Since I didn't blog as often as I wanted to in 2012, I thought a 'year in review' post would be a good time to share what we were up to! *Warning: this post contains a ton of pics!*

January -

• We traveled to the big city via ferry for countless doc appointments at the children's hospital. (Actually, we did this every 3 months during the year.)
• We celebrated four years of marriage!
• Jeremy hiked Mt. Walker for PT with his unit. This is a photo he took at the summit:
• Joel got to play in snow for the first time ever!
• Joel got his first hair cut!

February -

• We celebrated Joel turning ONE!
• We celebrated Valentine's Day
• Joel started walking!!

March -

• We played the lotto and won $2.00! Ha!
• Joel started early intervention classes
• We went to the Seattle Aquarium

 



April -

• Joel met the Easter Bunny for the first time at a school party
• Joel and I went to the Point Defiance Zoo & Aquarium with my friend and her daughter.

May -

• We went to a festival at Ft. Lewis

• We celebrated Jeremy's birthday!
• Joel rode a pony for the first time at farm day with his EI school
• We wore blue for TSC Global Awareness Day!

June -

• We played outside a lot, enjoying the summer sunshine!
• Joel and I went on our first trip to Mississippi sans Jeremy

July -

• We celebrated the 4th of July at our favorite park
• We went to the Olympic Game Farm
• We picked blueberries
• Jeremy climbed Mt. Adams. Here is a pic of him at the summit (12276 feet above sea level) wearing a Father's Day shirt that Joel made for him :)
• We participated in our first Step Forward to Cure TSC walkathon!

August -

• At the end of August we traveled to MA to visit with Jeremy's family. During that trip we:
• went swimming + played outside every single day

•  Toured a firehouse that Jeremy's cousin works at

•  Spent a day playing at a farm

September -

• We celebrated my birthday while spending a day in Boston
• We made a pit stop at Niagara Falls during a road trip to Ohio [with Jer's mom]. It was freezing, pouring down rain, and so windy that I thought I was going to fly over the rail.. but hey.. at least we can say we've seen it! haha

October -

• We took Joel to a pumpkin patch.
• We went trick or treating at the mall due to rain.

November -

• We celebrated Thanksgiving with friends.
• We took a trip to Forks and La Push, WA. La Push was AMAZING. The pictures definitely don't do it justice! The waves were huge!! And everything was just beautiful!

December -

• We played in snow!
• We celebrated Christmas, and had fun opening gifts!

A Long Overdue Update On Joel's Health

The last time I blogged about Joel's health was back in April.. so I guess it's time for an update..

We saw the cardiologist again in the summer. Joel hasn't any issues with his heart (praise God!), and the rhabdomyomas have actually DECREASED in size which is awesome news! We are praying the rhabdomyomas will go away completely as Joel grows. The cardiologist wants to see Joel again in a year.

We continue to see the neurologist every 3-6 months. We actually just saw her in November before Thanksgiving because Joel had an MRI of his brain. Everything looked great--meaning, none of the tumors have increased in size and none were blocking fluid. We had a clinic appointment with the neurologist following the MRI and we were finally able to see images. (We were never shown images after his first MRI.) He has tumors all over his brain but most are on the left side, in areas that the neurologists think causes him to have the seizures. We asked for an exact number of how many tumors are on his brain but the neurologist didn't have the notes from the radiologist yet.

{Before his MRI.. giving Oso hugs}

He was seizure free for a year which was/is awesome! Unfortunately after hitting the one year mark he started having seizures [that came in the form of staring spells] so the dose of his seizure medicine was increased. He hasn't had any seizures (that we've noticed) since, though! According to his doctors all we can do is keep up with his weight and increase his seizure medicine as needed.. and that makes this mama super nervous. :-\

We met with a geneticist a few months ago. He suggested genetic testing for all three of us. Joel had his testing first and the results came back showing a TSC1 mutation. The testing basically just confirms that Joel does have TS, but it will also help with our testing because now they know what to look for. Doctors have told us that people with the TSC1 mutation usually have a mild case of TS, which is good, but obviously everyone is different and they can't say for sure what Joel will experience as he gets older. So far Joel has been doing very well though, and we're all are very hopeful that it will continue this way.

{We are still waiting on the genetic testing results for Jeremy and I. We will hopefully find out soon. Whether we try to have another child in the future depends on those results..}

Pumpkin Patch & Halloween 2012

We took Joel to the same pumpkin patch we went to last year. He had a blast! I wish we could settle down in this area just so we can go to that farm every year.. It would be a fun family tradition! {It's fun to look back at last year's pictures and see how much he has changed! click here to see our 2011 pumpkin patch pics}

We bought two pumpkins this year--a small one for Joel to paint and a big one to carve. Joel had a blast painting his pumpkin! Somehow momma got stuck carving the big one though.. I think it had something to do with football but I'm not 100% sure.. hmmm.. haha! I didn't do anything fancy with the carving but I think it came out cute. + Joel likes it, and that's all that matters!

 

Halloween was cold and rainy so we went trick-or-treating at the mall. This was Joel's first year to go trick-or-treating, and I really wished we could have taken him around the neighborhood... but I think he had a good time, even though he had to stand in long lines for one piece of candy. His face would light up when he would show us all the goodies he had in his pumpkin. It was too cute! :-) Oh, and he totally chose the Iron Man costume. I wanted him to be a puppy but he picked Iron Man. Figures right? haha He was SO excited when we first put the costume on him.. He did circles in front of the mirror and kept smiling.. it was priceless!

 

Late Night Randomness

• I don't blog as much as I want to. But let's be real.. when I finally get a moment to myself all I want to do is sleep, read a book, or watch mindless TV. I'm sure moms everywhere can relate.
• My son is 20 months old, and I'm just starting to feel like my old self again. I really struggled for a while with a little bit of postpartum depression. (First time I've admitted that to anyone other than my husband or doctor.) Mix that in with the stress of my son being diagnosed with a rare genetic disease, and well.. I was a big mess. I felt overwhelmed ALL THE TIME. Like, can't breathe just want to cry and panic all the time. I've been taking it day by day, and it feels like it is getting easier/better. Exercise has been a BIG big big help, too.
• I want to learn something new and something totally not me. Something outdoorsy.. like fly fishing.. or archery. (How is that for random? Ha.)
• Books have become my new best friend lately. I just finished this book, and I loved it! I hate that I have to wait until next year for the next book in the series though!
• Okay.. it's time for me to admit something. I don't want to move away from Washington. Yep, I said it! We have been here for two years, and now.. I love it. I bet you never thought I would say that, huh? Me either! And Jer feels the same way about wanting to stay. Definitely not this city, but definitely in Washington.
• Do y'all watch Rev.enge or Rev.Oultion?? SO so SO good! Oh, and {not so} funny story about the first episode or Rev.Oultion--Sometimes (ok, alot of times)I tend to over think things and freak myself out.. Well.. I did that while watching the 1st few minutes.. It made me think about what would happen to us if the world really did black out, and I cried my eyes out! How would we get Joel's medicine?!? How would we survive??? I'm sure Jer thought I was a nut case but he never said it out loud he just hugged me and said everything would be okay. haha
• I've been trying new recipes lately thanks to Pinterest. Tonight I made ranch chicken, and it was sooo yummy!
• We had a really fun summer. It included a trip to Mississippi {sans Jer}, plus a trip to MA and Ohio! I have a post about it coming soon. You know.. in about three months. haha :-) 
• I'm going to hate myself in the morning for staying up this late. Ahhh. Must go to bed!
• Goodnight world!

Step Forward to Cure TSC - Seattle 2012

On July 28th (yes, I know I'm way behind! haha) TEAM JOEL participated in the Step Forward to Cure Tuberous Sclerosis - Seattle 2012 walkathon. It was our first walkathon and we really enjoyed it! We had a group of mil friends that came out to support us, and I'm not sure if they will ever truly know how much it meant to Jer & I.

Oh, and the best part -- Team Joel raised $1,235.00!! Yeah!!

When we got home that night Jer and I both agreed we had a good time but it was also very.. bittersweet, I guess you could say.. to meet other TS families. We hate that other people are having to deal with this horrible disease. One thing is for sure though.. this TS community will NEVER give up!

Today we wore blue in honor of Tuberous Sclerosis Complex Global Awarness Day!

Results & Moving Forward

At the beginning of the year we met with a cardiologist to discuss the results of Joel's echo that he had in December. The echo showed rhabdomyomas (non-cancerous tumors) but thankfully the cardiologist said they don't appear to be causing any issues or blocking any major parts.. He also said there is a good chance the rhabdomyomas could decrease in size as Joel gets older. Let's pray that happens!
We were sent home with a Holter monitor to record his heart activity for 24 hours (which is fun stuff with a toddler by the way) and thankfully the results came back all clear. We are suppose to see the cardiologist again in the summer for another echo. Please pray his little heart will continue to be okay!

In March we met an ophthalmologist and received more good news. Joel's vision is great and he appears to have NO spots on his eyes! The ophthalmologist  wants to see Joel yearly unless we start to notice anything unusual.

This is a little off subject but the morning of Joel's eye exam we went to Seattle early so we could check out the aquarium. He LOVED it. We tried to let him walk around as much as possible {oh yeah, he is full blown walking now!} but there wasn't much he could see from his level. I think our next adventure will be to the zoo when it warms up a little. Sounds fun huh! :)

Okay, back to the subject..  :)

I was able to have a long discussion with Joel's pediatrician, Dr. B, about all of  the tests results and what the next steps should be. Dr. B agreed that it was time for someone to give us a clear diagnosis (does he have TS or not?) so we can begin to move forward with whatever is needed to help Joel. He has been reviewing all the notes that SCH has been sending him, and he thinks it's safe to go ahead and say yes--Joel does have tuberous sclerosis. The moment Dr. B said it out loud my heart sank. It was the first time anyone had actually said it to me.


So now we're moving forward. We have enrolled Joel in a Early Intervention program since TS brings a risk of developmental delays. Right now he seems to be on track  (although, we are a tiny bit concerned about his speech but I will talk more about that later) so for now he is just in a playgroup that meets once a week. He has a blast when we go, and the best part is he is learning SO much from it. A bonus--last time we were at playgroup we learned there is another little boy in the class with TS. I didn't get a chance to speak to his mother but the teacher is suppose to formally introduce us next time we go. I'm really excited to meet someone local that can relate to what we're going through with this TS journey!

Look Who's Walking!

Last week Joel started taking a few unassisted steps and he hasn't stopped since! He is getting better every day, and it totally blows my mind! Seriously--didn't he JUST learn how to roll over?! ;) People aren't kidding when they say don't blink!

Here is a quick video that I got today.. {He walked all the way to me but my camera decided to stop recording half way through! Ugh!! Figures right!}

He definitely knows he is doing something big because normally his whole face lights up with excitement. It has to be the cutest thing ever! Makes me sad that Jer is missing it.. :( 

ONE YEAR OLD!

My precious baby boy is one year old today!!

I took him to an indoor playground today to celebrate and he had a blast! We stayed there for three hours and he played nonstop. The only thing missing was his daddy. :( {Mean 'ole Uncle Sam decided Daddy was needed elsewhere for a few weeks.}

We had Joel's birthday party last Saturday (the 28th) since Jer had to go out of town. The best part of the party was seeing Joel demolish his cupcake! It was too funny!!

This year has flown by way too fast! And honestly, I still can't believe God blessed us with this little miracle! Last night as I was rocking him to sleep I cried while thinking about how far we've come. For years I felt so hopeless and thought we would never be able to have a baby.. and yet, here we are.. blessed beyond measure with a gift sent straight from Heaven above! I will never be able to thank the Lord enough for my sweet boy!

HAPPY 1ST BIRTHDAY, JOEL CAMERON!!

MAMA & DADA LOVE YOU MORE THAN YOU COULD EVER IMAGINE!! 

First Haircut

Joel's hair was getting a little out of control. It was super long in the front (just down the middle), and it was starting to flip out by his ears. Daddy said it was time to get a haircut, so off we went to the barbershop..

He wasn't too sure about it at first. Oh but when the clippers turned on he totally freaked, and he was definitely sure he wanted the heck outta there! He was all smiles once we got to the car and he was able to have his first lollipop though. :) (and before I get rude comments--he only had the lollipop for a few seconds!)

I seriously felt terrible for making him freak out like that though! I wished I would've just cut it at home. The lady cut it shorter than I was ready for wanted anyway. Plus he looked way too grown up afterwards, which made me want to cry!! I want him to stay a baby forever! Waaahhh! haha

Snow!!

A few weeks ago we had a snow storm! Joel LOVED it. He would take off crawling as soon as we sat him down in it. He had a hard time moving in his little snow suit though. Speaking of his snow suit.. We couldn't stop laughing when we first put it on him because he couldn't move and it reminded us of the kid on A Chr!stmas St0ry! haha!

Jer was so sweet surprised me by making a snowman family for us. It was too cute!

All the snow brought back memories from my first snow storm here when I was prego. Jer and I had fun looking back at a few of the pictures we took during that time..

Thank You

I realize most of my posts lately have been about Joel's health.. and I'm sure people would rather read about something else.. but you know what, I can't/won't apologize for it. It's what we're going through. And it's usually the only thing on my mind when I have a moment to myself. There have been numerous times when I've tried to sit down and blog about something else.. but my mind wanders and I end up writing about this whole TS situation.

This whole thing has been alot to process. I can't really describe how overwhelmed it makes me feel.

Anyway, I just want to say thank you. Thank you to those of you that have been praying for us. Thank you to those of you that have contacted me to see how things have been going. Your prayers and support mean so much more than you know. Honestly.

{Joel's camera face}

Four Years

On this day

four years ago

 I married my best friend!

* Happy Anniversary, My Husband! *