That special child has begun school....he loves it...mommy does not. As I am happy to see his independence and that he can actually be with someone else and stay alive.....it's not exactly been easy. He is a hard kid to understand and will be labeled....stinks for him as his heart is bigger than his body. The kid really is great, if you understand him; albeit a smarty pants, and almost too intelligent for his own good. The ipod has been our only break and our eye patching is going down fast...he hates it, we feel horrid doing it...but it has to be done. I'm looking for just one other mom who has done this for support, looking like I'm by myself. I will do this, and I will do it well. TGIF!!! Tag teaming with my husband this weekend and that helps alot!!! Girls night out tonight will refresh and make my day anew.....me and my boy...we will survive!!!

For those inquiring minds that want to know.......

Yep I said it, now what is it??? Hypohydrotic ectodermal dysplasia is a mutated gene gone wild. The definition is massive and worded by a mother--NOT A PROFESSIONAL......I will make it kid specific....specifically how it fits MY kid. HED is a condition that keeps my child from sweating, gives him multiple skin conditions, affects his teeth (weaker), affects every bit of water in his body and reduces it by 90%. It sends him to the bathroom immediately after consuming fluids, as his body doesn't soak much of it up, it can make him choke on food (lack of saliva), overheat on a semi-cool day, risk of cavities are higher, his hair is thin and brittle, excema is more extreme, and as it is highly rare....it can kill him. This is a genetic disorder, if he has girls someday...they WILL be carriers!!! (Unless Edimier can get the fix before his time comes...they are a drug rep working on helping babies with this disorder)   Those are the things we've learned in the last 4 years.....and seem to be learning more on a monthly basis....
What is sensory processing disorder you say??? Well, let me tell you....I. HAVE. NO. CLUE....
 I mean, SPD is a problem with your senses...which sounds easy enough....UNLESS, it affects ALL your senses like my son. Yep, he didn't taste food for real until he was almost 3 and started learning that with taste comes dislikes and likes. Ok....boo on our part as NOW he will not eat EVERYTHING we put in front of him. Sense of smell....he didn't smell until he was almost 4 years old...yay or boo, we don't know yet....but at least now he understands the jokes made about farting (called tooting in my house). Sight, um...boo on all counts his vision is terrible and he goes to a specialist to get this taken care of...he is currently getting eye patching for 2 hours a day. Double boo. Hearing: some days extremely sensitive, some days he can't hear a thing.....we think, by choice. Let's just say we wear headphones or earplugs...ALOT. Last, but more important touch: why is this soooo important??? Well, not being able to feel touch means you cannot feel pain, yay?...UNTIL you put your hand on the heater and realize how much that really does stink....because now we are not only treating a burn on a hand, we are treating the burn on the hand of an HED skin sensitive child with no feeling....BUT is smart enough to know in his head it is SUPPOSED to hurt. He has learned automated responses by watching his siblings.....so you bring out the shot...he screams, kicks, the whole kit and caboodle....really? UGH.
Allergies....MUST we go there??? He is allergic to most fruits, apple and oats are a specific epipen related allergy, and several other things including the cold.
WHAT? Yep, he has cold uticaria....bahahahaha...oh wait, it's real??? CRRRRUUUUDDD!!!

Now what does all this mean to this special little guy??? Not a dang thing!!! He goes on about life like it's the best day ever!!! EVERY DAY!!! Does he miss some foods??? yep Does he get upset about not getting something??? yep Does he dwell on it??? NOPE!!! 
He looks and acts the part of the most normal; albeit comical, lil man that we love more than he will ever know!!!

I believe this journey is teaching my family that no matter what you have in life...you make the BEST of it.....and just be happy!!!
I hope you enjoy our journey...there are ups, and many downs, but together we will get through it all!!!