This cute little guy is doing another EEG today. Now that he is off all of those crazy doses of seizure meds we are trying to figure out what these staring spells are and if any of them are seizures

And the verdict is........ both.

Parker is having both staring spells and seizures.  Most of them are staring spells, but at the end of many of them when his legs rhythmically kick- that part is a seizure.  I am not sure if I should be relieved to finally know... or sad.  But at least now we know.  We have been wondering and suspecting for almost 3 months now and we finally have an answer.  We can move forward from here.

There are a couple of stories that I want to remember.

What the ICU Doctor told me that changed my life.
"This child will change your life. She will change her siblings’ lives. They will grow up to be special people because they will learn early on that they are not the center of the universe. I see incredible siblings develop alongside children like Reese. She is a gift."

What my disabled daughter taught me about courage

To the typical siblings

https://www.yahoo.com/parenting/the-one-thing-we-actually-need-from-friends-as-120794721526.html

You finally get to see Parker in his gate trainer!!!  He has good walking days and not so good.  Yesterday happened to be great so we went outside and took a video. The day before I had taken his gate trainer with me in the car and while we were waiting for Devin to be done with preschool, we walked all the way up the hill and then all the way back down to the car (for half an hour).  I was squatting down behind him walking like a penguin and physically moving his foot for each right step. I kept thinking to myself over and over "I'm building neuron pathways.  I'm building neuron pathways..."  Maybe it helped???

A wonderful friend I've made (Molisa Murad) designed some amazing slings for her son that has CP to help with constraint therapy.  Now I have two- one for home and one for my therapy bag that I leave in the car. 

Happy 2nd Birthday to an amazing little boy. I'm torn between:

 "He's already two!!!!

and

"He's only two????" 

What a year. 2 years ago today we welcomed this sweet, adorable little boy into our family.  8 1/2 months ago we came within inches of losing him.  What a year this little boy has had.  He has come so far and I am so proud of how hard he has worked.  I love what my sister said a few months ago.  "How many babies do you know that have a work ethic?" Happy Birthday, Buddy. We love you soooooooooo much!!!

We've had a lot of second "Firsts" this year.  So here is his second first cake smashing.  

He LOVED it!!!

2 years ago today

1 year ago today

Happy Birthday Parker!!! We love you!!!

The motor planning and balance in this video is just incredible. We take so much for granted with development.. It is incredible for me to watch this video and see what comes so naturally. We are in the process of retraining Parker to move, sit, roll and do all these things, none of which comes naturally now. It is crazy. It gives me a whole new appreciation for our bodies and creation. To teach Parker to roll, we teach him to bend his top knee, move his hips, rotate his body, keep his arm from being stuck, lift his shoulders and get his hand up and out. But he is learning!!! I also have a whole new appreciation for the importance of repetition and building those neuron pathways in our brain. So I guess take a minute to marvel and appreciate these absolutely incredible bodies, our reflexes

 and all that comes so naturally.

Parker is doing awesome! He is sitting really well now.  My favorite way to sit and play with him is I sit with my legs out in front of me, bent and feet touching each other.  Then I place him at my feet facing me.  This gives him a tiny bit of support at his hips, and if needed I can barely touch his knee to stablilize him.  If he tips a bit, my legs are there and he can catch himself and correct.  I like him facing me for several reasons.  I can actually see him and make eye contact while we play. So many times in therapy I hold him while the therapist works and plays with him and I miss all of his facial expressions.  It is amazing to be able to play facing him.  I also like it because he likes to throw himself back into us over and over if he is facing out- just to say hi and make sure we are still there.  I love the hugs and all, but throwing yourself back is not a great skill to encourage.  This way if he goes back he just finds my feet.  It is amazing at how good you get at using your body to hold, support and catch him.

We also just got his awesome corner chair from Hope yesterday, a company through CA Regional Center that provides some therapies and equipment to borrow at home.  It is amazing to have so many wonderful people and resources on your team.  The chair is on the floor, super easy to get him in and out and offers just the right amount of support. You can strap him if needed, but he is sitting here without.  The chair the shape of a corner with a 3 in padded post between his legs. It is heavy enough and high enough to be difficult to tip over.  The tray is not attached, but again heavy enough to not tip over easily. It is pretty cool.  I am excited. :) They will also provide him with one at preschool next year- more on that later.

We got his new gate trainer (walker) a few weeks ago and we readjusted it yesterday.  I am in awe of this thing.  EVERY single part of it is adaptable.  We tweak this, move that, change that angle, or take everything off and turn everything the other direction. It is pretty cool.  I purposely helped the therapist as she changed everything so I could figure it out.  It is pretty cool.

So something HUGE that is new this week is that yesterday he started mimicking.  I shook a maraca, then he shook a maraca.  I shook it, he shook it.  This is HUGE!  Yes, he tried to eat it, but he also shook it- he played with it!!! He also mimicked clapping, hitting a tamborine, and he tried to mimic shaking his head.  It was so funny. He watched me shake my head, turned his head to one side... looked at me again...

In speech, he is beginning to vocalize more sounds and occasionally mimic.  He is particularly good if we pin his left arm so he has to talk instead of sign.  With that- he will consistently sign "more" by either hitting the table or. with prompting, his right hand.  He will also sign "Go!" by lifting and dropping his left arm, and a couple of times he has waved bye bye on que.

He is getting better at drinking. At therapy last week he had six good swallows of water with the "honey bear" cup and straw.  He has lip closure around a straw that we squeeze with minimal leakage.  He also used his lips to pull food off a spoon. He likes to get lefty involved with eating- using his finger to push the food around his mouth instead of using his tongue, or remove half eaten food to drop in the high chair for snacks later, or push food in if it comes out.... which is great and all.... but when we pin his arm or hold it, he uses his tongue, lips and keeps the food in his mouth!

Sweet kid.

I am reading this awesome book right now about how the brain heals.  It has mentioned "constraint-induced therapy" several times.  I am learning so much right now, but there is SOOOOOOO much more I want to learn.  This is one area.  We patch his eye regularly now and his eyes are beginning to work together.  We pin his left arm and ................ He uses his right!!! (or his nose, or his toes if the button is on the floor by his feet- tricky adaptable child).

I was feeling bad I had not been pinning it even more, but the therapist pointed out that he is ready now.  He has enough trunk control finally that he can sit without having to use his left hand for support so it is an ideal time to pin it lots. :) He will also acknowledge his right hand so much more now.  He will clap, use his left to help his right pull a lever, use lefty to help righty come to his mouth, he will go towards a toy or spoon in his right.  These are all little things but something!!!

I had a friend ask me today if no news is good news... And this time around yes!!!  But I don't want to just post and complain about the rough stuff.  I want to document and celebrate the good. And again- I am documenting this for us.

First off- Parker is doing great.

This week started out a little rough since most of our family went through the stomach bug. Sunday was our Anniversary and I cannot think of a better ode to 12 years than an amazing sweet husband who nursed half of us that were soooooooo sick without any complaint or ado.  I really married a wonderful man.  I knew that before, but I am reminded again and again. I saw a great story on Facebook several months ago when we were just beginning this journey that said the biggest quality to look for in a spouse is not who is the most gorgeous or even the most fun to be around, but someone who suffers well.

That is a unique trait, but I can testify an extremely important one.  And I managed to marry a wonderful man who suffers through a very hard time very well.  He has been such an incredible pillar of strength, stability, kindness, comfort, joy... We were talking over our anniversary dinner Sat night about what a miracle it is that we have come through this so close to each other and with our marriage very intact.  And I am not saying that to boast, just to document how incredibly grateful I am. I think one thing that has made the biggest difference is communication.  During those first weeks in UCLA, we talked many times throughout the day of the phone.  I did not answer my phone for anyone- except him.  Even if I was talking with a doctor, I would just put him on speaker phone so he could hear, too.  I think this was even harder for him- having to go to work most days, take care of our other kids, manage home and school stuff (Parker feel just 1 week after school started)- all the while worrying about Parker and not being able to be there or do anything. I was at least at the hospital and not having to worry about everything else. We traded places on the weekend, but he took the brunt of the home/work/school stress.  We thankfully had so much wonderful help at home with Grandmas and Grandpas trading off and staying long term to help the kids.  I don't know what we would have done with out them.  But even with so much help, he really had so much on his plate. And he handled it amazingly.

Even last night I was looking through some pictures for the kid's yearbook and came across some pictures of Parker the month and week before he fell. I showed my husband, in tears, and he just came over and put his arms around me and looked at the pictures with me.  I love this man I married.  I love him soooooooo much.

I've been thinking a lot and had some thoughts lately.  This accident has thrown us into a new world.  An amazing world of special needs kids and their families. Parker's main diagnoses are TBI and Cerebral Palsy.  May is Pediatric Stroke Awareness Month- which is what causes CP. I feel really strongly that the way this accident happened and the severe damage from such a tiny, minor fall-- resulting in a severe bleed and subsequent strokes-- that this was meant to be. And I see the first 15 months as a gift.  A gift where we could see and enjoy Parker's personality before his injury, as opposed to having a stroke in utero and being born with Cerebral Palsy. Not that I wanted this to happen.  No one does. AT all. But I choose to look at those first 15 months as an amazing gift and tender mercy. And I am so eternally grateful we got to keep him.

We got to keep him.

He is such a miracle and he is continuing to improve EVERY day.

He is still the same little boy and his sweet personality shines through.