Tuesday, June 9, 2015

Levi's genes

Yesterday we had a follow up with the neurologist to review some blood work and his EEG.  It was an interesting appointment, and amazingly I understood everything the doctor said to me (thank you FDSCI 205 class on introduction to DNA that I'm currently taking).  The doctor ran a test for something called the MTHFR gene (I know, I almost burst out laughing too.  Somebody apparently had a sense of humor while making that acronym.)  The doctor says she calls it the Mother Friender Gene...yea, I'll try to think of that when I see it.

Methylenetetrahydrofolate reductase, is the enzyme that turns folic acid (which can not pass the blood brain barrier) into folinic acid (which can pass the blood brain barrier, and is essential for normal development.)  1 or 2 affected genes can lead to learning disabilities, mental disorders, schizophrenia and neural tube defects like spina bifida).  It also increases the risk of blood clots, heart disease and chemotherapy toxicity due to hyperhomocysteinemia.

If someone has 1 affected gene, the 2nd gene may take over and work fine, or there is a good chance that the 2nd gene isn't' able to carry the load and the person ends up with Low levels of folinic acid.

If you have 2 affected genes, well, then your up a creek because you likely can't make any folinic acid at all.  

Levi has 2 affected genes.  Poor kid.  
At this point the treatment is high doses of folinic acid.  
It will be interesting to see if we notice any changes.

Saturday, June 6, 2015

Les Miserables

"Mom, Can I watch Les Miserables?"  Georgia says
"!!!  You don't even have to ask :)"
(I think she could ask to watch it at 2am, and I would hop out of bed and watch it with her :)

Les Mis is one of my all time favorite musicals.  A local theatre just hosted a production and I went to see it with a group of ladies.  It was fantastic...and remembering that I saw it about Georgia's age, I had to take her to see it.  She loved it.

So last week Georgia asked if she could watch the movie (she saw it last year, but since seeing the play, wanted to see it again).  I dropped everything I was doing and sat down to watch it with her.  I love that she loves it.  She asks lots of questions wants to know the story.  We talk about the different scenes and what is happening.  We talk about the lessons, Forgiveness, Redemption, Hope, Courage, Love, Mercy, Freedom & Patriotism.  One of the most enjoyable parts of being a parent is sharing times like this with our kids.

Thursday, June 4, 2015

School's Out For Summer!

This morning I had to introduce Georgia to some... ah-hem...culture by playing Alice Cooper's, School's out for summer song during breakfast.  Then since she was familiar with it, I was able to play it as she opened the car door at pick up today.  It was so funny, and she rocked out.  

She is super happy school is over and is eagerly telling everyone that she is now a 4th grader....say what?!....yes, a 4th grader.  

I asked her what grade has been her favorite so far (K, 1, 2, or 3)  She said that she has liked them all for different reasons, but even though she liked 3rd grade, she is glad it is over so she doesn't have to see "D" anymore.  (That would be the boy who has been tormenting her.)  Well, at least not for the next 2 months.  

Her favorite day of the school year was their trip to the tide pools last week.  I unfortunately don't have a picture from that, but I do have one from her penpal picnic.


Today I got to go to Levi's school for a Last Day of School Party.  We ate food and watched a slide show and had a great time.  I got to talk to another Mom, which is always great.  Levi's Aide, who is totally awesome, got some great pictures of him on their field trip to the bowling alley.  They rode the Train, which Levi loved.   

 Levi and 'Mickey' looking out the window

Levi and Aide (isn't she just the cutest!)

Tuesday, May 19, 2015

Mama Bear

From time to time we are asked to participate research studies for Autism.  We hope that our contribution will help move the research forward and in the process perhaps get some good information along the way.  Over the years, we have been in several.  Sometimes it is just for the kids, sometimes it is all of us.  They vary from having the kids look at objects on a computer screen to track eye movements, to having them play with various toys so they can document how the toys are being played with.  Other times it is questionnaires or diagnostic tests, and occasionally it requires a blood draw from all of us.

Yesterday we went down to children's to be part of 2 research projects.  This was nice, in that they work together, which cuts down on the time/visits involved.  They each required a blood sample from each of us.  The last time we had something like this was when the kids were 3.  They are looking at specific genetic markers, variations and mutations in DNA and they may also look at mitochondrial DNA.  Blood draws usually aren't a big deal.  We put a little emla cream on the kids, and bing bam boom...no big deal.

Well, that is how it should have been.  The technician doing the draw was an employee of Children's Hospital here, and to be quite honest, all my experiences in blood draws at Children's have been that they have excellent technicians.  This time however, not so much.  Having had my fair share of experience, not only with myself, but with Levi and on the rare occasion with Georgia, I feel like I know how to tell the good from the bad.

Levi went first.  She got his vein the first try, which was good.  However, partway through, it stopped flowing...so she starts moving the needle around and then she pushes it in farther.  Oh man, the feelings that came over me when I saw her doing what she was doing....  Luckily, Levi was fairly distracted by the movie and didn't complain too much.

Then comes Georgia.  Georgia can't even remember the last time she has had blood drawn, which means, that it has probably been a while.  A couple years at least.  There has never been an issue in the past...but this time....well it wasn't good.  The Technician gets the 4 vials that she needed.  She reaches over to get the gauze to apply as she removes the needle and in the process Georgia's arm bends a little and Georgia makes a funny noise.  All still seems to be fine, she applies the gauze and pulls out the needle.  Then she tells Curtis to hold her head.

Now I'm standing behind Georgia next to Levi...so I can't see her face, but her head starts to wobble and drops forward.  Curtis leans her back and I step forward realizing that she has passed out and hold her head.  I look down, and her eyes have gone completely black (eerily reminding me of times that Levi's eyes have done the same thing.).  Her pupils have taken all but a sliver of the blue iris.  She starts shaking and I have that moment of panic.

I look at the Technician and ask, "Is she having a seizure?!"  
She says, "Well, kinda."  
I shoot her a look and said, "It either IS or ISN'T, there is no KINDA!"  
"Well, yes, it is a seizure, but she is okay, see, it has stopped now,  Sometimes it happens if they haven't had enough to eat or drink."  

The Tech who had not impressed me with Levi, and then when Georgia's arm bent, really didn't impress me now.

In the moment I'm thinking, What the heck!  We are here trying to help people and researchers...maybe we need to stop participating.

The student researchers that were in the room, said, that yes, this is not uncommon and happens from time to time when someone gets their blood drawn.

But I'm still thinking, She had a seizure!  Holy Moly, people....I'm kinda freaking out right now, and ya'll just need to step back and not touch Georgia.

Georgia of course, was very tired from then on out.  Despite the shortness of the seizure, it defiantly seemed to drain her.  She was white as a ghost and dripping with sweat.  They did get her some water and a Popsicle which made her happy.  She seemed relatively unaware that anything happened  and only complained of feeling not very good and being hot.  We haven't told her anything more than just her fainting.  

Well, I felt and still feel terrible about it.  I hardly slept last night.

After we left we got dinner and froyo.  She loved that, and her color finally came back with some food in her tummy.

So here is my question.  Has anyone else experienced more than just fainting from a blood draw?

Thursday, May 14, 2015

Levi's Mother's Day Gifts

It all started on Friday when I picked him up from school.  The teacher handed me a little pot with 2 pea plants in it for Mother's Day.  How cute is that.  As we turned and walked to the car Levi said, Ma, Ma, Ma, Ma......  Oh melt my heart.

Sunday after church, I was working on some paperwork at my desk.  Levi came and looked at me.  I asked if he needed help and he turned and ran...so I followed after him.  He stopped in front of his computer.  "Do you need help?" I asked.  He grabbed my hand and pulled it to the computer.  He wanted me to play or help him play the game.  So I sat down on the chair and started playing.  Then he climbs in my lap.  He takes over playing, and it really just seemed that he wanted me there with him.

Monday, again, I'm at my desk doing homework.  He comes and looks at me.  I ask if he needs help and he takes off and runs to the playroom.  He plops down on the floor by the little people barn and starts pushing the button for the horse sound.  He looked at me again and it just seemed like he wanted me to play with him.  So I did.

The next day at bedtime we are getting pajamas on, and Levi picks up a Bob the Builder book, plants himself right in my lap and pulls my hands up to hold the book.  We read the book together and he opened the flaps to see what was underneath.  After he climbed up in bed and went to sleep.

Levi has always been very loving, but he doesn't always prefer such personal interaction.  So it makes these little moments with him, tender and special.

Saturday, May 9, 2015

Burn out, Acceptance, or Pacing the Marathon

I have been contemplating this thought for many, many months now.  If you haven't noticed, I've taken a break from talking about Autism.  Most of the time, I feel like, what else is there to say.  It has been a while since I have read a book about bio-medical options.  I haven't gone to a conference in a couple years.  I have read a couple books written by people with Autism, because I feel like it gives me a little understanding of what Levi might be thinking or feeling.  But otherwise, I've just been in chill out mode.

As I've taken a step back, I think one of the greatest epiphanies that I have come to over the last couple years is that, Levi, understands, is capable, is really tired of ABA, is a total boy (jumping on the bed, launching onto the bean bag....yea...little heart-attack over here in mommy corner!), is super loving, wants to be happy and wants everyone else to be happy too.

Right after the diagnosis 7.5 years ago...the first thing we found was an organization called TACA.  I love TACA.  The first meeting I went to, they talked about how Autism is not a race, it is a marathon.  A marathon where you need to pace yourself, so you don't get burned out.  Because really for the majority of us, it is a life-long thing.  Georgia, well, she was our little bonus child.  Most kids do not recover as quickly and as well as she did.

So over the years, I thought I was pacing the marathon.  Well, it turned out that I wasn't.  Not only was it bad for Levi, but it was bad for my family and it was bad for me.  So while we have kept several things in place, diet, therapy, school, etc.  I had to cut back.  I was making myself crazy trying to cure him (which was costly and time consuming).  So now I feel like over the last two years, I have come to have a much healthier relationship with Autism.  No really, it has been like a 12-step program (accept the things I can not change, courage to change the things I can, and the wisdom to know the difference...kind of thing).  I am no longer the conquering soldier...but the marathon runner.
So what is different?  Well, we continue to monitor his health and see the related specialists.  We deal with problems as they come.  We always work on improving when it comes to skills...but it is no longer about skills that have little meaning to him.  You know, the ones like drawing lines, naming letters and stacking blocks.  Instead, we find things that make him happy, and offer them in a meaningful way.  Overall, my motto has been no over-doing it, no over-scheduling.  

Potty training is still going well, I'm so happy.  What a long journey it is, but well worth it.  He is now asking on occasion to wear underwear.  Which I think is pretty flippin awesome.  (Way to go, bud!)

Moving forward, I am focusing on getting more use out of his IPAD talker, transitioning out of ABA (he is on his last contract with the state) and working toward an improved diet based on Weston A Price principles.

Will we still work on bio-medical treatments...oh sure.  If something promising comes up, absolutely.  For now I keep up with Autism treatments through a magazine called The Autism File, a blog called Age of Autism and other various websites.  We have tried a whole lot over the years, but not much has been helpful for Levi, and so we have decided instead of doing a shot-gun approach, to be more targeted in what we try in the future.            

Thursday, May 7, 2015

Georgia, Chores & Chickens

So about a month ago, Georgia and I switched chores.

Her chore was to let the chickens out in the morning, close the coop at night and just make sure they and the cat had food and water.  Since the chickens have waterers and a large feeder, it isn't a big deal since you don't have to refill them everyday.  All in all, we are talking probably about 5 minutes a day, may 10 at the max if you have to refill everything one day and collect the eggs.  

For me, I take care of most other things in the house...but in particular, I'm always doing dishes.  That is a chore I very much dislike, and never ends.

So I noticed over the course of a couple months that she was really having a hard time with her chore, and seemed to be tiring of it.  An idea from the Love and Logic book popped in my head and I asked her..."Hey Georgia, do you want to switch chores with me?  I can take care of the chickens and you can do the dishes."  Well, she jumped right on that, and in my head, I'm laughing all the way to the coop.  I have just passed off my 20+min chore for a 5min one.

Well, good ol' Geogia, you know she really tries to hold out, and she did for several weeks of doing the dishes...until finally one day last week she asked, "Can I take care of the chickens again?"  Ahhhhh....the realization had come...doing the dishes was a lot more work than those chickens.  So we switched back, and so far, so good....she has been keeping up with the job.

Now I do realize that it would be best to have a chore rotation, and I am working on that.  I figured it would be best to finish up the school year and roll that out with summer break when there is a little more time available for me to teach her the various chores.  And of course, I do have to give her credit, that if I ask her to do something, she usually does it and rarely puts up a fuss.  So if I ask her to wipe down the table, empty the dishwasher or clean her bathroom, she will.  Changing her sheets took a while, but she doesn't complain to much about that anymore.

So I'm curious, what works for your family and chores?