What Happens When Levi Reaches His Fundraising Requirement?

I've had a few people ask me what happens when we reach Levi's fundraising requirement.  So, I thought I'd write this post with the hopes that my next one will be announcing we've reached his goal.

Once we meet Levi's fundraising requirement, 4 Paws for Ability will notify us of what training class Levi will be in.  We are assuming Summer/Fall 2014.  I will be taking hours of video of Levi, his environments, his behaviors (the good and the bad), anything that his service dog may encounter once it comes home with us.  A Service Dog will begin advance training and the trainers will imitate Levi's noises and behaviors so that the service dog is accustomed to them before ever meeting Levi.  While this training is taking place, we will be fundraising for our travel expenses.  Our family will go to Ohio for 2 weeks of training with the service dog.  We will have to pay for the hotel, gas, food, etc while over there.

We will not know what dog has been chosen for Levi until right before his class date.  His service dog will be chosen based on personality and ability to meet Levi's needs.  Not by gender, breed, etc.

Reaching Levi's $13,000 fundraising requirement is just the first part of this journey.  However, it will also allow us to see the light at the end of the tunnel.  Once we have a class date set, we will be able to count down to meeting Levi's service dog.  Something more concrete to look forward to.

Stay tuned because I have a feeling our big "We've Done It!" announcement will be coming soon. 

Leave it to Levi

Today Daddy and I took Levi to meet with the Neurologist to get more specific information on Levi's most recent EEG.  At least, that was what we thought would happen.  Leave it to Levi to keep people scratching their heads.

We were in the waiting room for over an hour and Levi was getting more anxious and loud.  One of the nurses finally said they could put us back in a room if we like but it may be awhile until the Dr would be available because he was running behind.  Levi did awesome getting weighed and measured.  Once in the room, he became anxious and Daddy spun him in the Dr's chair for a bit and then tried to keep him from banging on everything in the room.

The Dr came in and we started talking.  He asked about how often we see seizure activity out of Levi and I told him that ourselves and Levi's therapists notice episodes every once in awhile and they have all been the absence seizures (where it looks like Levi is staring off).  The Dr tells me that Levi has him a little uncertain because he does not present the way children who have the same abnormalities on their EEGs present.  Basically, children who have the type of EEG result that Levi has are already having multiple active seizure types.  We can only confirm one type and it is occasional as far as we know.  By his EEG report, Levi should be having multiple types of seizures that we can see.  

This should not surprise anyone who knows Levi.  He NEVER follows what is "typical" for anything. Never!  So, our plan is to start Levi on a very low dose of seizure medication.  First we had to have blood work done and once that comes back clear, we will start.  In 2 weeks he will have more blood work and then blood work every 6 months while on this medication.  Hopefully we will be able to get Levi to take the new medication without issue.

The Neurologist told me to not assume this medication will prevent seizures.  It may only reduce the frequency of them happening, but that he can still (and he said Levi probably will eventually) have a larger seizure happen. 

So, other than being told that Levi's EEG shows he should already be having multiple types of seizures, we don't know much more than we knew before.  The Neurologist said all we can do is treat Levi by what he is presenting with and address things as they come up.  I don't do well with waiting and seeing when it comes to the boys.  I had hoped to have a little more confirmation and concrete information.  But, I should have known that wouldn't happen with my Levi.

11 days until Levi's Birthday!

I have had others telling me that donations are heading into 4 Paws for Levi's fundraising, if all of those get sent in, it is looking like we have less than $1,000 left to go to get Levi's fundraising completed so a service dog can start advance training and Levi can be scheduled into a "class"!

I will be touching base with 4 Paws later this week to see if any mail-in donations have come in and to get Levi's total so far.  Ideally, we need Levi to be placed in a Summer 2014 class, which they are currently filling, as that is the best time for Chris to be able to take off work to go with us.  So, we are really pushing the fundraising right now.

Please continue to share his information with your facebook friends.  Since we are on a time sensitive mission (and so close to Levi's goal!) I have a request to make.  I know donating online is easier, however, the firstgiving.com site that we use for online donations does not release the funds to 4 Paws until the 15th of the Month AFTER you donate.  So, if you donate online on May 12th, 4 Paws will not see it or count it until June 15th.  If at all possible, please mail it to 4 Paws for Ability :

4 Paws for Ability

In Honor of Levi Walker

253 Dayton Ave

Xenia, OH  45385

By putting "Levi Walker" on your check's memo line and mailing it in, it counts immediately in Levi's fundraising total.  If you use the "contact us" link on Levi's blog or message me through Facebook, I'd be happy to email you a donation form that you can send in with your donation.  We appreciate donations in any way, of course, so if you rather not mail, then feel free to donate online.

We still have the Tupperware fundraiser going on until Levi's Birthday (May 22nd)- You can find the information here: Levi's Tupperware Fundraiser     40% of each item goes to Levi's fundraising.  It will even tell you as you are ordering how much will go to Levi!

On May 20th at Terre Haute Bowling Center, from 6p-8p, we will be having a Thirty-One Bingo and a Bowling fundraiser for Levi. Thirty-One and Bingo Fundraiser Event Page
There is a link in the description of that webpage if you would like to order online.
Bingo is $10 and any money you win, you have to use it to purchase a Thirty-One item and then Levi gets 25% of the consultant's commission at the end.  Bowling is $10 per person (this includes shoes) for unlimited bowling from 6p-8p.  Levi gets 50% of this. The bowling offer is not open to anyone who walks in the door.  You will have to come to the room we are having Bingo in and get a ticket from us to make sure you receive the $10 deal and that Levi gets credit.   I'm finishing up the flyer for this event and hopefully will post it tomorrow.

We also still have bracelets available for $3.00 each with 100% going to Levi's fundraising. Contact me through this blog or Levi's Facebook group if you would like one.  I'm happy to mail them if needed!

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.