did before we took one step on this journey He designed just for us! THANK YOU ALL FOR YOUR CONTINUED SUPPORT IN PRAYING FOR OUR LITTLE ANGEL!
Jan- December 2009: Just cruzing right alone, growing up. Still ranging as about a 9 month old baby. We had a few hospitals visits for routine EEGs, and a few seasonal bugs. Faced with brain surgery as an only option to stop seizures, God one week later stopped em dead in their tracts! HE IS AWESOME!!!!!
UPDATED: FEBRUARY 2010
1. We would find a very good preschool program for Zachary
2. He would make big new strides in his physical capabilities now that he has botox and phenol again
3. That we can keep him off of spasticity medications for as long as possible (maybe forever)
4. Zachary would start making leaps and bounds with his verbalization skills
5. We would be able to raise enough funds to get him adult stem cell treatment
1. Zachary learned to say "Car"
2. Zachary can blow air out his mouth on purpose - was able to make a recorder whistle
3. We found a wheelchair on Craigslist that was adjusted for him and "will do" for preschool
4. We are next on the Medicaid waitlist (and may be approved for Medicaid soon - also prayer request that we will be)
Five and a half weeks before his due date, Zachary became extremely stressed in the womb and ceased to move. Renee had complications (high blood pressure, onset of preclampsia) toward the 33rd - 34th week of gestation. On March 8, 2007, at the 35th week of gestation, Zachary was born by emergency c-section weighing only 3 lbs 7oz – extremely small for his gestational age. He was near heart-failure and could have died if he went one more day in the womb. Doctors said his measurements were that of an 8-weeks early baby, not 5-weeks due to in-utero growth retardation.
Unable to breath on his own, doctors rushed him to the Neo-Natal-Intensive-Care-Unit and put him on a ventilator. It took an hour from birth until he was properly intubated with oxygen with his lungs opening correctly. That night, he was transferred to the NICU at the Denver Children’s Hospital. For the next 30 days, Zachary stayed in an incubator and slowly began growing stronger and healthier every day.
In the beginning of April, Zach came home to us weighing only 4 lbs. 5 oz. He was beautiful and healthy. As time went on, we began noticing concerning movements and behavior – poor head control after three months of age, arching of the back, stiff muscles, pointing his toes downward all the time, crossed eyes, clenched fisting of hands, scissoring of legs.
These symptoms built up to a parents’ worst nightmare - spasm-seizures that began on Oct. 3. They were jack-knife convulsions that forced his hands up, his eyes to roll back, and his torso to collapse forward. It was called West Syndrome, a form of infant epilepsy, and the seizures would happen every 5-10 seconds for 5 minute sessions. An MRI revealed severe brain damage and Zachary was diagnosed with Cerebral Palsy – it was the cause of the seizures and the beginning of our ‘special needs’ journey. Because of the brain damage, Zachary has a considerable amount of disruption between his cortex and nervous system communications. It is a significant neurological problem and it is life-long – it cannot be cured.
After two months of intensive medication treatment, including another 8-day hospital stay, Zachary stopped having seizures. To this day, he has remained seizure free. But he still has many other obstacles to overcome – many therapies, special medical equipment, much special attention, many doctors’ appointments ahead, and a lot of intense learning. However, the Lord of the universe, Jesus Christ, has been with us every step of the way, listening and answering prayers throughout this time. And with Him, all things are possible. As parents, we intend to get Zachary all the therapy and treatment we possibly can to help him in all ways during his growth and development. It is our goal to provide him with the best quality of life possible given his condition.
Today, Zachary goes through a regiment of Physical, Occupational, and Speech therapies along with Hyperbaric Oxygen Chamber Treatment, Chiropractic care, Botox & Phenol treatment to help his stiff muscles, and eye surgeries to correct his strabismus. He's approaching 2 years old in March 2009 and he's a happy little boy full of joy.
UPDATED: FEBRUARY 2010
~ EMMA ELIZABETH DUNNAM ~
March 1, 2006 - February 1, 2010
On February 1, 2010, Emma Elizabeth Dunnam finished her race and crossed the finish into the arms of Jesus. We rejoice in her complete healing as she skips and plays on the streets of gold. Emma’s accomplishments on earth were measured by those she inspired. She was the inspiration for Emmas Hugs, Inc., which supports families in the Texas Medical Center. Emma was a gift from God that brought many people around the globe to Christ.
Emma was born March 1, 2006, in Baytown, to Kelvin Lee Dunnam and Christy Marie Langston Dunnam. She is preceded in death by her grandfather, Marvin Dunnam and aunt, Lori Dunnam, and is survived by her parents, brother, Luke Dunnam; sisters, Carleigh and Cora Dunnam; grandparents, Connie Dunnam and Carl and Evelyn Langston; great-grandmothers, Margie Bearden and Minnie Cox; aunt, Cindy Owen and husband, John; uncle; Chris Langston and wife, Paula, cousins, Priscilla Dunnam, Andrew Dunnam, and Brett and Julia Owen; special care giver, Myrtle Arnold; and numerous family members and special friends.
Please Continue To Lift Her Family Up As They Begin The Healing Process!
1. That Gavin can remain seizure free.
2. That he remains healthy and out of the hospital.
3. That his heart can tolerate the demands of his body and that he will not need to have surgery to replace his Mitral valve for a LONG time, if ever.
4. That he can grow developmentally and at least sit up on his own one day.
5. That he can stop gagging and spitting up so much.
1. That he has stayed out of the hospital for one year now!
2. That he has been seizure free for 9 months!
3. That he is more alert and active!
4. That he is alive and such a blessing to our family!
Gavin was born on September 15, 2006. He was born with Down syndrome, severe heart defects and respiratory issues. He has had to endure a lot in his life, thus far. He has had five surgeries and has spent six months of his life in hospitals. He suffered a stroke while recovering from one of the surgeries. He began having seizures shortly after the stroke. CAT scans show that all areas of Gavin's brain were affected by the stroke. Gavin's future developmental progress remains uncertain due to his stroke. Right now Gavin is considered to be at a 1-3 month age level. He is unable to sit or roll over on his own, and it is uncertain whether he will ever be able to do these things.
Gavin is legally blind, which they also attribute to the stroke. He has a pacemaker due to heart block and a G-tube for feeding, due to aspiration into his lungs. Gavin gets all of his nutrition through the G-tube. Cardiac wise, he is doing well for now. Although, he does have a Mitral valve leak in his heart that surgeons were unable to repair. Some day he may need a Mitral valve replacement, but surgeons like to wait until children are at least 10 years old, if possible, because they do not make an artificial valve that fits well into such tiny hearts.
Gavin may never be able to sit up, walk or talk. But, he is able to smile, show love and give love. Our family counts Gavin as one of our biggest gifts from God! We have been blessed by having Gavin in our lives and are proud of our little guy! We thank you for your prayers! "Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus." Plilippians 4:6-7
Matt and PJ are expecting their second son, a baby boy, and they found out a while back, around December or January, that the top of baby Seth's skull and brain had not developed, and he is only given until birth or maybe a few hours or days after he is born to live. They took the news really hard, as anyone would, and are praying for a miracle. They recently had another ultrsound and got some positive news. The doctor said that the baby was moving around perfectly, but they never got to see the top of the head. He is due April 16th and we are all hoping and praying for a miracle, or at least that God will grant Matt and PJ peace and acceptance.
UPDATED: FEBRUARY 2010
1. Please pray that Mikan's airway continues to heal so that he may be able get his trach removed this summer without major surgery.
2. Mikan also is having problems with his g-tube stoma. Please pray that it heals enough so that it doesn't hinder the rest of his development.
1. Mikan is learning to communicate by using sign language! He knows over 100 signs!
2. He is also finally cruising around the furniture with ease and tolerates being capped during all waking hours.
Mikan was born via C-section in South Bend, Indiana on March 5, 2008, weighing in at 1 lb, 12 oz. He was 28 weeks gestation, but had been living inside the womb for 2 1/2 weeks after my water broke (I was on bedrest at the hospital). There was no known reason for his early membrane rupture. Mikan spent almost all of his 141 days at the NICU on a ventilator. He went home for 2 weeks, then returned to the PICU for another 6.
He was diagnosed with laryngomalacia when he was 3 months old and had a tracheostomy soon afterward. He had several other surgeries while in the hospital including a PDA ligation, corrective laser eye surgery for Stage 3 retinopathy, a hernia repair, and a g-tube placement and Nissen wrap.
Today he is thriving at home, but still breathing with the aid of a trach (we just ditched the vent!), and we are still using his g-tube as his primary source of nutrition. Mikan's prognosis is good. He has chronic lung disease, but we are praying for his continual improvement with time. He has a scope on June 29th where an ENT will check the status of his upper airway and then either remove some obstructions if they are small enough, or take pictures and refer him to a specialist for an airway reconstruction surgery. We are constantly amazed at his pleasant temperament despite all of the discomforts in life he could complain about. Mikan's favorite activities are reading Baby Touch and Feel books, trying to grab the remote or phone when we're not looking, and playing in his Johnny Jump Up. He is developing a beautiful personality, and we thank God every day for his presence in our lives.
1. That she will make improvements in speech
2. Her kidney reflux will heal
3. She continues to grow
4. Her physical limitations will continue to improve
Lillian is swallowing very very small bites of food in very small quanitities.
After many surgeries and time her trach site is closed
She was born to us as our fifth daughter. We anxiously awaited her birth and due to complications with Mommy, Lillian came into the world a little over 3 weeks early. It was immediately obvious that she was in distress. She was unable to breathe or keep her oxygen levels up. She was quickly transported to our Children's hospital in Indianapolis. She was on a vent by the next afternoon and we were told she was suffering from Pierre Robin Syndrome and Pulmonary Hypertension (high blood pressure in the lungs) Genetic tests were ordered and something new developed hourly. Her heart and kidneys had defects as well. By December 5th, we were taken to a room and told our daughter would need a trach tube to breath, she would need major heart surgery and she also had a rare chromosome defect. She has a deleted portion of chromosome and a trisomy that are intertwined. We were told that 70% of children with her deletion died by age 1 or 2. They did not know how her life would play out since she had a complex case. She also has a cleft palate, overlapping toes and some facial features that are common with the genetic diagnosis. She also suffers from a brachial plexus palsy in her left arm due to some of the complications of her birth. Her story continues in the pages of her diary. We covet your prayers for her well being and our family. We are so blessed to be Lillian's parents and know God has a perfect plan in all of this.
"Your eyes have seen my unformed substance; And in Your book were all written The days that were ordained for me when as yet there was not one of them." Psalms 139:16
1) He will remain pneumonia free
2) His acid reflux will resolve on it's own and he wont have to have a Nissen wrap (another surgery)
3) Continue to get physically stronger
4) Become vocal again, he has become very quiet lately
5) Become strong enough to drink liquid and someday come off of his feeding tube!
1) Nathan can roll over from his stomach to his back on his own.
2) He can eat purees. He loves to eat!
3) He has made it through the sick season so far without many respiratory issues.
Nathan was born April 21st, 2008 via c-section at Silverton Hospital in Silverton, Oregon. We were expecting a healthy boy, but we would soon learn differently. Immediately we noticed the immense amount of thick, black, hair on his head, back, and shoulders in addition to a pointy nose, a crooked right thumb (which we thought was broken) and the fact that he couldn’t cry. After a short time, Nathan went into respiratory distress and was immediately put under an oxygen tent. For the next thirty-six hours we couldn’t get Nathan to feed and he needed continuous oxygen. At the recommendation of my Obstetrician, we requested him to be transported to Oregon Health and Sciences University. As the specialized transport team (PANDA) from the hospital came to stabilize him for transportation, it was clear to us that there was something very wrong with Nathan, but we remained optimistic. Shortly after his arrival at OHSU, Nathan was visited by a doctor of genetics and given the diagnosis of Rubenstein-Taybi Syndrome. Of course, we questioned it right away because I had so many ultrasounds and blood draws during my pregnancy and nothing was ever detected. The geneticist told us that Nathan had all of the characteristics of Rubinstein-Taybi Syndrome; broad flat thumbs, pointy nose, excessive black hair, high-arched pallet, undescended testees, respiratory problems and more. Although it was difficult to come to terms with (and still is, at times), we accepted his Diagnosis and began investigating treatment. After only a few days in the Neonatal Intensive Care Unit, the nurses taught Nathan how to suck and swallow, and he began to successfully feed by mouth. After a short bout with jaundice we were discharged and instructed to follow up with a list of specialists. Despite all that Nathan has had to deal with, he is a strong, happy little boy. He loves his two and a half year old sister to pieces. If we ever get worried that Nathan can't make noise, we bring his sister into the room and he just laughs and laughs for her.
1. Enough growth in the next few months to make her a good candidate for airway reconstructive surgery.
2. That she is able to have the surgery and have her trach removed for good before Fall 2010.
3. Strengthening in her hips and legs to help with hip dysplasia.
4. Progress in learning how to eat by mouth.
5. That we are able to enroll her in school this Fall.
1. She has such a bubbly personality and when she is in a group, she is definitely not shy and steals the show!
2. She has not been really sick in a year. She is able to fight whatever she catches and it no longer goes directly to her lungs.
3. She knows about 200 signs.
4. She can speak about 100 words.
5. She has such a great capacity to learn new things, she is like a sponge!
Marissa was born on March 13, 2007 after a complicated pregnancy. She was born with a PDA (heart valve that did not close) and had to have surgery when she was three weeks old to correct it. We knew of many of her issues before she was born but the one that took us by surprise was her breathing problems. As soon as she was born we noticed she had trouble breathing and even squeaked (stridor) when she breathed in. She was intubated immediately after birth. She spent nearly two months trying to get off and stay off the ventilator to no avail. It was determined she was having problems breathing due to her small recessed lower jaw, subglotic edema (swelling) and tracheomalcia (floppy airway that would collapse on itself). It was finally recommended that a tracheostomy be placed. She had her trach placed on May 9, 2007. Because she had lost her natural ability and desire to eat by mouth because of the vent tube, she was also given a g-tube at the same time.
Marissa has no primary diagnosis other than "multiple congenial anomalies" She has several issues other than her breathing and eating, all of which affect her life to varying degrees.
After 2 1/2 months, we were able to bring Marissa home from the NICU on May 31, 2007. Luckily, she has only had two hospitalizations since then, both for aspiration pneumonia. With the help of family, friends, home therapies and a team of great doctors, she is thriving beyond anyone's expectations or dreams. She is a spunky little girl and is the light of our lives. She has the uncanny ability to make anyone who meets her fall in love with her immediately. We love her so much and thank God everyday for the blessing He has given us in her.
He was born full term, but had a loud gurgle for start. At night it sounded like he was gasping for air. They told us for two months that it was reflux. They finally sent us to the ENT and she found that he has severe laryngotrachealmalacia along with reflux. They put him in the hospital to do surgery and then decided to hold off and see if he will outgrow it. In addition, he is developmentally delayed and now has hypotonia. We had an MRI and it is normal. However, they think he has a muscle disorder so we are waiting to get into a Molecular Geneticist. He has to have three surgeries that we are aware of right now. The first one is Dec. 3rd.
UPDATED: June 09
Ava's main diagnosises/problems are Cerebral Palsy, Laryngomalacia, Tracheomalacia, Petit Mal seizures, Macrocephaly, Hypotonia, repeated Cyanosis, Syndactyly, Ataxia, Reflux, breath holding spells and some other anatomical airway defects. It seems like we're finding more things wrong with her at each appt.
We recently switched medical teams so that she could be treated by the Aerodigestive Team in Cincinnati. Ava will have airway reconstruction later this Summer. She'll see the Feeding team, as she still cannot eat most purees or solids and she hasn't gained weight in over 3 months. Genetic testing will be done also since it is believed she has a syndrome.
Ava has PT, OT, and will have ST for feeding. She cannot support weight on her arms or legs. We're working hard on learning to crawl. She was casted for her DAFOs and will get knee extensions for them too.
1. Airway reconstruction goes well and is a success
2. That she quits turning blue and passing out
3. No more seizures
4. Her muscles get stronger
5. We can get her off steroids
1. Her Tracheomalacia is looking better as of her last bronchoscopy
2. She has no intellectual delays
3. She's a very happy baby
4. As of now, she does not need a Nissen
1.Healing for Christine as she deals with other moms who have babies around Micah's age and/or that are pregnant and have no problems.
2.Direction as to where God would have them go with their family. Do they try for another or adopt.
It starts with Zane, our miracle. He was born at 29 weeks because I was pre-eclamptic. He is 3 now and doing great. When we got pregnant with Micah, we knew that we wanted to do a home birth. So we found a wonderful midwife and she was aware of my history. We did everything to try and prevent it, which we thought we were. There were no signs of pre-eclampsica. When we got to 30 weeks were were exstatic. We made it to 36 weeks and were clear to have a home birth. We had our home visit on Jan 10, my blood pressure was high and proteins off the charts. So we started natural induction. They came back on the 11th and Micah's heart rate was 140 I was looking good. Then when they came back on Jan 12 there was no heartbeat. So we went to the hospital and had Micah on Jan 12, 2008 at 5:02 pm. He was 3 lbs 10.5 oz. It is believed that I had pre-eclampsia the whole third trimester. This was unexpected and so there were many things that I wish we had but did not.
UPDATED: MAY 2010
1. That she will continue to take steps towards development in all areas
2. That we will find the right answer to her continuing reflux issues
3. That she will get stronger and stronger at holding her head up for longer periods of time
4. That we find the right choices towards Isabelle's schooling needs
1. The she has started smiling more.
2. That she has become so much more content than we ever expected
3. That she is sleeping better through the night
4. That she has taught us so much in such a short time
5. That her little brother Wesley is starting to recognize her and attempts to interact with Isabelle more
6. That our family has been blessed and enriched by having her a part of it
UPDATE: AUGUST 2009
MARIE ISABLE SCHLACHTER
March 3rd 2007 - August 28th, 2009
Marie was born March 3, 2007 in Holyoke to Lucas and Shannon Schlachter.
She was diagnosed with a debilitating neurological mitochondrial disorder early on but that did not define her.
Marie was a lesson in faith, joy, and hope and she bettered the lives of everyone who knew her.
Her final days were not spent suffering but in swinging, eating ice cream, and being with her family.
A memorial fund has been set up at First Pioneer National Bank. Memorial contributions will be divided between Eli’s Angels and Hospice of the Plains.
Please Continue To Pray For This Family As They Begin The Healing Process
UPDATE: NOVEMBER 2010
Overcomes fear and starts walking on his own.
Continues to learn how to communicate.
Continues to stay healthy and strong. No hospital addmission for sickness since November 2007! (fear for momma remains)
Will be off feeding tube completely
PDA closer was success
Testis were found and brought down.
Continues to eat more and more by mouth and feeding himself some:)
Alex was born an 8lb 1oz baby boy. He had trouble breathing from the get go, and suffered from pulmonary hypertension. He was in the NICU for 6 weeks, and there he was diagnosed with Rubinstein Taybi Syndrome. This little boy who doesn't speak has taught me more in the last year than I have learned in my life time. I'm so excited to be his momma.