Kirklan Robert Hunter

Needs.

 

Kirklan's care is now becoming more than we can handle. We have given everything we are and have to helping make our son's time with us the best quality it can be.

 

As we transition in to another chapter of Kirk's life, we are looking at special care homes. We are continuing to do all we can to make this smooth for him. 

 

His needs present a challenge and concern for us in several regards. He has extreme sensitivity to smells - smoke, perfume, detergent, cleaners - all can trigger seizures. He also does not handle noisy environments for extended periods which easily exhaust his ability to tolerate - again resulting in seizures.

 

He doesn't talk. This is especially tough if you're not an expert mind-reader. When in pain he doesn't always cry out. He is willfull - which is great except on days when seizures are really bad. He still tries to get up and go even though incapable without help. He will stand in bed and make every effort to escape his chair. This means he can't be left alone for a moment. 

 

He requires 8 feedings and waters a day on the ketogenic diet. He has had brief periods of time where he has been allowed to try different types of foods on the diet, but each time returning to an infant formula based meal. Meals and waters are scheduled 90 minutes apart and meaasured to within a tenth of a gram. 

 

The nature of Kirk's disease requires 24-7 care_ he is unable to do anything himself. That means bathing, lifting, feeding, bathrooming, walking, getting up from a chair and even sleeping in the same bed.

 

Kirk can have seizures through the night that if left unchecked could be fatal. During a seizure he is unable to move to clear a path for breathing. It usually requires a hand gently tilting his head back against muscle clench to maintain an airway.

 

Kirk's injury was not his fault. He deserves a good life. Thanks for your support.