Hit Over the Head by Reality this Evening...

I debated on whether to write this post or not.  It is not something I would typically broadcast to even my few friends let alone to the whole internet.  However, I've been thinking lately that I need to be a bit more unguarded with my posting and let those following Levi's journey know more about life with Levi.  I try to not post a lot of negatives and complaining, however, maybe it will show how much we need (not only want) the service dog for Levi if I let my guard down and let you all have a more personal look at this journey.

For those who do not know, we have our house fenced in.  We have 3 gate doors which all have locks on them.  The North and South gates have combination locks and the West gate has a clip lock at the moment but also has a combination lock that we've used.  I knew the South gate was a little loose, but the boys haven't messed with it in a long time so I wasn't overly concerned about it other that I knew we needed to fix it.

I was on the North side of the house with the boys.  Levi ran around the front of the house like usual.  It looked like he went in the house and that was it.  He randomly runs in and out of the house while we are outside.  After a few minutes I looked towards Kasen and told him I was running in to make Levi's supper since I had not seen Levi come back out, I assumed he was waiting on me.  While looking at Kasen a flash of blue out by my parents woods caught my eye. I focused and saw Levi.  He was so far away that I was terrified I would lose sight of him and not be able to find him.  There are things that happen that scares me with the boys.  I can honestly say I have never been so scared in my life.  I unlocked the North gate which felt like it took forever since it is a combination lock and I was trying to keep my eye on Levi.  I told Kasen to stay put and took off running calling for Levi which, of course, he gave me no response. He was on an exploration and had in his mind what he was doing and was not paying any attention to me at all.  By the time I caught up to Levi, he was over a hill and down by the creek and trying to figure out how to get over the creek.  I tried to keep my voice calm and talk to him about what he was doing knowing at any moment he could bolt.  He finally turned and walked towards me, as soon as I got my hand on him I lost it and cried.  We walked back up towards my parents and I had him go in their house and yard since I wasn't sure how he had gotten out of ours.  Kasen was awesome and stayed put like I told him.  I'm sure the tone in my voice was unlike anything he had ever heard.

The reality of what could have happened in this situation is hard for me to shake from my mind.  What if he had headed the other direction to the crossroads by our house where half the cars don't stop at the 4 way stop?  Not even 10 minutes before all of this, I had watched a big truck and trailer fly through that stop sign.  What if I hadn't seen Levi's blue shirt before he had went over that hill?  How long would it have been and how far would he have gotten before I realized he was out of the yard that I thought was locked tight?  The reality also hit me, that had I not seen him, my first thought would have been to head towards the road and the lake near my house. That would have been the opposite direction he had actually went in!  How far and how hurt could he have gotten while I was searching the wrong way?

Levi's service dog will be trained in tracking.  It will be trained to follow Levi's scent.  Other 4 Paws families have posted updates from their service dogs and the majority will say that their service dog found their child in a location that they would not have thought to look.  Those situations could have ended horribly had they not had their service dog.  Today reinforced that Levi needs this service dog.  I need this service dog.  If I had been able to give Levi's service dog a command and followed its lead to its boy, I have no doubt there would have been stress, but nothing like what I felt today.  Today it was all on me.  His safety and well being all rested in my hands and it was terrifying.

This is the 2nd time in 4 years that Levi has gotten out of our yard.  The first time he did not get very far and this time I still don't know how he got as far as he did other than he went around the back side of the yard and I wasn't paying any attention to that side because I thought he was in the house.  I get to a point where I think after 4 years (since the last time he got out of the yard), I could let my guard down and know what Levi is going to do.  Then he does this and knocks me back into reality.  I know I look like a huge helicopter parent with Levi.  How can I not when every time I think I know what he will do, he proves me wrong?   I even check all 3 gates every time we go out to make sure they are all locked.  I was just telling someone today how you can't get too comfortable with Levi.  You can't think you know what he will do even if he does well 9 out of 10 times, it is that 1 time that will knock you back into realizing you can not get too comfortable.  Nothing like this to knock me upside the head and remind me I need to take my own advice.  Levi had managed to push on the South gate door just right to make it pop open.  I haven't seen him even glance at that gate in a long time.

I would love nothing more than to give Levi some independence, some slack in the "apron strings" and let him explore and be a typical kid.  However, he is not a typical kid.  He is a child with multiple diagnoses which include autism and a chromosome deletion that are both known for impulsiveness, no sense of danger and wandering.  The best way for me to be able to let go a bit is with his service dog.  Most deaths of individuals with autism are from drowning after wandering because a lot of them are drawn to water, like Levi.  If I hadn't felt the pressure to reach his requirement ASAP before, I sure feel it now.

Never A Dull Moment With Levi

On April 19th, we took Levi to Riley Hospital for Children in Indianapolis for a 24 hour video EEG. 

 

He did really well.  The Video Tech did have to come tell us once that they were having trouble keeping the camera on Levi because he was moving around so much, but he was in a great mood the whole time.  Thank goodness for new Bear in the Big Blue House movies!  

So, Wednesday I get a call from the hospital, after playing a bit of phone tag.  At first, she was telling me that Levi is at increased risk for seizures and his brain waves were abnormal.  So, I innocently asked "so exactly what they were in 2010 when we did this the last time?" She says, umm no.  It is worse than it was in 2010.  He now has an increase risk of having multiple types of seizures and they will probably be difficult to control if they can be controlled at all.  Of course!  Nothing with Levi is simple.  Why I would think that results from his EEG would be any different...well I should know better by now!  The nurse said what we have been seeing were most definitely seizure activity.  Twice she said "if" and then caught herself and said, there is no "if", it is definite.  They wanted us to move Levi's appointment up to May 3rd, but we would be seeing the Nurse Practitioner whom we have never met.  Levi has always seen the Neurologist himself.  After talking to the nurse for a bit, she said that since we will be talking about medication and a plan for Levi, she thinks it is important for us to meet with the Neurologist himself whom we are comfortable with.  She checked with him and he said it was fine to wait until Levi's May 17th appointment.  We were told if Levi has a seizure that concerns us, to take him to the ER. 

I am more sensitive now when looking at Levi.  Trying to notice if he is having seizure activity or just ignoring me is nerve wracking.  I have made a seizure tip sheet for Levi's therapists that work with him at home so they have an idea of what to do if Levi has a seizure.  It is hard because we have no idea what to expect with this. There are tons of different types of seizures.  Hopefully, we will get more specifics at his appointment on the 17th.  

In the meantime, seizure alert has been added to our contract with 4 Paws for Ability.  Levi's service dog, when it begins advance training (after we reach his $13,000) will be trained in seizure alert.  While it is not a skill that is promised to be perfect because it is a difficult skill to train, it is one that numerous families have experienced with their own children and it looks as if 4 Paws' track record for seizure alerting is pretty high.  This could be huge since we will never know when he will have one or what type it will be.

Trying to not count my chickens before they hatch!

Have you heard that saying before?  It means to not count on something happening until it happens.  That way you are not disappointed if that something doesn't happen.  I find it extremely difficult Not to count my chickens before they hatch right now!  We are at $7572.00 for Levi's fundraising!  We have one friend who has offered to have her husband dress up like a puppy dog if we raise $300 (individual donations).  We have another who is donating $1.00 for every mile she runs in April to Levi's Fundraising.  She has gotten 11 more to join her!  I have another friend who has taken a bunch of Levi's fundraising shirts and is trying to sell all of them for us.  I have another friend who is working on an event for Levi and we're planning another Bouncin Barn event.  We also have a church who is waiting on me to make an updated video of Levi and they will do a fundraiser for him. If/When all of these donations come in, we will be so close to Levi's requirement!  Surely we can come up with a way to reach it!

 

My hope is to reach Levi's fundraising requirement by his Birthday.  Why?  Because, that should put him near the 2014 Summer Classes for training.  That would be the ideal time for us to make the trip over to Ohio for 11 days.  Chris would be able to take vacation time off of work, Kasen wouldn't have to miss any school, we wouldn't have to worry about driving in snow/ice to get there, etc.  It would be the best time for us to go.  Just knowing our class is scheduled will be huge for us.  Something concrete we can look forward to.  Knowing the light is at the end of this tunnel and Levi will soon have his furry sidekick to help him.

We started this fundraising adventure on September 23rd when Levi received his fundraising packet from 4 Paws for Ability saying he had been accepted.  However, we didn't have his first fundraiser until November because I was overwhelmed and scared to do this.  What if people think it is a scam?  What if no one offers to help?  I can't do this by myself!  About 4 1/2 months later, and we are so close!  I am constantly amazed of who all has helped us get to this point.  So many people who don't know my family have donated to help a little boy who they don't know except through a newspaper article, a news story or a friend.