I can remember a few years into our marriage, my wife katis started getting some serious baby fever. I knew I always wanted kids but honestly, I still felt like a big kid myself. For most people, the experience of your first child is new and exciting and that was typical of our story at first. When Katis went into labor I remember thinking to myself how blessed I was and anxious to meet my boy. After a night of labor, the Dr. seemed a little concerned and was preparing for a C-section.

 

I have to admit, I was getting a little nervous as I was expecting her to have one of the sneezing deliveries. When my son came out there was no cry, at the time that was probably the one thing I knew should happen. it never gets easier to relive that moment and no matter what the nurse told me I could see the urgency on the medical teams faces.

 

Thank God for the respiratory therapist who revived my son after a couple of minutes without a heartbeat or oxygen. To spare every detail of a nightmarish 2 weeks in the hospital, we were finally leaving the NICU, JJ's MRI was normal, EGG was good and they even pushed some genetic testing which came back fine too. We thought everything should be on the way up from here.

 

JJ was late on just about every one of his milestones, we spent the first year of his life in and out of specialists and therapy offices, my wife would drive him all over town and we never felt like we were getting anywhere. My wife and I really felt led to learning everything we could about natural medicine and alternative therapies. We still kept doing traditional stuff but really saw the biggest strides in our son with good nutrition, Hyperbaric oxygen treatment and a neurodevelopmental program that was extremely difficult and took up a lot of time every day. Our lives really revolved around this child and to our own fault probably sacrificed giving each other the time we both deserved.

 

We both now see the importance of having some date time for ourselves. For everything we were doing for him, the progress felt to slow. We started looking into genetics, as a means to counter any nutritional deficiencies, we were actually offended if a doctor asked if my son had genetic testing, we were certain everything he was going through was because of his birth. My hope was we would find one of the mutations you could aid with a vitamin or supplement and be hoping this would speed his recovery. Well, Against all odds JJ's results came back and he was diagnosed as the 38th person in the world diagnosed with a rare genetic mutation to a gene called CHAMP1.            

 

Silverthorn Golf and Country Club

Charity Dinner

Details TBA

50$ tickets

Dinner and entertainment provided

Silent auction. 

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  • Jeff

Where did our furniture go?

Updated: May 11, 2018

When your dining room and family room turn into a classroom and gym.

That used to be our dinning room:(






The therapy life

Since JJ was really young he has been in OT, PT, and speech. My wife used to be a professional taxi driver. Her life literally revolved around taking him to appointments. We would have to plan our day according to his therapies. We did a lot of driving and did not see a lot of results.


Neuroplasticty

We are committed to getting the best out of our son, so he could live as full as of a life as possible. We spend the majority of our days doing a in home neurodevelopmental work with out son. We were blessed to connect with a ND. Who has developed a in home program that helps develop and organize his brain.



The grind

why would you make a child who can walk go back on his belly and crawl.

My son JJ really skipped army crawling and did not creep on his hand knees for that long. Part of his program is for him to get back on his belly and get moving. Its not a easy task for a child who can walk to ask him to crawl again, let alone make it fun.

Results


We have had the opportunity to meet other families who have had their lives changed through programs from ND and the institute for human potential. It is extremely repetitive and difficult to do but we have seen the best result in our son from working from home. The pons, midbrain and eye convergence are all developed in children during the crawling developmental mile stones. We have work really hard to complete a 9-5 program with JJ and because of it this we are starting to slowly see some potential being unlocked.






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