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. 

The Grass is greener....

Levi had dental work done today. 

Unfortunately, once the dentist was able to take a good look (after Levi was put under) he realized that some of Levi's teeth were not worth fixing.  We knew Levi's teeth were getting bad.  He is regurgitating which has had a negative impact on his already sensitive teeth.  Levi ended up having a back adult molar extracted and 5 primary teeth extracted.  For a child who has severe oral aversions, the feeling that so many teeth are missing have bothered him since he woke up from the procedure.  I don't think he is in much pain.  I think the open spaces are really irritating him.  Hopefully in the next few days he will get use to it.  He seems to be willing to eat his food which is great.  I was really worried he would regress and refuse to eat.  There is a benefit to him only eating soft and slimy foods.

Because he had so much dental work done, I decided not to let him go outside and enjoy the wonderful weather.  I feel bad, but Levi likes to eat/chew grass and dirt.  The fact that he spit out the packing that was put in his sockets right when he woke up at the surgery clinic means the sockets are unprotected.  The worry of getting dirt or grass in them is something few parents would have to worry about.  This is part of life with Levi.

On a good note, the nurses all complimented Levi on how well he did.