Friendships are beautiful things

Mikai has been invited to two birthday parties this month.  The first was with a couple we became friends with as both of our kiddos were in soccer together.  C's mom says, "the boys are so excited for you to come over.  Mikai was the first kid he invited to his birthday party"!  C2's mom says " C2 would love to have Mikai over to play....he mentions Mikai often".

I was humbled and floored.  I know Mikai is special, but Mikai is also my child so I am biased.  It becomes a real parenting victory when children are mentioning MIkai in a good way, at home.  In life all you need is that one friend.  It's the friend that is by your side when you're having a rough day, the friend who gets into trouble with you and shares the discipline, the friend who plays imagination and passes no judgement, the friend that picks up the phone in the dead of night when you call.  I know Mikai is still so very young, but the fact that he has made such great friends gives me great hope for his future.

It also reminds me that Mikai is awesome outside of the home too.  He shows off his winning personality and others are attracted to him because of it.  I don't know how he behaves at school, but I imagine he doesn't let his inability to speak overcome his inability to have fun.  A lesson, I am certain, we can all learn from.   Inabilities do not equal a missed opportunity.  In fact, inabilities can give us many great opportunities.

The other great thing about this birthday party opportunity is Mikai's excitement to celebrate with is friends.  i phoned him this morning to tell him that I told C2's mom that we were coming and before C2's birthday we had to go to C's birthday.  The excitement he had on the phone was just as awesome as knowing people like Mikai.  Mikai loves people.  He loves to make them feel great about themselves.  He runs alongside them and hugs them when they are feeling sad.  I think he believes it's his personal mandate to help others feel great.  So this is Mikai's opportunity to show love and feel loved back.

Is this why we chose to become parents?  Because there is no greater joy than seeing humanity at it's finest - loving one another.

1 Corinthians 13: 4 Love is patient, love is kind. It does not envy, it does not boast, it is not proud. 5 It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. 6 Love does not delight in evil but rejoices with the truth. 7 It always protects, always trusts, always hopes, always perseveres.

8 Love never fails.

13 And now these three remain: faith, hope and love. But the greatest of these is love.

Whoops!

Alright, a little bit of time has passed.  I have never been very good at journal writing - well, consistent writing.

We met with the pediatric neurologist.  He wanted an MRI done as he knew it was neurological and just wanted to see the activity in his brain.  Skip forward to July 2014.  MRI scan is completed.  This was an extremely difficult time for me.  They took Mikai in, got him to sit on the table, and they brought me through this experience.  The worker's at the hospital were absolutely wonderful!  They played a game with Mikai in trying to "blow up the balloon".  You see, he was getting put under for his MRI and they needed to put a mask over his face in order to administer the anesthesia.  He was having fun and enjoying myself until they put the mask over his mouth and had me hold his arms away.  He struggled to get free and pry the mask off and started crying.  He wouldn't inhale and gave me the look of "why are you doing this to me!!".  The anesthesiologist was reassuring me, telling me not to worry as he won't remember much after this point.  Sure enough, Mikai inhaled and went limp.  It was like he was sleeping.  I promptly left, huge crocodile tears in my eyes to my husband and second son.  My husband took one look at me and said "I thought maybe it was I  that should have volunteered".  Seriously, amazing guy this man is.  After the MRI we took Mikai for a treat for being so good.  He bought Baymax and Hero action figures.

Fast forward three months - we received the results of Mikai's MRI.  The doctor sat us down and explained that they know the cause of the drooling, choking, and lack of speech.  They told us that it was highly unexpected and they were quite surprised.  They told us Mikai has a brain disorder called bilateral perisylvian polymicrogyria.  What this means is that on both sides of his brain, 3 out of 4 lobes are affected by areas of many small gyri.  The condition is apparantly quite rare and they aren't really sure what his life is going to look like, but they are hopeful because Mikai is so far advanced for having this condition.  We drive home, silent, for about 2 and a half hours.  It takes me until that night to become so over struck with fear that I feel like I can't breathe.  We were told not to google PMG so of course we do and the news is pretty grim.  The more I read about it, the more I want to stop.  So I do.  After about a month, we pick the pieces of our lives back up and learn to be thankful for what we know, thankful for how functional Mikai trully is, and blessed to be able to communicate with Mikai although it's restricted.

It has almost been a year since his diagnosis.  Our government has been extremely supportive financially of our situation,  Mikai has received his AAC (his communication device) and using it regularly at school.  Mikai's teachers have been so flexible and encouraging and it has been great to see him grow with them over this past year.  We are hopeful and blessed beyond compare.

Nothing more and nothing less

So we did the 6 week gluten free challenge and we saw absolutely no changes.  None even worth recording or talking about.  However, we as parents and even his teachers noticed that the more physical Mikai gets, the more clearly he speaks.  Strange?? Coincidence?? Symptom??

We ceased the gluten free diet and have put him on a regular diet.  The good news is we finally have our appointment with the pediatric neurologist tomorrow and I am beyond excited.  It feels like the beginning of our journey has finally begun even though it began long ago.  I am looking forward to getting some clarity, answers, and perhaps even some guidance (wouldn't that be nice in every aspect of parenting?).

So wish us luck tomorrow! I hope that Mikai is responsive and willing to do whatever the pediatrician requires of him.

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!

The beginning

My oldest son has never had difficulty expressing himself.  He has only had difficulty expressing himself verbally.  Most boys I have come across that are his age are one of two things.  Purposefully quiet or loud, energetic, and vocal.  Mikai is neither of these things.  He is a sensitive and caring boy who often tries to talk to people and no one understands what he is saying.  I am not talking about a lisp or a well I get most of what he's saying dialogue.  When Mikai speaks, no one knows what he says 90% of the time and my husband and I can understand him about 20% of the time.

So far what we know of his condition is that he suffers from low muscle tone that likely is localized in his mouth.  This is causing him to have little to no control of his tongue which in turn causes drooling, choking, and the inability to make concise sounds.

I spoke with a friend of mine today whose son also suffers from low muscle tone, but she has had the opportunity to speak with a neurologist about him.  She informed me today that her neurologist stated that low muscle tone is a result of a neurological disorder.  This news doesn't come as a surprise to me but what she stated next did.  She indicated that often times neurological disorders can be directly linked to some type of digestive disorder which is commonly a gluten intolerance.  She strongly suggested putting Mikai on a gluten free diet for 6 weeks and just watch and track the progress he makes.

So I wanted to start this as a means of keeping track and keeping sane.  Sometimes small every day gains get lost in the mundane and I don't want to miss this opportunity to share with Mikai if one day he is struggling or to provide hope and inspiration to those who may experience the same challenges.

Tonight we started the journey with gluten free pancakes.  I used a cup of packaged gluten free all purpose "flour" and added a pinch of salt, a tsp of baking powder, a tsp of icing sugar (we are out of both brown and refined), an egg, a tsp of vanilla and a cup of water.  The pancakes were really good.  Definitely better than rice flour pancakes I have made for my other little guy.

Eventually I will share how we have gotten to this point.  I also plan to post Mikai's gross and fine motor skills as a means of documenting what I know will be a positive journey.