Well, we stayed in the hospital for three days. The doctors didn't see anything new on Joel's EEG.. meaning, he is still having slight abnormal activity but they didn't see any huge spikes. So at this point they just want us to continue to monitor him at home.

I'm honestly not sure how to feel about it. On one hand yes I think it's great they didn't see anything.. but on the other hand, we were there for three days.. we put Joel through a very stressful situation.. and they didn't catch any of the staring episodes we had been seeing at home. It gave us a little peace of mind in knowing as of right now his seizures are still controlled--from what the doctors saw, anyway.

Even though the doctors told us Joel's seizures were controlled, a neurologist--a neurologist we had never seen before our hospital stay, by the way--decided he wanted to lower Joel's seizure medication to cause him to have a seizure so they could see if he would have a staring episode like we thought we had been seeing. It made absolutely no sense to me why someone would want to cause him to have a seizure if he wasn't having them already. We were on day 2 of our stay in the hospital when he came in to tell me this, and I just so happened to be alone because Jer couldn't take off from work. All the stress & worry built up inside of me and exploded into a huge meltdown of tears. The doctor wasn't compassionate about my concerns and fears. He simply looked at me and said "why are you crying?" I wanted to scream at him. He just told me he wanted to lower my two year old son's medication TO CAUSE HIS LITTLE BODY TO HAVE A SEIZURE even though the VEEG shows that Joel isn't having any seizure activity, and he wants to know why I'm crying. Really?? Our regular neurologist made it clear before we went into the hospital that he didn't want to touch Joel's medicine until we got the results back from the VEEG... And here this doctor who we just met is going to play with his medicine and put our little boy at risk of having a status seizure. No thank you. So, the jerk neurologist said ok and sent us home. I understand that in some cases the neuro's do lower medicines to cause a seizure... but most of those cases in TSC kids are when the neurologist is trying to pinpoint which tumor is causing the seizures so they can perform brain surgery to remove the tumor. We were not in that situation. We were simply there to see if Joel was having seizures while on his current medication. We were not there to cause them. I can understand if they did see something new that concerned them and they said ok we need to increase his medicine.. but that wasn't the case either.

*What would YOU have done in our situation? Do you agree that we made the right call?*

Ok, moving on...

On Halloween the hospital staff dressed up in fun costumes and went around to each room and gave out goodies. Joel's favorite was a hospital worker that was dressed as Jessie from Toy Story and had a labradoodle that was dressed as Buzz Lightyear. (I immediately told Jeremy we have to get our sweet boy a labradoodle. Look how cute they are together!) Everyone stopping by made our day brighter and I wish I could've hugged every single one of them. Seriously, it was the only time I saw Joel smile during the 3 days we were there.

Before we had to schedule the VEEG we had planned to take Joel trick-or-treating and let him dress as Buzz. Well, it obviously didn't happen the way we planned.. but we decided to still buy Joel the costume and let him dress up for his uncle's Halloween party. His whole face lit up when he put on that costume and saw himself in the mirror. It was priceless! Jeremy and I went as Mr. and Mrs. Potato Head.

Trunk Or Treating

Joel will be in the hospital for his EEG during Halloween so we took him to a trunk or treat event held by a local mom's group. He had so much fun and got way too much candy. Oh, and he dressed up as his favorite hero... Can you guess who it is? :-)

3-5 Day Video EEG

We had a 6 month check-up with the neurologist/TS specialist recently. We mentioned to him that we have noticed Joel staring off a few times over the past two months, but it has been random and didn't last long so we weren't 100% sure it was a seizure. The doctor wants to do a video EEG that will last 3-5 days in the hospital to rule out seizure activity since Joel does have a history of staring seizures. He said even if Joel doesn't actually have a seizure while in the hospital they will be able to see other things on the EEG that will let them know if something has changed since his last EEG (that he back in April or June).

Please say lots of prayers for us, and pray that the doctors will quickly see what they need so we don't have to keep our little guy in the hospital for too long.

Early Intervention Re-Evaluation

We were finally able to have Joel re-evaluated for early intervention!

We had to see the same lady that did his first evaluation though, and I honestly wasn't looking forward to seeing her again.. especially because every time we had talked she made it very clear that her mind was already made up about the situation. I prayed and prayed and prayed before our appointment.. hoping God would open her eyes so my baby could get the help he needs.

She came to our house for the appointment and she stayed for almost an hour. During that time [my prayers were answered because] she realized she definitely needed to put in a recommendation for Joel to be in the early intervention classroom! It was nice to finally have someone (other than family) see firsthand all the things I had been explaining.

Now we are facing a different hurdle though--the ugly wait list that likes to follow us every where we go. Ugh. I hate wait lists with a passion! I'm praying we will be able to get Joel in the classes soon. Thankfully the lady that did the evaluation has offered to come to the house once a week to help while we fight the wait list. I'm thinking she is only doing this because she realized she made a mistake, but whatever..we will take all the help we can get for now!

Step Forward to Cure TSC - Fall 2013

Today we participated in the 2013 Step Forward to Cure Tuberous Sclerosis Complex for Northern Ohio. {and yes, this is our second walk for 2013! In July we went to a walk in Southern Ohio.} Jeremy's two brothers and his aunt walked with us today and it honestly meant SO much to me. They woke up early on a Sunday and froze their butts off to support Joel! Joel thought it was awesome to have a few of his favorite people there, and I thought it was awesome that they didn't want us to walk alone.

on a fun hayride after the walk

Plumb Concert

I have been a Plumb fan for 13 years. The first time I heard candycoatedwaterdrops I was with my older brother, on our way home from youth group. I begged my mom to buy me Plumb's CD for days following hearing that song!

So, when I heard Plumb would be performing in our town at the beginning of October I was ecstatic!! I honestly didn't care about the opening acts, I just wanted the opportunity to meet Plumb and FINALLY see her perform.

I bought VIP tickets so I was able to attend the meet and greet before the show! It was way more laid-back than the meet and greet with Kirk Cameron. I was able to just walk up to the artists (after enjoying a free meal from Chick-fil-A, btw!) and get autographs and/or have photos taken with them.

Plumb!! She was awesome! She took the time to connect with everyone she met.
The conversation we had was very encouraging!

Josh Wilson

Mikeschair  

In case you have never heard of Josh Wilson, you need to go check out his music right now!
He was awesome live! He used a loop pedal for a few songs and he totally rocked it!
I love his song "Carry Me." If you [are like me and] struggle with panic attacks/anxiety, you definitely need to listen to that song.

Plumb

It was such a great concert! I was nervous that Jeremy wouldn't enjoy it because he is more of a heavy metal guy, but he actually liked it. It turned out to be a great date night! :-)

Pumpkin Patch

The day we decided to check out a local pumpkin patch turned out to be the hottest day in October. It also happened to be the one day that everyone + their grandma had the same idea we did and decided to go to the pumpkin patch with their kids. The whole place was crowded and didn't offer much for young kids to do. The very few things that were available for Joel's age had hour long wait lines. (I wish I was kidding.) I wish I could say we had a blast but that would be a lie.. and I'm all about keeping it real on here.. so honestly.. it was a drag. We did manage to knock enough people down so we could hop on a hayride though. The hayride was the only way to and from the actual pumpkin patch where you could pick a pumpkin. Seeing this little cutie's smile on the hayride and then when he saw all the pumpkins was totally worth the long hot wait we had to suffer through.