Speech. Just to document, Today Parker was mooooooing. I had an app with cow sounds and he proceeded to ooOOOoo and laugh and ooOOOoooo and laugh. He also repeated "ba" on command several times and said ba for ball! He would sometimes say ba inconsistently 2 years ago and then lost it and then nothing for 2 more years. That's why I love when I can capture stuff in video because he will mimic himself!  And he can say mmmmmmm and mmmmom and mmmamama. And he can say Hi! And he says hi appropriately. He can sing to the tune of I am a child of God "Aye aye aye aye aye". He loves to sing and can sing pitch perfectly. He now knows the tunes to I am a child of God, Happy birthday, Jingle Bells, Ode to Joy, Twinkle Twinkle, March on D E and F, and the Sound of Silence. And several songs from Trolls. And he signs thank you and blows kisses on command. He also still signs "more" and "go" and he is getting so consistent in nodding yes and shaking how head no. Speech last few months is finally taking off!!!! After 3 years of almost nothing!!!! Yayyyyyy!!!!

I read this on Facebook tonight and needed this. I figured this was a great way to save it.

WHY MOMS OF SPECIAL NEEDS KIDS ROCK!!!

1. Because they never thought that "doing it all" would mean doing this much. But they do it all, and then some.
2. Because they've discovered patience they never knew they had.
3. Because they are willing to do something 10 times, 1,000 times if that's what it takes for their kids to learn something new.
4. Because they have heard doctors tell them the worst, and they've refused to believe them.
5. Because they have bad days and breakdowns and bawl fests, then they pick themselves up and keep right on going.
6.Because they manage to get themselves together and out the door looking pretty damn good. Heck, they even make sweatpants look attractive.
7.Because they are strong. Who knew they could be this strong?
8.Because they aren't just moms, wives, cleaners, chauffeurs, cooks and women who work. They are also physical therapists, speech therapists, occupational therapists, teachers, nurses, researchers, coaches and cheerleaders.
9.Because they understand their kids better than anyone else does - even if they can't talk or gesture or look them in the eye. They know. They just know.
10.Because just when it seems like things are going OK, they're suddenly not, but they deal. They deal even when it seems like their heads or hearts might explode.
11.Because when they look at their kids they just see great kids.
This is to all the moms I know that ROCK!!!!!!

This marks our 2nd week of CIMT or Constraint Induced Movement Therapy.  No he did not break his arm.  The cast is intentional.  Because of the extensive damage to the left side of Parker brain, if left to its own devices Parker's brain would not even know the right side of his body existed. But he is not left to his own devices and he has an incredible team of therapists, teachers, and a family with a mother that will not give up on that right hand.

I have looked into this therapy for a long time and knew it was coming, but we had to be in the right place emotionally to take it on (something about 8 months of seizures, moving across the country and moving twice in one year...) And now finally we are here!  And it has not been nearly as bad or as stressful as my mind made it out to be.  The hardest part is that unfortunately we had to discharge from one of my favorite OTs ever (I have a few- don't worry if you are another of our favorite OTs) and switch his OT for 3 months to Gillette hospital for this therapy-- but this is what they do. This hospital is incredible and the whole hospital is designed and set up for kids just like Parker.  And we live 17 minutes away.  People travel from all over the world to come here, so we might as well take advantage of what they have to offer. But I really miss my OT.

So the idea of CIMT is that you cast the good hand all the way to his shoulder down past his fingers to constrict the good arm and force the brain to use the right arm.  A permanent cast for 4 weeks. (As opposed to a cast that can be removed for baths, etc) That is the premise. Unfortunately, my tricky adaptable child has adapted quite well to having a club for a left hand is still functioning quite well.  But we are trying!  And there is progress- and any improvement at all will be so worth it.  We actually plan to do this therapy once a year for as long as he will tolerate it and hopefully continue to see improvements.  Here are some pictures and videos for your info, entertainment, or however you choose to enjoy. :)

Hands down, meal time is the best.

This kid is highly motivated by food.  He is my child after all.

And don't you love his cheering section?

Sometimes when Mom is not feeding you fast enough, you have to take matters into your own hands.  

Or face...

And did you know that casts make great bats?  Especially when the arm is not actually broken?

I sure love this tricky adaptable child of mine.  I love him to pieces.

Parker had a fabulous speech session today.  I can't explain how long we've worked on him sticking his tongue out!

1 year ago Parker was having 20-50, sometimes 100 seizures a day.  1 year ago he was on the ketogenic diet, an extremely strict and stressful high fat diet (4 parts fat to 1 part carb) where everything had to be measured to the 10th of a gram to try to control the seizures.  1 year ago we had nurses come every day to help with the seizures, the therapy, the diet, the medication.... Parker had no desire to walk, move, roll, crawl, or sing. 1 year ago all that changed.

On November 2, my husband started a new job for Medtronic in Minnesota. (We lived in San Diego.)  

On November 4th I went to an Epilepsy Conference near Disneyland and asked ALL kinds of questions.  I spoke with the The Brain Recovery Project and learned even more about hemispherectomies. I learned about service dogs for seizures, and tracking devices that track GPS and can sense seizures.  I asked about vagal nerve stimulators and new medications... 

But mostly I spoke with several leading neurologists and neurosurgeons face to face. I asked SO MANY questions about 2 things.  

• A new drug called Sabril or Vergabatrin that has a black box warning from the FDA that it can cause permanent vision loss that was sitting in a box at my house. 
• Hemispherectomies- A surgery where they remove or disconnect half of the brain.

I cannot express enough how incredible it was to go to that conference.  I came home with a plan.   I sent his records to Mayo Clinic and 2 other leading hospitals in the area for hemispherectomy consults. We were moving to an area with some of the best hospitals in the world and we were going to take advantage of that.  

On November 5th I gave Parker the new drug to rule it out.

On November 6th he was seizure free.

He was seizure free.  And has been for over a year.

One year seizure free.

You have no idea how incredible that is unless you have seen a loved one have seizure after seizure with devastating results.  Unless you have seen your little boy slowly slipping away before your eyes.  Your little boy who had come so far... only to slowly lose it little by little.  To watch him stare off and know a seizure was coming... and being completely powerless  There was nothing I could do but brace him and brace myself. Over 8 months we tried 8 different meds.  After 3 meds it is considered intractable epilepsy and meds are very unlikely to work.

I will forever be grateful for Dr. Shifteh Sattar that was willing to try so many meds and listen so incredibly well to a mother.  I will forever be grateful to UCLA and Dr. Shaun Hussain who correctly diagnosed Parker's seizures as infantile spasms, even though he did not fit any of the typical criteria.  Infantile spasms is a devastating type of epilepsy that deteriorates into even more devastating types. They are treatable if caught early, but Parker's were not.  He had seizures for 8 months before they were diagnosed correctly.  That seems so short now, but it was a devastating 8 months full of multiple hospitalizations, titrating up and down off many different meds, trying so many different combinations, and so many different hopes just to have them dashed over and over.  It was hard.

But that was a year ago. A life time away.  

And he is doing so great now! He is happy, funny, learning to communicate through signs or an iPad, he is rolling all over, learning to creep and crawl, puts weight on his right hand, sucks through a straw, is getting his dimples back, can propel himself in a wheelchair, plays with toys, can match pitch and rhythm, loves music and in every way is a delight. We are so glad we got to keep him.

He will always be at risk for seizures. Always. But for now I am enjoying the respite and enjoying my little boy.

Here are some recent videos, but I don't know how to make then work on phones well. The next post has lots and lots of new pictures, though!

 Parker with his preschool teacher

 So handsome after a bath.

Riding the bus to preschool somedays.

 We hung out while the rest of the fam went through a very muddy corn maze.

 I really really love this kiddo.

Resourceful kiddo found the laundry!  Mmmmmm unlimited supply of deliciousness!

 Roll! Roll! As fast as you can!  You can't catch me I'm the Parker man!

 I drink out or a straw now. No biggie. OK REAL biggie

The wonderful things about Tigger!!!  I bounce bounce and bounce and bounce and bounce fun fun fun fun fun!

It has been 2 years since Parker fell 2 feet from a picnic bench and hit dirt. 2 years since he had a massive bleed under the dura in his brain that altered our lives forever.  Let's just say I am grateful to be on this end of 2 years. He has come so far.  I am not sure if I have explained this here, but Parker lost the entire left hemisphere of his brain due to the bleed and subsequent pressure. He had an additional stoke on the right side as well as a stroke on both sides of the front and damage down the middle. He lost almost 3/4 of his brain. He should NOT have survived.  And he did.  Thanks to the prayers of so many of you, the incredible doctors and nurses at UCLA, his drive and spirit and so, so many miracles.  I am so grateful to my Heavenly Father that we got to keep him.  He started completely over 2 years ago as less than a newborn- with no neck control and no reflexes to help him along the way. He has come so far.  I love two quotes that my sister Brittany has used to describe him. "How many 2 years olds (now 3) do you know with a work ethic?" and "tricky adaptable child." I absolutely adore my tricky adaptable child. He amazes me. We got to keep him.  And we are so so grateful.