Trunk Or Treating

Tuesday, October 29, 2013

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

Monday, October 28, 2013

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

Saturday, October 26, 2013

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

Sunday, October 20, 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

Tuesday, October 15, 2013

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


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.


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

Saturday, October 12, 2013

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.

Shaking It For Luke

Friday, October 11, 2013

My childhood friend Jessica is currently living in Southern Ohio for college. (She graduates in December with her bachelor's degree! I'm so proud of her!) Last month she bought us tickets to a Luke Bryan concert to celebrate my 27th birthday. She drove up to stay the night and we went to the show. It was a much needed girls night out! Mr. Bryan put on an awesome show, and we had a blast!

before the show
I never drink. Seriously, never.
I had a really stressful week leading up to the concert though,
so I decided to have just one drink to relax.
Jessica sent my husband this pic of me and his reply was "holy crap she's going to get hammered!" HA!
I'd say that one drink worked like a charm.. haha!

The highlight of my night: I asked a beer cart worker where the closest restroom was and he points behind him to a long line of people waiting, and then he points to the right of us and proceeds to tell me that most people usually just go in the bushes.. my eyes got super wide and then he told me "..but you seem a little classier than that." My reply.. "yes, sir.. you are correct." And then I stood in line for what seemed like an eternity. I made lots of friends in the line though, so that was fun.. HA!

Fighting For Services

Monday, October 7, 2013

We have been fighting to get Joel speech therapy for over a year. In March I had a meeting with Joel's teachers [from his Birth-3 program] to discuss our Individualized Family Service Plan (IFSP). They finally agreed that yes, Joel does need speech therapy BUT they didn't want to start it since we were moving in April. I was extremely frustrated. The frustration only grew once we moved to Ohio and I was told that we would have to basically start all over again. Our IFSP and list of services he was receiving in Washington meant nothing to the state of Ohio. We had to wait months for evaluations and meetings. During the waiting we started to notice regression in Joel's development. I tried everything I could at home to work with him but I wasn't getting anywhere.

He was evaluated for the Help Me Grow program in Ohio, but a woman that spent 15 minutes with him determined he wasn't eligible for their class room program like he was attending in Washington. He would, however, be able to attend a county preschool for delays when he turns three. It made no sense to me.

Meanwhile, our new insurance company was telling me they wouldn't cover speech therapy services because his "speech delay wasn't the result from an injury or illness." Basically if he got sick one day and suddenly lost his speech or if he hit his head and lost his speech they would cover it. I tried to explain that yes, actually it is the result from an illness called tuberous sclerosis.. But in the end I was told I could write a letter to appeal it if I wasn't satisfied with their response.
At that point I was crying every night to my husband. Our son was regressing in his development (all the progress we had made before we moved from WA!!) and all the services needed to help, weren't willing to help us! I didn't know what else to do. We decided the best thing to do at this point is to find a private speech therapist. It's expensive, but it honestly has been worth every dollar spent. His speech is slowly improving which is a huge blessing!
Two months ago I looked into learning centers for him to attend a few half days a week [so I could go back to school and also] with the hopes that being around other children would continue to improve his speech and development. But oh my goodness.. the best one I found was $599 a month! SERIOUSLY. That price was for only three half days a week, and didn't include lunch! There's no way we could ever afford that. Not to mention.. if we did send him there, they are not equipped to focus on the sensory and developmental issues Joel currently has.

To say I have been overwhelmed and stressed out would be an understatement. I do my best to work with Joel at home.. I have tried taking him to story times.. I have even tried taking Joel to a parent/child art and music class.. but it's always too much for him and he just cries the whole time. At the parent/child art and music class everyone stared at me the whole time while my child cried, hit me, and threw himself all over the place. My heart broke for him.. especially because no one talked to us the entire time we were in the class. They just stared. I'm sure to them it looked as though my child was just being a brat since they don't know us and don't know what we've been going through. I had to fight back my own tears on the way to our car afterwards.

Jeremy and I both thought moving here to Ohio would be the best thing for Joel, but so far it hasn't been. If we had known all the problems we would have here, we would have stayed in WA until Joel was three years old. How were we suppose to know though? We thought everything would just transfer over, no problem.

At this point I don't know what else to do. One thing is for sure though, I refuse to give up until he gets the help he needs!

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