Some hope to grasp on to

I have been talking a lot lately.  Talking a lot about Mikai's disabilities and the steps that we have made to help him get to where he is.  When I discuss it out loud to someone it feels, false.  Like when I explained to my coworker the other day that Mikai likely has a neurological disorder and his disorder could be linked to gluten intolerance.  (This has yet to be diagnosed therein, my sense of falsifying information). This doesn't sound like my little boy.  But when I show videos of the slight progresses he has made, I realize - this is Mikai.  I love every little bit of Mikai, no ifs and or buts.  Sure, it's frustrating for me when I can't understand what he is trying to communicate - but I wouldn't change Mikai for the world.  He is the most loving, sensitive little boy that I know.

I have never been so proud of him as a Mom as when he stood up twice this week in front of a crowd of over 30 people with his companions and belted out Christmas songs.  No one could understand what they were saying most children in his class suffer from the similar issues, but they were so proud of themselves.  "I did it!!" Mikai cried out to me when it was all done.  I, of course, teared up, and giggled at the silliness of it all.

In another positive light, my husband has informed me that Mikai's teachers have noticed sounds coming out of Mikai's mouth they have never heard before.  I myself heard him say "ST" in Justin quite well which I was shocked at!  Is this a sign of him aging?  Is it a sign of his body ridding of toxins?? That's the hardest thing about being a parent.  As a chemist, I know that in a controlled environment you only change on part of the experiment to see how it affects the result.  As a human, this is impossible.  There is no way to only control one part of the "experiment", which is essentially what we are doing.  We are trying a gluten free diet.  It is hard to know if we make any difference at all in his ability to learn these things to help him sustain an independent life.

So this one was a little random - but in summary, I have realized that I am just a proud mom, of a wonderful little boy.

Two and a half weeks

So it's been two and a half weeks since my last post.  Mikai has shown little improvement.  I was of course, extremely hopeful and thought I saw immediate improvements such as reduced drooling, but more often or not it is a random cycle where he drools more some days then he does other days.  I am not totally sure, but I am pretty positive that Mikai is definitely trying to speak more.

On a physical side, Mikai doesn't go to the bathroom nearly as often as he used to and he often complains that his stomach hurts.  I am not sure if it's because he didn't go to the bathroom for 2 days or because he was getting the flu as one day he woke up and he started letting loose.  Nothing came up, but he was definitely doing the motions.

I am still going to give it 6 weeks to see if there is any improvements at all.  I am guessing though, things will likely remain the same and once we cheat (because, one day we will probably give him a cookie or something) then we will notice some big changes.  The other option I am left to face is to eliminate refined sugar from his diet as well.  Or take him to an allergist.  I will likely sit on that until we speak with our pediatric neurologist.

In the meantime I will share a little of Mikai's history.  I had a normal pregnancy and a totally normal birth. Mikai and I struggled with breastfeeding and so he was almost immediately put on formula.  At about 4 months old he started drooling and I, being a first time parent, attributed this to teething.  But the drooling never stopped.  It didn't slow down, and Mikai's shirts were often soaked from drool.  he is much better at controlling it these days, but there are times where his shirt is wet to just above his chest.  I have been told it's normal to drool until 8, which was just recently extended from 5 years of age.

Mikai was checked once a month with his parents as teachers helper, and he was always delayed in most attributes, but he was never disabled.  Until he reached about 2 years did they tell us he was severely delayed and needed more help.  We went to the hospital and put him in a play group once a week that helped try to get 2 year olds to find their words.  After that summer they assessed Mikai as he was now 3 years old and indicated he would qualify for PUF Programming and we could put him in an ELP (Early Learning Program) at a school where he would likely qualify for 5 days per week, half days for the school term.   This is his second year in the PUF programming and he has grew immensely in many areas, but it still continues to be a struggle for him.

So this is where we are to date.  More coming later

Merry Christmas!