Fearfully and Wonderfully Made

Psalm 139: 13-18
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you…Your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.


In the fall of 2006 we found out that we were expecting our third child. The pregnancy went pretty well, despite extreme morning sickness. The sonogram looked great and we found out that we were having our third boy!

On April 17, our third son, Brayden, joined our family. The day after he was born, concerns about the size of his head were expressed. His head was extremely small; it did not make it on the growth chart. Tests were done for exploration. He appeared to being doing well, we thought all of the tests were precautionary and everything was fine. Brayden had a head ultrasound and it revealed that he was missing part of his brain and had additional abnormalities. The ultrasound could not provide a clear picture and we were instructed to schedule a MRI to review his brain in further detail after he was three months of age. Thankfully Brayden was nursing well and he was able to come home with us.The next few months were filled with tests and specialists. All of his major organs needed to be checked to rule out additional complications. We saw just about all of his insides, all of which were functioning and doing well. The big test was the brain MRI. The MRI revealed that Brayden’s brain was missing parts and the rest was abnormal. Today we are still learning what all of this will mean for his life.



Brayden struggles with seizures and we try to regulate them with medication. He is severely visually impaired. Brayden has a G-J tube and is feed by j-tube (into his intestines) for about 20 hours a day. He struggles with chronic vomiting and we have been in and out of the hospital for it...alot. But at home we pump his stomach, by a big suction machine, several times a day for about 30 minutes. Developmentally he is close to a newborn. He cannot hold his head for more than a few seconds. He needs constant full support.

Brayden sees a list of doctors and specialists on a regular basis: neurologist, ophthalmologist, occupational therapist, physical therapist, feeding therapist, vision therapist.

One of the big questions is his condition, handicap, label, etc…Well, it all depends on which doctor we are seeing and what part of his body that particular doctor is looking at. Brayden has a lot of things going on and here is what we have figured out so far (don’t worry if you have no idea what the terms mean, you can google). We have learned that the doctors, therapists, and insurance use these fancy labels to get Brayden services, treatment or therapy but not one single term describes Brayden.

· To the neurologist: ACC, seizure disorder, cerebral dysgensis, microcephaly, pontocerebellar hypoplasia
· To the occupational and physical therapists: cerebral palsy, developmental delays, mixed muscle tone
· To the ophthalmologist and vision therapist: visual impairment, optic nerve hypoplasia
· To the GI doctor and feeding therapist: feeding difficulties, G-J tube, chronic vomiting

Brayden has a a lot going on and we are still trying to understand what all of this means. Thus my journey is understanding it all.

A list of Brayden's diagnosis:

Brain
Agenesis of the Corpus Collseum (ACC)
Microcephaly
Seizure disorder – partial complex seizures
Cerebral dysgensis
Pontocerebellar hypoplasia
Cerebral palsy
Nonambulatory

GI
G-tube, mickey button since April 2008
G-tube replaced with G-J tube Sept 2008
Delayed gastric emptying
Chronic vomiting
GE reflux

Eyes
Visual impairment
Optic nerve hypoplasia

Read more about Brayden and his mom, Carrie, on their blog.

odd girl out...?

A compilation of writings by Beth Grebe of Odd Girl Out...?

I married my high school sweetheart and the best man ever, in the whole world, Jake, in 2000.

We have been married for almost 9 years, and in that time, have created 4 wonderful beings:

Jake II (7 1/2), Pete (6), Betsy (4 1/2), and Rosie (2). What can I say? We work fast! I had very typical pregnancies with the boys. A little morning sickness, a little back ache, a little leg cramps, just the usual stuff. I had beautiful, natural deliveries with them. Things were wonderful. In November 2003, I got pregnant for the third time, just as planned. Almost as soon as I found out I was expecting, I was pounded with horrible morning sickness. It got so bad, and lasted for so long that I got IV fluids and was offered a Zofran pump if the oral variety didn't work. Luckily, it did, well, at least so I could function on some level. About 4 weeks before my due date, I found out that my little peanut was breech. I did not want to try a version due to the risks involved to the baby, so, a c-section was scheduled. I was very nervous.

In August of 2004, I gave birth to my third baby. A beautiful girl, our first girl. She weighed a healthy 7 lbs. 7 oz.

She had great apgar scores, all in all, a normal Cesarean delivery. She came into the world with a loud cry and pink skin. While in the hospital, we discovered that she had pretty severe reflux, and lost more weight than usual. But, all in all, nothing that required further hospitalization, and nothing we couldn't handle. We named our sweet girl, Betsy Jane. I felt high on life. Each and ever birthing experience is quite spiritual, and this was certainly no exception. I was relieved to put an end to a pregnancy riddled with severe morning sickness, complete with iv fluids because I could stomach nothing else. But it was all worth it, at that moment in August, when they placed her healthy, little butt in my arms.

Betsy was such a GREAT newborn. She ate well, slept as much as a breast fed infant sleeps, and was loved by all of us so much. A little girl was such a new experience for me, and I loved it.

The following months were a blur of nursing, two active toddler boys, nursing some more, and reflux, yet another first for us. When Betsy was not quite 4 months old, I started noticing little things that bothered me. She made no attempts to move; no head movements or rolling attempts. She also didn't appear to have reflexes that many new babies have. She would smile, but did not visually attend to anything. I said something to my husband. His response was, "Don't worry, all babies are different." I knew this all to well, being a Speech-Language Pathologist before becoming a mom, but my worries were not sitting well. I had a gut feeling something wasn't right. My mommy intuition was kicking into overdrive. I discussed it with my mom, and she agreed that there were "things" that worried her. How could this be? She was healthy, ate well, was growing. What could be wrong? What were we missing? Why had it taken so long for us to know?

At the 4 month check-up, my fears were not put to rest, but rather I was told the DOCTOR would make Betsy an appointment with a pediatric neurologist. The doctor left, after handling me with the utmost care, and when he returned I was told the neurologist would see us in 2 weeks. Fast forward through the second worst wait of my life (more on the very worst later), the neurologist confirms there is a significant delay. "I propose some initial tests that I would like done as soon as possible. Can you drive down to Children's Hospital this evening to get started?" Whoa, slow down!

What followed was months of diagnostic tests and questions about my pregnancy (including about 3,678,878,293 people asking me if I drank or used drugs while pregnant. Uh, no and no). We saw geneticists, eye doctors, orthopedic surgeons, the neurologist. It was a whirlwind to say the least. Every procedure included anesthesia because of her low tone, even her MRI. And at the end of those months of testing, Betsy had no diagnosis.

Betsy received in-home speech, occupational, visual, physical, and play therapy until she was 3. Then, she entered the St. Louis County Special School District. She goes to school four mornings a week, and gets all of her therapy there. We love all of Betsy's therapists (past and present), teachers, and doctors. They have made this journey much more bearable. Betsy wears glasses for near sightedness, wears ankle braces, has recently begun using an augmentative communication device, and, until recently, used a reverse wheeled walker. She miraculously started walking on her own in August of 2008.

It always seems that just when I am about to crawl into a hole, Betsy ups her game. I never give up on her, but often times, seem to give up on myself. I love Betsy in a way that only others with "not typical" children would understand. It is full and pure. I love all of my kids so much, I would give up my own life for them, but with Betsy, it's just a bit different, because she needs that. There are days when I feel defeated, broken, like that grieving stage is creeping back into my heart.

I did grieve when we first learned of Betsy's prognosis. It may seem selfish to some, but it's just me being honest. I grieved for the loss of the child I thought I had, I grieved for the life I thought Jake and I would lead once all of our birds left the nest, I grieved for an end to a world I had once known, and I grieved for her and all of the things she would never be able to do. Sometimes, when I think about some of my emotions back then, I think I was being so silly. God gave this wonderful gift to Jake and me, and our other children. I laugh to myself because she has impacted so many people's lives. I know my friends and family will never be the same. She has changed their internal wiring and made their hearts grow bigger and BETTER. We are all better...because of her. She works so hard to accomplish what seems like such little things to you or I.

Betsy is now 4, and still has no diagnosis. (Well, technically, it is static encephalopathy. This is a catch-all term, much like, cerebral palsy. The good news for us is that she is healthy as a horse. She loves all kinds of music, especially, dancing music. The Ting-Tings-That's Not My Name is always a fave. She loves books and, strangely, gloves (she has a tote bag of all kinds) and snacks out of Ziploc baggys. She attends special school 4 mornings a week, and receives occupational and physical therapy (OT and PT), speech therapy, and individualized classroom instruction. More importantly, she has her family. We love her and support her, and celebrate every accomplishment, no matter how small, with her. She is special, no doubt, and we rally around her in a way that is normal to us now. She IS the odd girl out, but in the very best sense.

We are told that Betsy will always have moderate to severe physical and mental disabilities. Even now, that is a hard thing for me to write. I am not sure when I will completely be okay with that. But it gets easier and easier every day. She makes it easier and easier. She is the happiest, smiliest, huggiest, kissiest girl I have ever known. She snuggles and cuddles. She loves music, has an infectious laugh, and is kind to everyone she meets. And, we are so lucky because Betsy's body is as healthy as a horse. Other than 2 minor surgeries (eyes and ears), we have had no health concerns with our girl.

Betsy's next hurdle is to learn better communication skills. She is non-verbal and only knows a few signs. But, good gravy, she wants to communicate, and she does the best she can. Our youngest, Rosie, has been such a good addition to Betsy's learning. We struggled with the decision to have more children. Would the next baby have the same fate? In the end, we decided that it was in God's hands, and we would eagerly and lovingly accept whatever He were to bless us with. Betsy mimics Rosie and tries to do all of the things that she does. She has accomplished more in the last year, than the 3 previous years combined. Currently, she has been going pee-pee on the potty whenever Rosie does. Yea! We are amazed. I know that we will continue to be amazed by her on a daily basis. The boys love her and don't even think twice that she is "different". Her needs seem normal to them. They don't even mind when she drools on them.

This little girl has quite an impression on people. I am certainly proud of all of my children. What mother isn't? But today, I was struck with more of a "I-am-proud-overwhelmed-that-I-was-chosen-to-be-their-mother" feeling. I never, in my wildest dreams, thought that one of my kids would touch so many people's lives in such a profound way. We all have hopes and dreams for our kids, but they are who they are, and their destinies are out of our hands. An astronaut, doctor, or child actor would be nice, but who gets to say they have a 'Betsy'?

I know that God loves her. I also know that she must feel His love in a way that you and I may never know in our earthly life. He has made her special. His gift to her is LOVE. Love that knows not of judgement, or race, or bias. It is pure, unconditioned, and full. In essence, she is the most fulfilled individual I know, and she is only 4! I know that I do not need to understand God's plan. It is divine and surpasses all human understanding. It is hard for me to give up that control, but I must, and I do. That, and to love my little girl for eternity, is all I can do.

To follow is a prayer that was sent to me from my dear and beautiful cousin, Michelle, when Jake & I first learned of Betsy's condition. We were in a constant state of flux, always wondering what the future might hold for all of us, but more importantly, Betsy. I was very sad much of the time, and I said this prayer often. At the time, there were moments when I wasn't sure if I could fully surrender myself to what the words were actually saying. It was a long and difficult rite of passage for me, but I earned the badge, so to speak, and wear it with honor. Now, I say this prayer for comfort. I am faithful and know the absolute truth of the words. We do NOT need to understand everything that happens to us in this earthly life. It isn't in our job description. And quite frankly, I am glad of the not knowing. Some things are better left unknown, and some things just happen for no reason at all. It is what we take away from these crises that is the important thing. God is working through us all.

"Father God, Thank You for always being there for me no matter what I face. I know You will never fail me, even in my most intense trials. I have not always understood why I was going through certain things; however, I do not have to understand, because You are God and You are in control, in spite of my lack of understanding. I know that all You require of me is to trust You, and look to You in faith and You will come and save me, and bring me an answer. You always have, and You always will, because You are faithful. You never fail any of us who look to You. I have failed You, Lord, by my doubt and unbelief at times, but You have never failed me. Lord, please remove all the sorrow and grief I feel. Heal this pain I feel in my heart and help me to trust You more. Fill this empty place in my heart with more of Your Spirit. I ask this in Your name. Amen."

Nathan's Hope

To say that Nathan Dorje Andrew is a “Miracle Baby” is an understatement. Nathan has Holoprosencephaly, a brain disorder that causes skull and facial defects, as well as severe developmental delays. In most cases the babies die before birth.

Here are the statistics for Holoprosencephaly:

His condition is about 1 : 20,000 out of every birth. (0.00005)
1 : 200 make it through full term pregnancy alive. (0.005)
less than 2% of those survive through the trauma of birth to their first breath. (0.02)
less than 1% of those that survive come out without health complication which will allow them to live during their short hospital stay. (0.01)
Total odds = (0.0000000005) or 1 : 20,000,000,000 chance. That is 1 in 20 Million.

In the California Super Lotto Odds = 1:18,009,460 (1 in 18+ Million).

Nathan Dorje Andrew
(aka. Mr. Smiles)
Born: August 7, 2006
Weight: 7lb. 9oz.
Height: 19 inches

Now, Nathan is 2 years old and has beaten all the odds.

Unfortunately there is no course of treatment for this disorder. Nathan has had to go through countless tests and treatments. Due to the nature of his disorder, he needs specialized treatments designed to treat the brain. These treatments are not covered by insurance therefore they have refused to pay for most of his therapies.

Because of kind-hearted people, we have been able to put him through some treatments that have helped him, but he is a long way off from walking and even further from being normal.

We refuse to believe that Nathan doesn’t have potential and we refuse to give up and just accept that he will be in a chair non-mobile non-verbal. Now of course we know and understand that it is a possible outcome and we accept that. However, we figure that if that’s his prognosis then if we don’t do anything that’s what’ll happen and if we do something it may still happen but there’s a chance that he will develop new skills so we want to do our best to explore the possibility of helping him develop new skills. All we have to lose is money and we’re willing to accept that loss.

So we have looked at and researched many programs that have the potential to help Nathan develop motor skills. Please see the chart below to review our research:



You can click on the chart above to see a larger version of it.

I have read and done research on brain plasticity and believe that if we follow different therapy plans it’s possible that maybe Nathan’s motor cortex will remap and enable him to gain some motor skills. We’ve already seen this as his occipital cortex seems to be absent yet his vision is perfect. So we’re hoping to extend this to the motor cortex.

Here’s what we’re currently doing:

Physical Therapy: 5 times / week (3 times at home, twice at a clinic)
Occupational Therapy: 3 times / week (at home)
Speech Therapy: 1 time / week for language/ augmentative communication, 1 time / week vital stim (at clinics)
Developmental Therapy: 2 times/ week (at home)
Group Therapy: will soon start twice a week at a clinic
Hippotherapy: 1 time / week

We have also been to Oregon and have done a program called Reach, which is similar to the Institutes for the Achievement of Human Potential. Here’s a video of him doing a session of the program:

Reach Program Video

We were doing that 4 times a day but have winded down to doing it once or twice a day.

He’s had fetal stem cell infusions twice in Dominican Republic. They were given to him by Dr. Rader from Medra.

He’s been to an intensive therapy program at Napacenter.org. He went for 3 weeks, 4 hours a day. He got stronger, but lost the strength very quickly. We would like to go again in the near future.

Hyperbaric Oxygen Therapy. Nathan started “diving” last October.

ABR (Advanced Biomechanical Rehabilitation): We went to Montreal for this program last October: abrcanada.com

G-therapy: We have the first 3 months ready to go and will start him on this program on the week of Oct 13th.

We are now looking at the following things: Future Treatments:

Biomedical Protocol: We are testing him for food allergies and will create a nutritional program specific to his needs. We’ll ge giving him vitamins and supplements to support his immune system and body. We sent the bloodwork, stool and urine samples and will wait for the results to start his diet protocol.

Neuro-fitness: a developmental program that is design to help him to overcome infant reflexes and stimulate new neural connections for movement. Neuro Fitness

After we get back we want to think about/look at some of the other programs listed on the therapy chart.

Our hope is to get Nathan strong enough to hold up his head and possibly his trunk, as well as to develop the ability to say some words.

Finally, we are finalizing the process of getting him a gait trainer so he can gain independent mobility. We’re getting him the Hart Walker and the Kidwalk.

Medically, Nathan’s only problem is Reflux for which he takes prevacid, and hydrocephalus for which he has a VP shunt. He feeds orally (mashed/pureed foods).

Nathan’s hope is that he will one day be able to hold up his head, control his muscles, sit unassisted, crawl, walk, and say words.

Nathan’s life is a miracle - his chances for survival and living past 1 year old were 1 in 20 million.

Nathan not only lives - he is full of life and joy. He is a happy child who loves elmo, his family, swimming in the pool, and reading books.

Nathan needs intensive intervention to achieve goals like head control, rolling, sitting, standing, and crawling.

If you would like to donate to help Nathan click HERE to find out how.

By Brian Andrew of Pray for Nathan