Telling Our Families (with video)

Monday, December 30, 2013

We are so beyond excited to be expecting another baby! The night before I got a positive test Jeremy and I actually decided that I should see my OB soon because we weren't sure if we were going to need Clomid to get pregnant again. I'm so thankful we didn't have to go that route this time! We feel blessed beyond measure!!

We knew we wanted to share the good news with our families right away. We needed prayers for a healthy pregnancy/baby and support just in case something went wrong so we figured the sooner we told everyone, the better. It just so happened that my first OB visit was on Christmas Eve so it worked out perfect for us to share with everyone on Christmas. 

I told my mom as soon as I got the positive test. She was coming to stay with us for a week during Christmas so I needed her to know in case I wasn't feeling well during her visit. She was thrilled to hear the good news and even more excited to visit with us! She never takes vacation so it was a special treat for her to fly to Ohio for the week. 

We shared the news with my dad and stepmom on Christmas morning. We always Facetime with them on Christmas morning so we decided to put the I'm going to be a big brother shirt on Joel and see if they noticed while he was on talking to them. They didn't notice right away.. and when my dad finally started to read the shirt out loud and it took him a minute to get it which was hilarious! They are hoping it will be a girl this time. :-) 

We had dinner with Jeremy's [mom's side of the] family on Christmas night and we thought of a fun way to share with them. Watch the video to see their reaction.. it's priceless!



We tried something similar on Christmas Eve with Jeremy's dad and stepmom. Jer forgot to record and took a picture instead though. The only one that got it when he said "Joel's going to be a big brother!" was his stepsister. {Of course I can't find the picture now that I'm looking for it..} 


I can't believe next December we will be a family of FOUR! 



Merry Christmas!

Wednesday, December 25, 2013


Baby Nelson #2 is due August 2014!!

Our Hospital Stay & Halloween

Friday, November 1, 2013

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

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

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

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!


 

Goals & Dreams

Saturday, August 24, 2013

"You are never too old to set another goal or dream a new dream..." -C.S. Lewis


I recently applied for admissions to a local university and I was accepted! I was so excited! After speaking with a counselor I decided to major in Public Relations. My ultimate goal is to one day work with a nonprofit organization (something to do with epilepsy, autism, or even TSC), and Public Relations seems like the perfect fit.

My next step was to find child care for Joel while I attended classes. I wanted to find a learning center for him to attend a few half days a week, instead of a day care where there is no curriculum followed. I toured 3 places in the area.. One was exactly what I was looking for and he seemed comfortable there, but wasn't worth the $599 a month they wanted us to pay. The other two centers were cheaper but not by much. When he turns 3 he will be attending a county preschool (for free), but that's not until around February. I'm hoping he will be able to transition into the preschool before the college Spring semester starts.. I'm planning to go for a 4 year program, so the sooner I can start the better. But I would hate to sign up for classes, pay tuition, and then Joel not handle the transition to daycare or preschool well and then I have to miss the classes.

I'm a little bummed that I have to put my goals and dreams on hold for now, but making sure my child is taken care of is my #1 priority. It feels good to finally know what I want to do as far as a career goes though! 

July Fun

Thursday, August 1, 2013

July was filled with lots of fun for us. We played outside (or "zoutzide" as Joel calls it) almost every day. We also went to a water park, the county fair, and a zoo.

Jeremy took a day off from work so we could go to the water park. We thought we would be avoiding huge crowds, but apparently everyone & their mama in Ohio had the same idea! It was packed full of people. We had a blast though! The kid area is huge and we were able to go on it with Joel. We also brought him into the wave pool (with a life jacket on of course!) and he LOVED it. We definitely want to go back soon.
Jeremy's mom went with us to the county fair. She took Jer and his brothers every year when they were growing up, and according to her it hasn't changed since she was a little girl. I think it will become a tradition for our little family too because Joel loved seeing the farm animals and the tractors. He also loved the pony ride.. and y'all, he was a pro at it! It made his Southern mama proud! :-)

The Cleveland Zoo involved lots of walking. Seriously, the place is SO spread out. Joel's expressions when he saw the animals were totally worth it though! I think his favorite things that day were the wolves, the dinosaurs, and riding a camel with mama.
 

* Proof that we are a normal family and we won't always get "perfect" pictures! *
 * Fun playing "zoutzide" *

Independence Day

Friday, July 5, 2013

Our town did fireworks on the 3rd. We were able to watch the fireworks from our backyard which was awesome! Joel LOVED it. Jeremy and I loved that we didn't have to leave our house and deal with traffic. haha 

On the 4th we went to a carnival. I personally don't like carnivals (I don't like the rides, I think the food is gross and the prices are ridiculous), and Joel didn't seem too impressed either. He only rode on a few things and he barely cracked a smile during it.

Later that day we had family over for dinner, and when the sun went down we had fun with sparklers. 

I don't have any pictures from my childhood 4th of July's but I have the best memories. My dad would always take me to a firework stand to pick out whatever I wanted. We lived next door to my mom's sister so we would usually combine our fireworks with whatever my cousins had. We would have a big firework show in our backyard. I would run around with my cousins, laughing and having a blast. Those were good times. I hope we make lots of good memories like that with Joel so he will look back when he is older and smile. 

Weekend Fun

Tuesday, July 2, 2013

Saturday we went to the aquarium and then to West Side Market. Joel had fun at the aquarium, but the market was my favorite part of the day. We had gyros for dinner from Steve's Gyros... It was seriously the BEST thing I have ever ate!



Step Forward To Cure TSC Ohio - Summer 2013

Monday, July 1, 2013

Team Joel participated in the 2013 Step Forward To Cure Tuberous Sclerosis Complex walkathon on June 22. We raised $720 this year! Thank you to everyone that donated!!


A special thank you goes out to Jeremy's family for traveling down to Dayton and walking in the heat with us. And thank you, thank you, thank you to Jessica (a childhood friend of mine that was able to walk with us this year) for creating our awesome team poster!

Whipps Ledges

Friday, June 28, 2013

We took Joel hiking at Whipps Ledges for the first time. He LOVED it. We didn't think we would be able to take him to the top but he climbed up there almost without our help. He would have stayed out there in the woods all day if we had let him!


The first time Jeremy brought me to Ohio to meet his family (in 2007) he took me to Whipps Ledges [in the rain] and almost let me fall to my death! Ok, I am exaggerating a bit, but I did slip and get hurt! I also got super sick after being outside in the cold rain and was miserable (and embarrassed) the entire trip. Nice way to meet the future in-laws right?


We were so young.. and skinny! 

Our Date With Kirk Cameron

Two of my dreams came true this month.. I got my husband to go to church with me AND I got to meet Kirk Cameron!


A local Christian radio station had been advertising a marriage event featuring Kirk Cameron and musical guest Warren Barfield, and of course I HAD to go! I didn't know how to bring it up to Jeremy though because he isn't much for the church scene. The only time we've been to church together was the day we were married. I really wanted to go to this event though, so I told him about it.. He said he would go, but I was worried he would back out on me. So I prayed about it.

The night before the event I went online to search for the address of the church. I somehow stumbled upon the church's FB page and saw that they had a few tickets that they were giving away.. All ya had to do was  send them a message explaining why your marriage needed this event and then they would contact you if you were chosen for the tickets. So I took a leap and sent them a message. Well guess what.. yep.. we received two free VIP tickets!


Being VIP meant we were able to go early for the meet and greet with Kirk. There were maybe 30 people in the VIP room and we were able to ask him questions if we wanted to. Afterwards everyone lined up for an autograph. I didn't bring anything for him to sign so Jeremy ran upstairs and bought me Kirk's book. As we waited in line Jer picked on me about me being nervous.. I told him I wasn't but OF COURSE I WAS! And I'm pretty sure I didn't say two words when it was finally our turn for an autograph! I just smiled. Can you imagine how awkward that must have made Kirk feel? haha I felt so lame afterwards!


As much as it made my day to meet Kirk Cameron, what I really wanted was to break the barrier that was keeping Jeremy & I from going to church together. Going to the marriage event was a blessing for us. We haven't been on a date in forever so it was nice to spend time together alone. And one of the things that stood out to me the most from the event was when Kirk told everyone "the heart of the problem, is a problem with the heart." How true is that?!

Great Lakes Science Center

We went to the Science Center in Cleveland with Jeremy's brother, Danny, a few weeks ago. It was so much fun! There was a bunch of hands on stuff to do and the kid play area was awesome for Joel. The day we went the Titanic artifact exhibit opened for the first time.. We decided to buy a ticket for it, and I personally think that was the best part of the whole day! Photography wasn't allowed in the exhibit though, which was a bummer. It was amazing to see some of the artifacts that still looked brand new after being under water for all these years. 

Behind the Science Center is an amazing view of Lake Erie. I wasn't expecting the lake to be as blue as it was.. I guess I'm just use to the dirty brown lakes in the South. haha


Trip To The Gulf Coast

Thursday, June 27, 2013

Joel and I took a road trip to Mississippi while we were waiting to close on our house. {Jer couldn't go because he started a new job and didn't have vacation days.} We drove to Nashville and stayed over night and then drove straight to the Coast the next day. I was nervous about driving alone but thankfully we didn't hit any major traffic and Joel behaved well.

When we got close to Mississippi I rolled down the windows and almost started to cry over the smell of the air. It smelled sweet like honeysuckles. I never realized that before.

. . .
A few highlights from our trip:

Playing at the beach with Grammie (my mom)

Seeing my BFF 

Going to the New Orleans Zoo with my mom, my brother + his family

Joel's first time on a boat; spending a day on Horn Island with Pawpaw (my dad) & Granny (my stepmom)


Seeing Joel play with his cousins and interact with his grandparents made my heart full. I can't put into words how hard it was to leave this time.. God obviously knew my heart was torn because during our visit I met a lovely lady named Jeanne that quoted part of a Bible verse [each time I saw her] that I needed to hear.
"..Where you go I will go, and where you stay I will stay. Your people will be my people and your God my God." Ruth 1:16
I have always been good about not crying when we leave the Coast after a visit, but this time I cried lots of tears. I always thought we would settle there.. raise our baby there.. but God has a different plan for our family at the moment. Deep down I know His plans are the best for us, but there are moments when I just don't understand. Thankfully I can drive home whenever I want now though, instead of having to save up tons of money for plane tickets.

Home Sweet Home

We became homeowners on June 03, 2013! We still can't believe it's true! We thought we would never be able to settle down and actually own a home. (One of the many reasons why my husband decided to leave the military after almost 9 years in.) God has blessed us big time, and we are VERY thankful!

We still have a few things to do/touch-up in the inside before I post pictures. There are 3 bedrooms, 2 1/2 baths, a basement, and a 2 car garage. Our favorite part of the house is the backyard deck:

Joel loves to play outside but we haven't let him in the backyard yet because we need to build a fence first. There is a pond in the back and our yard is covered in goose poop.. Those two things don't mix well with a toddler! Well actually, I'm sure he would have a blast.. but me. not so much. Haha


If you are stopping by for the first time and need to catch up, visit my previous blog - A Bee and His Honey

Team Joel 2013

Tuesday, June 18, 2013

Last year we participated in Seattle's Step Forward to Cure TSC walkathon. It was our first time walking as Team Joel. Thanks to family and friends we were able to raise $1,235! We never imagined we would be able to raise that much in donations. We were blown away by the support!

This year we will be participating in Ohio's Step Forward walkathon. We have been trying to fundraise for a few months in between moving across the country. It has been stressful at times, but it's so worth it to help this great cause. 

Last year I got word that people were saying they would not donate because it wouldn't help Joel directly. I don't know where they got that information, but it's false. Every dollar raised for TSC research helps Joel directly! The research is not only to hopefully find a cure for tuberous sclerosis complex but to also find better treatments for those suffering with this horrible disease. The scary reality of TSC is that it can change at any moment. I cannot stress how important this research is!! If it wasn't important I wouldn't be begging everyone and their mama to support us. I would have stayed home back in February instead of leaving my baby for the first time ever just so I could speak to legislative health aides on Capitol Hill.

When I went on my DC trip I learned so much about TSC research. For instances, I learned that the TSC research is also helping to unlock doors for autism, epilepsy, cancer, and even traumatic brain injuries. Amazing right? 


One thing is for sure, I will not stop begging people to donate (even a $1.00!!) to support this research until a cure is found. I'm praying the cure will be found within our lifetime! If we don't advocate, who will?


You (yes, you reading this!) can help us raise awareness about tuberous sclerosis by sharing our story with everyone you know! You can also help by sharing our team page so people can sponsor Team Joel. Every bit of support is greatly appreciated! :-)





 

TS Specialist, Medicine Changes, & Seizures

Saturday, June 1, 2013

Joel had an EEG the first week we were in Ohio. He cried while the electrodes were placed on his head (as he usually does),.. but thankfully Jeremy and I were both able to be in the room (SCH would only let one of us be with him during EEGs) and I was able to lay beside him. He calmed down once the techs were done touching his head. At the end he was excited and kept saying "done.. mama, dada.. done.." and would also do the sign for "all done."


{Seeing him like this breaks my heart. I thought it would get easier as he gets older, but it hasn't. I worry about how I will explain all this to him when he is older and starts to question why he needs these tests. I pray God will give me wisdom on how to explain it when that time comes.}


We met with a neurologist after the EEG. The neurologist is a tuberous sclerosis specialist. It was amazing to talk to someone that actually understands TS and was able to answer all of our questions. The neurologist in Seattle was nice, but it was obvious she didn't know much about TS.. We would leave appointments feeling more confused than we did when we went in! It was frustrating. Anyway, the TS specialist said he couldn't believe Joel has only been on one seizure medicine because most TS children have to try multiple meds before finding one that will work. He also said he couldn't believe the notes and the test results from Seattle because Joel's EEG from that day looked great. He said the first EEG Joel had (without meds at 7 months old) showed abnormal activity all over his brain.. and the current EEG showed a tiny bit of abnormal in the front left (where most of his tubers are) but it was so small that you would miss it if you weren't looking hard enough. All I could think was GOD IS SO GOOD!

One thing we have been concerned about for a while though is Joel's appetite. His seizure medicine has a long list of side effects and appetite loss is one of them. Seattle doctors usually brushed it off, telling us it was probably just a toddler phase and not to worry because he was still gaining weight. But I knew in my heart that wasn't true. So before sending us home the doctor sent us to the lab for Joel to get blood drawn to check his medicine levels. (Seattle doctors never checked his levels!) His levels were a high normal so the doctor decided to lower the meds to 2 pills {we open the pills and sprinkle the powder into food~in case you are wondering how we give a two y/o pills} in the morning and 3 at night. We noticed right away he was eating more! But.. we also noticed the seizures again. He would randomly stare off and no matter how loud we said his name or clapped our hands in his face he wouldn't respond. Within a week they were coming more often so I called the neurologist and he said to increase the meds back to 3 and 3. The seizures went away and so did his appetite once again. =\ I'm worried his medicine will need to be changed to help with his appetite. Why does that make me worry you ask.. Well because what if the next medicine doesn't work as fast or as well as the current. I don't like to think about it. At all.

In the end, I still believe God is good--and I know He will give us and doctors wisdom on how to keep our sweet boy healthy!

For TSC Awareness Month

Wednesday, May 8, 2013

Today I'm guest blogging at Mixed Up Mommy for TSC awareness. Click here to read my post!


What I'm Learning: Forgiveness

I struggled for a long time with forgiveness. I'm not talking just a few days or even months.. it's been a struggle for years. I know I haven't shared much about my past on here (mostly because I don't know where to start) but there were certain people from my past that I just could not and would not ever forgive. I mean, hello.. why should I when they were the ones that hurt me? Right??

Wrong!

The moment it all changed for me was when I read a verse that said we are to forgive just like the Lord forgave us. That verse hit me like a ton of bricks!

If you only knew all the things I have done wrong and all the times I have turned my back on the Lord.. and yet, He forgives me! He is ALWAYS there, ready to love me even though I have broken His heart a million times.


I started praying that God would bless the people I had bitterness in my heart towards. It wasn't easy at first. At all. But over time I have felt my heavy, bitter heart becoming lighter and less hurt. When something reminded me of them I would think of happy memories instead of the ones that caused anger and resentment in my heart. Instead of cursing those people, I have found myself praying blessings for them and their loved ones.

I have also been praying for anyone that I may have bitterness in their heart towards me.. I hope they can forgive me for hurting them. Sometimes it's easy to forget we can hurt others.

Ohio!

Sunday, April 21, 2013

We arrived in Ohio on the 13th. Our trip went better than we expected (meaning, Joel did not cry for hours during our long car rides). We weren't able to see a few things we had planned (the tulip festival and the Mall of America) which was a bummer, but we survived and made it here safely--and that's all that matters!

We have been going nonstop since we arrived.. Between seeing family, house hunting, and doctor appointments (will post about that soon), we feel like we haven't had a chance to relax. We are ready to be in our own house and have our normal routine back!

Speaking of houses... We put an offer on a house a few days ago but the sellers decided to accept an offer from someone else. We weren't too upset about it.. It obviously wasn't meant to be ours. + We were able to find a house that is exactly like the first one (it's just in a different neighborhood and it doesn't have a finished basement) and we put an offer on it yesterday. We are still waiting to hear if the sellers will accept our offer! We should hear something tomorrow. *crosses fingers*


Jeremy starts his new job tomorrow morning! He was able to meet everyone last week, and he thinks he will like working there. I'm really excited for him! I know he has been wanting to do this for a very long time.

Journey To Ohio (in pictures)

Monday, April 15, 2013

Washington


We stopped at the Montana-Idaho border to play in snow!
Half way thru the trip we started to go a little crazy!! :)

We had to stay in North Dakota for two days due to a snow storm. We didn't mind too much though.. We needed a break from the road! We had fun playing in the indoor pool.

Once the snow cleared we went out to see what the town offered. We stopped at an outdoor/sporting store that had a ferris wheel inside the store. Joel thought it was cool.


Chicago! My favorite part of the whole trip! We stopped for lunch (Chicago pizza, of course!) and we walked around Millennium Park. We also stopped by the Disney Store, which I'm pretty sure was Joel's favorite part. I definitely want to go back for a weekend to see more of the city.





 
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