Baltimore Feeding Therapy Week 3

PWe have now completed our third week of therapy. It is a tender mercy that we are not in-patient and get to go home in the evening to be with our family and enjoy going to church together on Sunday. 

Monday was extremely good following the dramatic Friday after Thanksgiving.  I had to trust the process that KKI could push us to our limits and then bring Hayden back in a better way.  I can't understand the process with a mother's heart. After watching and hearing what I witnessed, child protective services may have made the claim that I failed to protect my child. But I can tell you, there is psychology behind it. A social worker had to come and sit with me and talk me through what I was watching. This experience is changing us. 

We needed the weekend to get away to DC.  We had a great time together touring the city for a brief stay.  Everything was joyful and wonderful.  Scott and Hanna went to see the musical production Cinderella. It was a rainy couple of days but we were able to see the White House, tour the awesome Air and Space Museum and the enourmous Natural History Museum.  Being together is healing us. We are relying upon each other and appreciate each other.

Overall this week was very positive. Hayden is now eating all of the foods that are presented in front of him. He's not willingly initiating food intake, however he will allow it to be fed to him. He has not projectile vomited any of the food this week but he does continue to gag with many bites. We chart his vomiting which the doctors specify with political correctness and term it "emesis." 

The head of the clinic over saw Hayden's session this week. He has extensive background and research with published articles regarding Hayden's specific neurological and physiological conditions.  This is one of the reasons why I felt very comfortable with this clinic. He also has a family member with spina bifida.  Although most of the children have behavior issues and conditions related to autism, Hayden has more complicated physiological conditions with less behavior conditions.   He is very eager to please and is very quick to catch onto the rules and tests that they are trying to implement. 

As early as Tuesday, Hayden began eating small bites of muffin and he is preferring to eat applesauce and yogurt. He is also working very hard with occupational therapy to strengthen his jaw, oral motor control and to desensitize his gag reflex. The highlight of a very rainy day was getting to go to play with the dog in his pet therapy.  It brought a bright ray of sunshine on a rainy day.  It was also a relaxed therapeutic moment from all the work that we've both been through.

Scott traveled to Denver for the week. Of course Hanna and Garrett had to get sick at the same time. We have tried to keep the kids from as much exposure as we can from illness. While we take public transportation we try to be extra cautious.  Fortunately, we have a fantastic nanny to rely upon who took good care of the kids while Scott was away from work and I was at the hospital.

Thursday was a remarkable day. Hayden had a therapy session jointly with another friend in clinic. Together they both ate their first meat and cheese sandwiches. That might not seem like much to most but that was our ultimate goal for the eight weeks. It was my hope for him to be able to eat complex age appropriate food socially without vomiting.  He has never eaten meat. During the session he took big bites and asked for more.  He is starting to register the pleasures of food without as much fear.  He is desensitizing and building confidence. And another therapy session he made peanut butter and jelly on crackers. While he is not able to eat enough for caloric intake, he is able to eat small bites socially without vomiting.

Chef Hayden at his lunch date,

Scott and I teared up many times over dinner for Hanna's birthday. We had a near perfect day all day on Saturday. It started off wonderful first play date from an old childhood friend and his children.   The children miss their friends. Hanna has been able to face time with a couple of her friends. We also had a very wonderful visit from extended family members living here in Baltimore. Living downtown is great, but nothing can substitute for the social aspects that the children get to have in their wonderful inclusive school environment.  

All of the museums downtown this weekend only were only a dollar so naturally downtown was busier than ever.  We visited the observation deck from the World Trade Center, we practiced our ice skating on Pandoras ice rink, while the boys toured the Baltimore train museum.

Hanna chose to have her birthday dinner at the Cheesecake Factory even though she started her birthday celebration last week. It was one of our best meals out together as a family. Hayden ate bread with butter.  We still are hypersensitive to potential for vomiting but he showed his confidence. He is starting to use his back teeth for chewing. Hanna also has been showing him a lot of praise for his efforts.  She has been very bothered by his inability to eat and his lack of control with constant vomiting.  As many times that we've tried to explain it to her, a nine-year-old can only comprehend so much. After all he is still just an annoying little brother.😉

We end each week by taking Sunday off. We have found a church that we can attend and connect through the subway. It is only two stops away from our location. It is very humbling to be the racial minority with extreme diversity of economic opportunities presented all together for worship.  

This week will be another push through week. I do not anticipate it to be as easy as last week. In order to make a change we have to push hard.  This is Hayden's Olympic training camp.  We didn't sacrifice and come here to do the status quo. We came here to make a change.  

Baltimore Feeding Therapy Week 2

This week Hayden has seen every therapist in the program. He has a schedule broken down by the half hour for teaching instruction, feeding instruction, physical therapy, occupational therapy and music and play. The evaluations are concluding. Program treatments have started.  He is all day in various therapies from 9am until 5:30 6 days a week.

On Tuesday, he had his first piece of toast with jelly in his OT therapy session.  On Wednesday, he succeeded in eating all of his yogurt in his feeding therapy session. He also succeeded in taking three bites of pancake with syrup again in his occupational therapy session.  None of the pieces are larger than the size of a dime. He is encouraged and proud of himself.  He is enjoying it and not fighting it so far.

We are grateful for our nanny who takes care of our children with little/no toys or resources and made art, cookies and fun for the kids.

On Wednesday we had a late afternoon break and got the opportunity for sunshine (something we don't usually see all day being inside) so we made the most of it with a family outing to the park on a gorgeous day.

His first time balancing well enough to sit in a regular swing solo.

Belgian horses Porter and Big D.

Hayden is working on his oral motor control and hand control to use a spoon and take larger bites. That means that he is learning to use his tongue around in his mouth and have food and other locations other than the front of his mouth.  We are very excited that he WANTED to take bites of pancake even though he did still gag and vomit at the end of the session.  He has to learn how to build up his muscles and to become slightly desensitized.  

He is starting with three seconds of stimulation and we're moving up to five. That is why we are doing an intensive program that requires daily treatment instead of weekly treatment. The progress is very slow when treatment is only done once a week and not consistently.  Here the variables, stimulus and other factors are tightly controlled each feeding time like a science experiment.

Hayden loves the excitement of taking the subway.  He loves the elevators when they work and thinks his Daddy is the coolest when he picks up his chair and carries him on the escalator when the elevator isn't working.

On Thanksgiving, Scott took Hayden to eat while he observed how the psychologists fed Hayden on Thanksgiving.  This was his first time in two weeks being able to participate in part of the program.  While he was there, I was able to go for a morning run and happened upon the Baltimore turkey trot.  It was a wonderful way to start the holiday.

This weekend we are taking Saturday off and going via train to spend the weekend in DC and take the kids around the museums.  While our experience of living in Baltimore and having a child in the hospital daily is very unconventional, we are extremely grateful that we get to spend the holidays together as a family.

We have an apartment that were able to rent fully furnished and have a grocery store that we can travel to on the city bus. We have a nanny that we can trust to take great care of our children and show them a good time.  While we may not have our home and our stuff for the holidays, the most important thing is that we have each other.  At the end of an exhausting day, we come home to each other.  Through our experience, we have the unique opportunity of seeing some of the best in society. We meet some of the kindest, most genuine people that want to help families and children.  Our fellow church members and followers of Jesus Christ reached out to us in loving, selfless and generous ways.  It has touched our heart to humble our gratitude.  We are doing our best to make the most of this opportunity that has been given to us thanks to answered prayers and special friends who helped us work to get here through listing our house, storing our cars, packing our house, writing medical letters,  arranging all the schooling,  help with housing and child care.   

It is an opportunity that we could have passed on because it was too hard,  too costly,  too big of a mountain to climb.  

A great quote from Booker T. Washington,

"I have learned that success is to be measured not so much by the position that one has reached in life as by the obstacles which he has overcome while trying to succeed."

Living this short while in an inner city environment,  we see poverty and a diversity of economic opportunities.  Gratitude changes your perspective and outlook creating a path to happiness.  This is something I have to work at daily to cultivate.  It is easy to see some of Hayden's challenges and obstacles but I am able to see so much of his limitless potential. He works hard to stay healthy and happy and positively growing every day. I only wish that everyone could see their own potential without self pity all the while full of self determination and patient working endurance.  

Baltimore Feeding Therapy Week 1

The 1st week of November we learned that Hayden had been accepted into the feeding program in Baltimore and they wanted him to start the following week.  Fortunately, I have a spouse who is willing to sacrifice himself and be a great steward over our children at any cost.  We quickly did as much as we could to help get things in motion.  We also couldn't have done it without prayers and all those that helped us pack just before we flew out.

The next week came and we ended up canceling our flight due to the denial from  our insurance company. We were run down and ready to give up.  However,  with a little energy left,  I called our wonderful team of Austin doctors who quickly wrote letters of medical necessity on our behalf and we were approved Friday morning of the same week for an outpatient program instead of staying as recommended full-time in the hospital.   This means that we get to come home every evening and have Sundays together with the family. It is a tender mercy to come home every night to our family.  We will get two Saturdays off which we hope to take a train trip to DC and to celebrate Hanna's birthday.

By Saturday afternoon, we flew on separate flights to Baltimore and arrived Sunday all together at 2 AM. 

Thanks to the recommendations for accommodations, KKI and the Ronald McDonald house, they help medical tourists reserve a nice hotel as they cannot accommodate large families. We were also able to rent a large van to haul all our luggage and family.  

On Monday we checked into our short-term furnished rental apartment in the heart of downtown across from the harbor. We are on the 17th floor of a high-rise where Scott is able to walk to work and I am able to take a shuttle, bus or subway with Hayden to the clinic.

We are a family of five living in an inner-city with no vehicle. It is a fun adventure. We also were able to have a nanny (thanks to a referral from another mother in the program)

that will be with our children Monday through Friday while we are gone at clinic for eight hours Monday through Saturday.

Tuesday we got to take the day to unpack and see what kid friendly things there were to do in the city that are within walking or public transportation distance.

Wednesday was our first day at KK Institute for the feeding program. It was a whirlwind day. We are so grateful to be here together as a family to give each other support. The people working there welcomed us with open arms and jumped through hoops to get us in very quickly before the end of the year when our insurance clock would restart.

The program is intense to say the least. It felt like my first day of college of my undergraduate studies.  I was learning where to go on campus and trying to understand my schedule for classes throughout the day.  And of course no amount of planning could keep the day from starting without drama. 

On the way to catch the shuttle, our prepared liquid tube feed lunch and dinner backpack exploded in the elevator (I am not going to miss the mishaps a feeding tube adventures; that could be a whole other blog) with no time to get a new bag or to clean up before going to the program.  Fortunately, we were going to a hospital where those items could be replaced.  

The day is scheduled by the half hour. The first day was filled with observations and assessments. He will get great service and therapy while he is there.  I have no doubt in my mind that we chose to make the sacrifice to come to the best clinic for his complex set of needs.  Nearly a week later we're starting to feel our feet underneath us and we'll be settling in for the next several weeks. We are giving this experience our al.  We also want it to be great fun for the kids.  We live across the street from the aquarium. We also live by so many exciting things for the children. They are having such a great time we are wearing out.

Feeding/Eating disorder Baltimore Kennedy Krieger Clinic

How did we get here?

A special thanks goes out to having a wonderful companion husband in Scott to raise our children. He quickly rearranged his schedule to be able to work from home and take care of the kids. 

Wednesday morning at eight 8 AM we got a call that there was availability for Thursday afternoon if we could make it across the country.  With God's timing, when he wants something done, he'll make it happen. Within a few hours we had a reasonably priced same day flight with a fast connecting layover, a discounted hotel (complements of the local Ronald McDonald House as they were all booked) and the social worker all scrambling to help us make these accommodations. Hayden got off the bus and we whisked him away to the airport.  He thought it was a great adventure! Hanna was also happy that her sometimes annoying little brother, gets to come learn how to eat properly😉.

I quickly in haste packed a list of priority medical items in an entire suitcase (refrigerated prescriptions and liquid feeding supplies are fun through TSA)  and a small overnight suitcase for us.   With all of the haste I left my cell phone at home.  This could have been a large stumbling block but fortunately I lived and managed before the time of cell phones. When we got to the airport, just an hour before our flight, the parking lot was full and all of the handicap parking spots were taken. I drove around the barricade cones to get into the closest parking and found a spot right in the front. What a coincidence.

Spontaneity is not my style. Apparently dramatic frantic chaos is. While I didn't get much time to plan or be somewhat organized, God is always in control.

Pushing a wheelchair and pulling two suitcases is somewhat of a circus act in itself. We couldn't check luggage due to the short connecting layover we had.  We also can't risk misplacing the medical supply luggage.  So you'll have to picture me pushing all of this through TSA because my selfie on my phone wasn't available. TSA, the stewardesses, pilots and people on the plane could not have been genuinely nicer. I had to humbly ask people around me to assist in wheeling off our luggage while I carried Hayden off the plane. People were going out of their way to help us be kind to us.  We finally arrived at 1 AM to the hotel. Our consultation is at 2.  We will try to find something fun to do in the city and then head back tomorrow. 

If you want to continue on reading, I am going to write this post as a Q& A while my little guy is still resting from our long trip.

Why we are going to a feeding clinic?

For nearly 3 years we had Hayden seeing a feeding therapist weekly before he got very ill throwing up daily for months and had his g-tube placed.  We have known for some time that Hayden's weight had improved and his aversions to food had shown signs of improving since he had his g-tube. He had been willing to try new textures and new foods.  We have had him on a high calorie blended diet full of wonderful things you could only dream of most kids eating (wheat germ, kale, fish oil, quinoa, turmeric, coconut milk, pumpkin, flax seed ect.). I believe that it is thanks to his tube and his body accepting the nutrients that he has developed new tastes and appetites from eating every 3 hours of the day.  Because of so many years of developing bad habits and trying to overcome physical small motor challenges and neurological challenges, his nutritionist and therapist thought that now might be a good time to work intensely on feeding in stead of just something once a week more in his already packed daily schedule of therapies.

Choosing a clinic:

Months of research led us here.  There are a handful of intensive clinics throughout the country for high needs eating issues.  Several factors had to be considered to make the selection.  All require time away for several weeks.  I had to try to analyze what clinical approach is best for Hayden.  It was something I had to ask other parents and therapists about the good and bad and what they had been through with these programs. And the last big factor was cost.  How are we going to get there? How do we pay for childcare when I have to leave 2 other children behind?  What is the emotional cost of leaving my young children behind?  What is the educational cost for pulling Hayden out of school?  Where will we stay? How much will our insurance cover out of sate?  What are my goals and will it be worth it?  Is it the right time?

Time was ticking for getting in by the end of the year with our insurance. 

I had to start with just making the call and applying.  The process takes a lot of time going over medical histories.  As I came to find out many of the decisions are made for us when we simply started learning what was available to us.  By this time of year we had met our huge private insurance out of pocket insurance cost for in network and out of network.  We no longer had co-insurance of 20% of the bill.  Texas Medicaid isn't taken out of the state of Texas by most providers.  Even most of the docs in Texas don't want to take it.  What I learned is that every program needs to do an evaluation before they decide on the course of action.  This means a trip before they even schedule you into their program.  We need this desperately by the end of the year or we are subject to our huge out of pocket co-pay and 20% of the bill.

Why Baltimore?

We had been scheduled to do an intake in Dallas but have heard less than favorable comments from several people which detourred us from investing in this most convenient clinic. We have a personal friend that had a huge success at the Children's Hospital of Philadelphia. Unfortunately their program is not inpatient and you go home to a hotel every day for 4-6 weeks.  Lastly, we were considering a multidisciplinary program in orange county as well. Kennedy Krieger and Johns Hopkins together offered so many specialists that seem to be exactly tailored to eating disorders as well as to Spina Bifida.  We actually had one parent say they had left the Texas program and had success completing this program.  It seems like a very good fit that works out at an individual pace. 

The most exciting news was that we would be covered by insurance at 100% if we could get in by the end of the year. Unfortunately, their next appointment wasn't until March 2016. We were put on a waiting list and now we do our evaluation and learn what God has in store for us next. This is not a dull journey.  

Carpe Diem and Yolo Baltimore crab cakes on order for feeding clinic?

Back to School Education about Spina Bifida Awareness

Our Vision for HAYDEN

Our vision is simple.  We want Hayden to be given the same opportunities as any other student in the school.  We want him to LIVE, LOVE & ACHIEVE whatever dreams that he wants.  It is important to us that Hayden be seen for what he CAN do & not for what he cannot do.  We want Hayden to reach his full potential academically & socially.  If his teachers & staff have high expectations for him, he will SUCCEED. 

VALUES that are important to us as a family:

• We value the celebration of Hayden’s STRENGTHS 
• We value the use of People First Language ex:  My student Hayden has a wheelchair, not Hayden can’t walk. His legs may not work, but his ears do.
• We value the appropriate responses by adults to questions regarding Hayden’s differences.
• We value Hayden’s inclusion in all activities fostering his INDEPENDENCE.
• We value our parental role as a part of the team that supports Hayden in his education.
• We value his school experience & private therapy, which is helping him reach his FULL POTENTIAL.

SOCIALLY

Hayden loves to be social and loves being around people.  He has a big sister, Hanna (3rd grade) and a little brother Garrett (2.5yrs).  He has lots of friends and Hayden loves the ladies too.

A lot of things make him unique.  He has a lot of gear and equipment that most kids don’t have.  He has 2 wheelchairs, AFOs, HKAFOs, RGOs, a stander, a walker, a feeding tube & a brain shunt and many diagnosis.

HAYDEN’S INTERESTS  

Hayden is a happy boy.  Hayden loves all activities, he loves to ride horses at hippotherapy, he loves to ride the bus to school, basketball, t-ball, football, to race his wheelchair, to go swimming, to play t-ball, to cheer for his sister and to be a big brother. 

MEDICAL MATTERS

as provided by another special needs father Matthew Linden

Spina Bifida/Myelomeningocele: Spina Bifida (SB) is the most common seriously disabling birth defect in the United States. An estimated 5 children are born with SB every day in the US. SB occurs during the 4th week of pregnancy before many mothers know they are pregnant. In cases of SB, the spinal column fails to close properly which exposes the spinal cord to amniotic fluid. This exposure leads to damaged nerves. SB can occur anywhere along the spine – from the neck to the tailbone. The higher the defect occurs on the spine, the more severe the damage. Hayden’s level is L5-S1 which is considered severe.

Arnold Chiari II, III & IV Brain Malformation: Hayden’s brain has to work harder than most with his variety of abnormalities.  The Chiari is a herniation of the brain that goes into the neck.  His cerebellum is not only displaced, he also has a tethered cord as well as hydrocephalus. He has a lack of cerebellar development as well as a thin brain stem and splits in his spinal cord.

Hydrocephalus: Most children with SB have Hydrocephalus (HC). HC occurs when the spinal fluid produced in the brain does not properly drain into the spinal column. For this reason, many children with HC have a tube (shunt) placed to drain the excess fluid. Hayden’s shunt is behind his right ear. There is a tube that runs underneath her skin to his abdomen where the excess spinal fluid is absorbed by his body. Hayden’s shunt does not limit his activities in any way. 

Symptoms of Shunt Malfunction: Getting a simple cold can look like a shunt malfunction.  An onset of excess sleepiness, lethargy & vomiting require a trip to the ER for testing.  Shunts do fail from time to time for a variety of reasons. Symptoms of shunt failure would include “Sunset Eyes” and/or a constant headache that would manifest itself by long-term inconsolable crying. Sunset Eyes is when the pressure behind the eyes forces them to look downward as if the pupils were a setting sun and the lower eyelids were the horizon. 

Epilepsy:  Hayden has recently been diagnosed with seizure activity.  He is on twice a day medicine to try and control the episodes.  He also will have rescue medicine at home and at school should he have a major seizure.  There is a seizure action plan at the school.

Scoliosis: In some cases, children with SB have scoliosis a bend in the spine. Hayden needs to be placed in any chair that gives trunk support.  Positioning in his wheelchair is also important.

Hypotonia: Hypotonic patients may display a variety of objective manifestations that indicate decreased muscle tone. Motor skills delay is often observed, along with hypermobile or hyperflexible joints, speech difficulties, poor reflexes, decreased strength, decreased activity tolerance, rounded shoulder posture, with leaning onto supports, and poor attention. For instance, hypotonia also leads to constipation. In some cases, muscle tone improves over time, and we hope that Hayden may learn or devise coping mechanisms that enable him to overcome the most disabling aspects of the disorder. 

Digestive Tract: Hayden has a g-tube that he gains most of his nutrition.  Instructions for emergency replacement are in his bag.  It needs to be placed within a half an hour or he should be rushed to the hospital for placement.  He can eat and drink on his own as well.  He also has a severe gag reflex that can cause him to vomit.  He is watched carefully when fed because of his gag reflex due to his Arnold Chiari.  Hayden’s digestive tract does not work as fast as a typical child’s. This can also lead to vomiting as he has slow motility of his food.  

Neurogenic Bowel & Bladder:  Hayden has a high pressure bladder like a hard basketball.  Hayden can void on his own but not completely.  At 5 years old we are catheterizing him every 4 hours.  Instructions are in his binder and every effort should be made to not touch the catheter to avoid infection.  Hayden also has little control over his bowel.  He is on Miralax as needed and can push to eliminate but it is unclear if there is much sensation.

Wheelchair: Differently abled people view their wheelchair as a part of their body just as a typical person views their legs as part of their body. When you touch a person’s wheelchair, the same rules of etiquette as touching a person’s body should apply. As a general rule (and for safety), only adults should push Hayden’s wheelchair. That being said, opportunities for Hayden to get physical exercise are limited so whenever possible, he should be encouraged to self-propel. As a matter of safety, the brakes on Hayden’s chair should be locked whenever he is taken out or put in his chair. Hayden should NEVER be left unattended near a slope or flight stairs as he will intentionally try to roll down them.

In an Emergency: Should an emergency arise, Hayden should go to Dell Childrens’ Hospital

Phone: 512-324-0000

Parent’s can also be reached by cell phone:

TEACHER MATTERS

as provided by another special needs mother Kim Johnson

What you expect of me matters… 

Because I will rise to the level you set for me, and I have many lofty goals to achieve. 

What you think of me matters… 

Because I will sense what is in your heart, and it will shape not only how I feel, but what I do. 

What you say of me matters… 

Because you are setting a tone, and leading my way. You are the voice I wasn’t given to help others understand not just what I have, but who I am.

What you accept about me matters… 

Because if you meet me where I am, and embrace me for what I have to offer, together we can shoot for the moon and at least find the stars. 

What you do for me matters… 

Because when you offer me not just your time, but your devotion, and not just your attention, but your passion, you are not just fulfilling your duty, but rather answering a calling. 

What potential you see in me matters… 

Because if you can envision my wings, then I will learn to fly. 

What investment you make in me matters… 

Because if you dedicate yourself to making me stronger, it is not only me who will be bettered, but you will be, as well. 

What connection you have with me matters… 

Because if I know you care, then I will care. You will reach me, and I will grow. 

What attitude you have about me matters… 

Because if I am seen as a blessing instead of a burden, my world will be much brighter, and my achievements will be much greater. 

What you believe about me matters… 

Because if you see my strengths and not my weaknesses, there is no mountain we cannot climb. 

What hope you have in me matters… 

Because the dreams you hold for me are woven into every step of my journey, and when those dreams are big, so, too, are my accomplishments. 

What ACTIONS YOU TAKE because of me matter… 

Because you are not only my teacher, but my advocate. The role you take in my life helps dictate the very path down which I will travel. Your power can help open doors for me that now stand shut, raise standards for me that remain far too low, and redefine the boundaries in my life that will either hold me back or help me soar. 

Yes, MY TEACHER MATTERS, AND SO DO I!

Hayden's wonderful teacher invited us to present about SB the second week of school.  We were very excited to present.  He showed off his AFOs, he showed how he can stand, he showed how he is trying to work on transfers, his feeding g-tube button on his g-tube dog, he showed his nursing skills.  He then showed all the things he had in common with the class and all the things he can do through pictures on the smart board.

He was thrilled to show everyone what makes him so special.  The whole class asked the greatest questions.  Looking forward to a great year full of potential!

Attached is what everyone got to take home:

This is what I learned about my friend Hayden Trigg with Spina Bifida:

What is Spina Bifida?

It is when you are born with part of your skeleton, your spine, on the outside of your body causing lots of problems and lots of surgeries.

Things that make Hayden unique:

• He has freckles and spiky hair
• He was the poster child for Seton Hospitals and Dell when it opened
• He has had 17 surgeries
• Hayden has lots of things to help him get around (wheelchairs, walkers, standers, AFOs).
• Hayden uses a tube that feeds his belly and he has a tube in his brain.

Things that make Hayden like Me:

• He has a baby brother 
• He has a big sister
• He plays t-ball 
• He likes bowling
• He likes basketball 
• He likes flag football 
• He likes swimming 
• He likes air hockey
• His favorite food is chocolate
• He loves ice cream and McDonald milk shakes

The only true disability is a bad attitude. We are all differently-abled.

There is a link through the Spina Bifida Association for Educators that we printed and attached:  http://spinabifidaassociation.org/learn-about-sb/educators/  

A "CURE" for Spina Bifida = Stem Cells + fetal surgery

You can read the full article here:  stem cells + fetal surgery https://www.ucdmc.ucdavis.edu/publish/news/newsroom/9953

This interview has me invigorated and moved to tears for many reasons. Some days I hate to see Hayden's little body struggle with illnesses and get frustrated and use the word can't. People with Spina Bifida are just like the rest of us, they just have more to endure and do it with greater grace. As a parent, my job is to never quit trying to make my kids' lives the best they can be.

Dr. Farmer is one of the doctors we met with when we went to San Fransico for the MOMs study for in-utero surgery before Hayden was born. We were fearful and told not to do it because it was too risky....but we prayed and went forward knowing it was Gods will for us to go on that journey. It was just a study then and now it has proven to be beneficial (not a cure) and is practiced in several well established children's hospitals across the country.

Last summer we went to Mexico for Stem Cell surgery. For years I was discouraged by many doctors that cared for Hayden and by many various people that what we were doing was too risky...but we prayed and saved and made that journey too on faith.

This is the first notable US doctor saying that STEM CELLS WORK! The US is the last to market for those that are the most vulnerable and need the compassionate treatment. I am thankful for my network of families like Warrior Families Beating Spina Bifida Foundation that is working to get the treatment we want and get the FDA to stop holding it back. I tirelessly call & write doctors and try and meet researchers. In a country that believes in innovation and invention we need to let scientists work. We shouldn't have to go outside of the US to get this done. Enough waiting!