Are You Interested In Participating?

I am writing to ask if you would be interested in a project called, Exceptional Family TV which is scheduled to launch in the Spring of 2010. A good friend and special needs parent is the senior producer with Warm Springs Productions (www.warmspringsproductions.com), and he will be directing/producing and hosting this internet based show which will air as weekly episodes. EFamilyTV has partnered not only with Warm Springs Productions but also Bridgeworks Creative for the marketing/web design and EP Global Communications whose website www.eparent.com receives over 1.3 million unique hits per month from the special needs community. EP Global Communications publishes Exceptional Parent Magazine among many other services they provide to this community.

These companies are all partnering to create a tremendous website destination to "webcast" these weekly episodes focusing on the reality of families raising children with special needs. A few of the elements we will be offering are an integrated social networking platform, forums/blogs, and ecommerce marketplace for special needs products such as clothing, toys, travel, equipment, etc. Warmsprings productions has just launched with basic information, and they will be adding elements each month beginning January 2010, with a full launch scheduled for May 1, 2010.

EFamilyTV will be covering a variety of topics. Nathan will visit with families all over the world and talk with them about the reality of their daily life. Covering issues like how they dealt as a family when their child was diagnosed, daily scheduling, how they deal with the stress it puts on the marriage, siblings, therapies, insurance, death etc. They will share their stories of what they have found to be helpful and what has not worked.

Beyond that, he will be covering other topics like special needs organizations, nutrition, GFCF diets, travel ideas that would include both the special needs child and the typical siblings, new technology, talking with various specialists about a multitude of diagnosis and sharing the information, support and news with these families online.

They are scheduling out production shoot dates for 2010 and I was wondering if anyone would be interested in partaking in this in wonderful event! If this is something you think you'd be interested in or think you know of someone that would be please e-mail me!

Blessing to ya all!

Zach Fights Back!

CLICK HERE FOR MORE DETAILS ON ZACH'S FIGHT

if you can find it in your heart to help donate to this worth cause.. Your part only $25.00!

What a blessing it is to bless others and lend a helping hand!

PRAYER CAUSES THINGS TO HAPPEN

Grown Her Wings & Flown Home

Marie Isabel Schlachter woke in Jesus’ arms on August 28, 2009
finally being fully healed from her battle with Leigh’s Disease.

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.

CONGRATULATIONS ZACHARY!!!

SYNOPSIS OF NEED
While our health insurance helps pay for some of Zachary's medical and therapy needs, it does not help with all and we are left with a huge financial burden to get him the care he needs. At the end of 2008, I added up all his medical costs that we were responsible to pay and it added up to about $25,000 - that was after insurance covered their part. Zachary utilizes PT, OT and Speech Communication, which has helped him, but we would like to get him more care. It's a struggle for any family with a child with special needs to provide the high dollar care they need for optimal success in life independence. We are looking to enroll him into the Colorado Center for Conductive Education in Loveland which will cost approximately $2000 for the semester. It's an intensive therapy program that has shown tremendous results in other children with CP. From the research and results given for Hyperbaric Oxygen Treatment (approx $10,000 for 40 sessions), we believe Zachary could benefit from experiencing 100% Hyperbaric treatments, which could lessen his spasticity and may help him walk better. There is also a treatment in Germany, which would extract bone marrow from Zachary's hip, cultivate the stem cells from that bone marrow and re-inject them into his spinal cord - stem cell treatment is cutting edge and has shown results of improved movement and muscle control in people with brain injury. Through all of Zachary's treatments and progress, he has been an inspiration and a source of hope to others - he is full of joy and love and we are raising him to make a positive impact on all those around him.

GOAL
$10,000 for 100% HBOT therapy - 40 sessions coupled with intensive therapy at a Wisconsin HBOT center
$5,000 for Conductive Education

IF YOU ARE INTERESTED IN SUPPORTING THIS NEED PLEASE SEND YOUR DONATION TO:

Zachary Charlan Benefit
PO Box 740115
Arvada, CO 80006-0115

AUGUST THROUGH DECEMBER 2009

ALYSSA

UPDATED: AUGUST 09

Alyssa's Blog Site

PRAYER REQUESTS
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.

PRAISE REPORTS
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'S GLIMPSE
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.

JOSHUA

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

UPDATED: JUNE 09

PRAYER REQUESTS
Nathan is doing well (symptom-wise) on the new chemo treatment for his brain tumor. This one doesn't make him nauseous. As of the last scan, the tumor hasn't grown, but is slowly shrinking. He's showing a lot of improvement in learning to read and write. For the tumor to continue to shrink, and that the cysts, which the doctor suspects in the area of the tumor, would not grow (which would require another brain surgery to drain). Please pray for provision for all the medical needs and that Nathan would grow in wisdom, and stature, and in favor with God and man.

PRAISE REPORTS
Nathan's tumor has shrunk by about half of what it was in September, and he is tolerating his new chemo well. Since Sept. he has grown in his knowledge of the Lord, and has improved so much in learning to read and write.

NATHAN'S GLIPMSE
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.

ANNABEL

UPDATED: JUNE 09

PRAYER REQUESTS
1. That Annabel's surgery will do the trick it needs to
2. That we are able to get a sleep study sooner than August
3. That she stay infection free and not need any antibiotic

PRAISE REPORTS
1. Overall, praise God for all He has done concerning her surgery
2. That the epidural kept her from taking too much pain medicine
3. That her airway was not a problem with this surgery
4. The success of the surgery

ANNABEL'S GLIMPSE

God has blessed us greatly with our family. Little did we know a little over 3 years ago, He would send us an angel named Annabel. Annabel was born with Trisomy 18, meaning "incompatible with life". Her diagnosis is also called Lethal with only 5-10% surviving to see their first birthday. Trisomy 18 affects most of the major organs is some way. With Annabel, her breathing is impaired, she has a hole and valve problem with her heart, neurogenic bladder and bowel, GI issues, developmental delays, sensitivity to sunlight, etc. With all this said, she is the most beautiful child we could have imagined. Annabel was brought to us through adoption. We never expected to have this much time with her and are so grateful. She is small for her age and many comment that she looks like a porcelin doll. Her feature are so beautiful. She truly doesn't ask much of life. She wakes each morning full of happiness and joy. She is our constant reminder of God's Greatness! Thank you for keeping her in your prayers. With such a fragile child her needs are more some day than others.

ABIGAIL GRACE

ABIGAIL'S BLOG SITE

UPDATED: JUNE 09

Abigail continues to do well. Her seizures have remained consistent 5-10 per day even with a new increase of meds. Since she has been on the Sabril for a little over 4 years it has begun to effect her vision in good eye. She no longer tracts things like she used too. Since she has not been going to school, she is not getting her much needed therapy. I have noticed a decline in fine motor skills.

PRAYER REQUEST
1. That her seizures would stop completely
2. That she will one day sit all by herself (we are up to 5-10 seconds before she begins to fall)
3. That our insurance would approve PDN so Abby can leave the house with a nurse in order to go to school for therapy!
4. She has a sti on her right eye that has been persistent for the last 3 months that will not go away no matter what. It is very painful.
5. That she be o.k. while we are out of the country this coming July.
6. That she does not loose her vision in her only good eye due to the meds.

PRAISE REPORT
1. She has begun taking a few steps in her kid walk and is tolerating it better
2. She is healthy and more vibrant
3. She is giggling more now!

ABIGAIL'S GLIMPSE
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.

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!

ZACHARY

UPDATED: JUNE 09

PRAYER REQUESTS
1. Prayer for trunk strength so he can sit up on his own
2. That he'd be able to communicate clearly with words soon
3. Safe adenoid-removal surgery
4. Fundraiser idea plans would come together to help raise money to offset all his medical, therapy and wheelchair costs; that we'd be able to raise money for conductive education for him; that we'd be able to raise money for 100% hyperbaric chamber therapy for him.
5. That he would be able to walk, talk, sit up on his own very, very soon.

PRAISES
1. Zachary is taking better and more steps with supportive assistance.
2. He continues smiling and laughing and is a blessing of a boy.
3. God has gotten us through this far and taken care of Zach's needs.

ZACHARY'S GLIMPSE
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.

EMMA

EMMA'S BLOG SITE

UPDATED: APRIL 09

Emma is hanging in there. She isn't walking or very mobile at all now. She rolls from back to front and vice versa on occasion, and that's about the extent of her movement. All of her food is pureed, and her drinks are thickened with drink thickener. She is on medication for reflux now as well. She turned three March 1, so she started with the public school system. We like her new teacher(s). We opted for homebound for her since change seems to be difficult for her to handle. She also receives OT and PT at home. She doesn't have much vision, if any at all, but her hearing is still good. She started coughing the other day and has a little conjestion, so pray that goes away soon.

PRAYER REQUESTS
1. She isn't walking much on her own, so pray she isn't frustrated.
2. She's not chewing well, so pray she doesn't choke or aspirate.
3. As she continues to loose milestones, pray for her comfort and peace, as well as ours. It's hard to watch your baby regress.

PRAISE REPORTS
1. Emma hasn't had any seizures since her new med was added a few weeks ago!
2. She still smiles and laughs sometimes.
3. She loves music.
4. She works hard at therapy.
5. She's sleeping mostly through the night.
6. She loves and recognizes the voices of all her friends and therapists.

EMMA'S GLIMPSE
Born a perfectly normal baby girl, Emma developed just like a normal baby would. She laughed, clapped, climbed, ran, made efforts at talking, played, and lived a happy baby life. When she was around 18 months, we noticed Emma wasn't talking like she should. She literally had two words to her vocabulary. We would later discover she had fluid on her middle ear and needed tubes. Unfortunately for Emma, the tube surgery did not fix the problem. After evaluations with Early Childhood Intervention, they found she was a year or so behind developmentally, and began therapy to try and get her developmentally "caught up." Emma began having seizures and falling frequently about a month or so later. After taking her to the neurologist, and many tests later, he discovered she has a rare neurological, degenterative, genetic disorder called Infantile Neuronal Ceroid Lipofuscinosis (INCL), or Batten Disease. INCL a fatal disease characterized by loss of muscle tone, myoclonic jerks or seizures, blindness, loss of motor and cognitive function, poor circulation and digestion, with a life expectancy of approximately 3-5 years of age. The infantile type of NCL is the most rapidly progressive of the diseases. We have seen a rapid decline in Emma just in the past couple of months. Thank you for your prayers of physical comfort for her. We are praying for a miracle healing here and now for our sweet little angel, but understand at the same time that God may have a different plan.

GAVIN

PRAYER REQUESTS
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.

PRAISE REPORTS
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'S GLIMPSE
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

Baby Seth

I just received a request for prayer for this family. Please keep them in your prayers as they journey this road and await to hold Seth on April 16th.

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.

MIKAN

UPDATED: JUNE 09

PRAYER REQUESTS
1. That God heals Mikan's upper airway. If his granulation tissue and scar tissue doesn't heal by the end of this month, Mikan may be facing a major surgery: airway reconstruction. This obstruction is also preventing him from using the Passy Muir Valve, which mean he doesn't make any noise anymore.
2. That Mikan begins to tolerate his secretions better. His gagging and wretching is one probable cause of his disinterest in eating anything by mouth.
3. That Mikan's vision doesn't deteriorate too badly as his eyes grow. Right now he is very near-sighted, and we've been told it will only worsen as he grows because of his ROP.

PRAISE REPORTS
1. That God heals Mikan's upper airway. If his granulation tissue and scar tissue doesn't heal by the end of this month, Mikan may be facing a major surgery: airway reconstruction. This obstruction is also preventing him from using the Passy Muir Valve, which mean he doesn't make any noise anymore.
2. That Mikan begins to tolerate his secretions better. His gagging and wretching is one probable cause of his disinterest in eating anything by mouth.
3. That Mikan's vision doesn't deteriorate too badly as his eyes grow. Right now he is very near-sighted, and we've been told it will only worsen as he grows because of his ROP.

MIKAN'S GLIMPSE
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.

LILLIAN FAITH

UPDATED: JUNE 06

PRAYER REQUESTS
1. Transition to new Children's Hospital goes well
2. Vomiting stops and feedings can go back up to normal
3. Ears stay clear
4. Move to new home is not traumatic for her
5. Will have success with new docs
6. Decannulation process can begin and be successful
7. Decisions regarding starting school
8. Transition with new therapist will be good
9. That Lillian can start eating by mouth

PRAISE REPORTS
1. Palate surgery complete 5/19/09
2. Feedings are getting moderately better
3. Off oxygen for the time being
4. Wearing PMV pretty successfully
5. For each and every day I have this sweet Angel here with me!

LILLIAN'S GLIMPSE
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

NATHAN

PRAYER REQUESTS
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!

PRAISE REPORTS
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'S GLIMPSE
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.

MARISSA

PRAYER REQUESTS
1. Upcoming kidney surgery on Jan 22
2. Quick recovery from kidney surgery
3. Continued progress in her development
4. Progress in learning how to eat by mouth
5. Possible decannulation (taking the trach out) this spring or summer

PRAISE REPORTS
1. She is walking and almost running everywhere!
2. She knows 35 signs.
3. She can speak 5 words clearly and attempts to say everything else.
4. She has developed a wicked sense of humor that keeps us laughing and a fiery personality that keeps us on our toes.

MARISSA'S GLIMPSE
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.

MITCHELL

PRAYER REQUESTS

PRAISE REPORTS

MITCHELL'S GLIPMSE
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.

AVA

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.

PRAYER REQUESTS
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

PRAISE REPORTS
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

MICAH

PRAYER REQUESTS
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.

MICHA'S GLIMPSE
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.

WESLEY

PRAYER REQUESTS
1.  That Wesley’s surgery will go smoothly without any complications
2.  That he will only be on the oxygen for a short time
3.  That he will stay healthy this winter with such weak lungs

PRAISE REPORTS
1.  That he is finally home
2.  That his needs are small
3.  That our family has been blessed with such a wonderful little peanut

WESLEY'S GLIMPSE

Isabelle’s brother, our son Wesley, was born 9 weeks early due to having the umbilical cord wrapped around his neck. He was 2 lbs. 10oz. Although he too was very small just like his sister, we were told that it would be a whole different ballgame because he had 3 extra weeks in the womb. Overall our NICU stay was much calmer. Wesley’s biggest struggle was and still is his lungs. He has been diagnosed with having Chronic Lung Disease and is still on oxygen. This in turn made him eating from a bottle a bit of a challenge. We spent quite a few weeks in the NICU trying to find a way to help Wesley bulk up and get extra calories so he wouldn’t wear out so quickly while eating. We finally figured it out. After 84 days in the NICU, Wesley was discharged. Aside from following up with a pulmonary doctor for his lungs, we will also be seeing a urologist for a swollen kidney and a bilateral inguinal hernia which he will have to have surgery on very soon. Even though Wesley too has some special needs, he has been such a blessing to us already. Having both Wesley and Isabelle in our lives has taught us to not pray for challenges equal to our strength, but to pray for strength equal to our challenges.

ISABELLE

PRAYER REQUESTS:
1. That one day she will be able to smile
2. That she will stay healthy this winter
3. That she will continue to take steps towards development in all areas
4. That she will learn to handle her secretions better

PRAISE REPORTS:
1. That she has become so much more content than we ever expected
2. That she is sleeping better through the night
3. That she has taught us so much in such a short time
4. That our family has been blessed and enriched by having her a part of it

ISABELLE'S GLIMPSE

Our first born, Isabelle was born 12 weeks premature. She weighed 1 pound 14 ounces She really did well her first few weeks of life. Then one day the doctors called and said it appeared that she might be coming down with an infection. Isabelle had come down with an intestinal infection which resulted in her losing 1/3 of her small intestine and all of her large. During the time of her infection, Isabelle's blood pressure plummeted causing the doctors to administer many strong medications at one time. These two occurances in turn caused there to be severe bleeding in her brain. We have been told Isabelle may never be able to walk, talk, feed herself, or even sit up on her own. Isabelle spent 6 1/2 months in the NICU. In that time, she had 3 surgeries all on her intestinal area and also had a G-Tube placed. Even though Isabelle has shown significant delays, her dad and I still find joy in celebrating all the tiny steps she has taken. God has taught us so much already including the true meaning of unconditional love and the power of prayer. She is one of the greatest gifts given to our family.

MARIE

PRAYER REQUESTS
1. Strength through cold and flu season, prayers that Marie not get sick!
2. That she remains able to cough as strong as she can now.
3. That she not aspirate.
4. That she remain comfortable and full of joy.

PRAISES
1. We've made it through two colds without any ill effects so far!
2. Her teeth are coming through and not causing any increase in her movement disorder "episodes"
3. God has given us smiles and giggles, we never thought we'd see them again.
4. We are at the moment wrapped up in being grateful for the Grace from an Awesome God!

MARIA'S GLIMPSE
Marie Isabel was born March 3, 2007. She arrived right on time, on her due date and her arrival was much hoped for by her mother, father and sister. Marie kicked so hard in utero that everyone was certain she was a boy, everyone but big sister Josie who knew with no uncertainty that she was going to have a sister. Weighing it at 7lbs 15 ounces and 20.25 inches tall we brought home our dark haired girl and settled into a deliriously happy existence. All went well, Marie developed normally until 5 and half months. At this time she started showing an intentional tremor, most noticeable when eating, playing or crying. We met with the neurologists on October 16, 2007 at The Childrens Hospital in Aurora, Colorado. We were admitted to the hospital that day through emergency and in the days that followed we were mis-diagnosed with a form of cancer. A CAT scan didn't show the tumor that they believed was there and from there we met with the metabolic doctors. Marie's MRI showed lesions in her brain and they gave Marie the diagnosis of Leigh's Disease, on of many Mitochondrial Disorders.
In December, 2007 genetic testing found the mutation in Marie's Mitochondrial DNA. Almost 100% of the cells in her blood are affected in Complex I of the cell's respiratory chain, this means that they cannot produce energy efficiently enough to sustain her. Marie suffers from a severe energy deficiency. She currently is still eating orally but struggles and gets the majority of her nutrition through a g-tube, though she still nurses a bit and almost always when she is on her feeding pump leading her to believe she is the best nurser ever. She cannot roll over or hold her head or sit up. Physically she is much like a newborn. She is filled with pure joy, and it a treasure to be around having taught us so much in her short time here. We're not sure what the future holds for her, but try to spend our time grateful to have her with us and not thinking of what will come, simply enjoying each moment. The doctors tell us her brain will continue to deteriorate and there will be complications due to her loss of motor control, eventually leading to her brain no longer sending the message to her body to breath. So far, she's surprising them at every turn.

ALEX

ALEXS BLOG

UPDATE: April 13th, 2009
I"M CRAWLING NOW!!!!!

PRAYER REQUEST
1. They will find both testes and be able to bring them down
2. Make the right decision about surgery on his thumbs
3. Stops losing weight
4. PDA still manageable

PRAISE REPORTS
1. Kidney reflux is gone, hes not refluxing and throwing up as much
2. Pooping a lot!!!!
3. Tolerating feeds during the day, no more milk at night!

ALEX'S GLIMPSE
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.