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.

We just got this mat for Parker. We have been contemplating it for a while and saving up, but these past few weeks both OT and PT have been using it a lot so we decided to get it. We've already used it so much. It is great for crawling, scooting downhill, rolling with his weak side and so many other things. We have used it several times already. And my gymnast girls don't really mind it, either...

Parker's favorite song is "I am a child of God." He is getting so much better at matching pitch. His language center of the brain was annihilated, but he can sing. He responds so well to music and has since his injury. We started music therapy this week and I am really excited to see his progress.

There was a cute little boy toddling around Relief Society at church today. He had blonde hair and blue eyes and he even snuck over and played the piano. Parker used to do that. I cried today. 15-16 month olds will always have a special place in my heart. 

We are getting ready for a trip to my sister's Labor Day weekend. Parker fell on a trip Labor Day weekend.

I just got a sweet note in Messenger last night that someone sent me when we were in the PICU and I didn't get until just now.

My other sister has a dear friend that just lost a family member to a fall and a TBI.  They buried him this week.

My baby fell two feet just shy of 2 years ago.

We are doing well... mostly.

Tonight I had a really sweet conversation with my six year old son. He was waiting for me to read him stories. As I was giving Parker his meds, Devin said "I wish Parker didn't fall."

I asked him if it was because he misses his playmate or if it's because bedtime take so long, or both. He said both. He said he wishes he could hear Parker speak and hear his voice, like his cousin that is the same age. He wants to hear his voice.

We talked for quite a while, and we cried together. I told him about the little girl that fell the same week that Parker did that did not survive, and how grateful I am that we got to keep Parker. And that I would rather have Parker with us any day, even if that means lots of therapies and longer bedtimes because of meds. Parker is sweet and happy and he loves his brother and sisters. Even if he can't ride his trike at the park.

I also talked to him about when he (Devin) was 2 years old and got really sick and I took him to 2 doctors and ultimately the ER. They gave him heavy duty antibiotics that did not work, and ultimately they did surgery. I was speaking to the surgeon after the surgery and asked what would have happened I hadn't brought him in. He said " he would have gotten sick enough you would have brought him in." He was sleeping 22 of 24 hours. How much sicker could he have gotten???

I am so grateful for the spirit that prompted me to go wake up my little Devin that day instead of letting him sleep. He was burning up and he pointed to his neck and said "neck hurt." There was a large bump on his neck and red lines and my mother's instinct said "hospital NOW."

The surgeon said if we had waited too long the infection (he had a retro phalangeal abscess) could have burst and spread to his heart and lungs and we could have lost him.

I was telling Devin just how sad and devastated I would have been if I had lost him 4 years ago and how much I love him, and how grateful we did not lose Parker. We were both crying.

I love my kids so much. And my husband. And I am so grateful for hospitals and modern medicine and that they have saved my 2 of my children's (and my husband's) lives.

I am so grateful.