I breastfed Joel for 18 months and during that time I would always rock him to sleep while he nursed. Even though he no longer breastfeeds I have continued to rock him to sleep every night. It's just our thing. I rock him and pray and he holds my hand until he falls asleep, and then I put him in bed. I cherish that time at night because I know I won't be able to do it forever.

He has already grown so much that it has become much harder for me to lift him up over the side of the crib to lay him down.. So, we decided it was time to make the switch to a big boy bed. I was nervous about how he would do.. mostly because it took forever & a day for him to start sleeping through the night and I didn't want to ruin that. But thankfully we haven't had any issues. Every morning when he wakes up he runs straight down the hall to our room, swings open the door, and jumps into our bed with a huge smile on his face. It's one of those moments I wish I could record in my memory forever.

{I bought a pillow for him but he doesn't like it so it usually ends up on the ground at the foot of his bed.}

Two Years Old

Joel turned two years old on Sunday, February 03!!

We had a party to celebrate with friends on Saturday (Feb 02). We had so much fun!

For months I had been planning to have a train themed party, but Joel obviously had other ideas... We took him to the store to buy decorations and he picked out Sesame Street "Melmo" (that's how Joel says Elmo). And just like that all my cute train party ideas from Pinterest went down the drain! HAHA! Joel loved his "Melmo" party though, and that's all that matters!



 

 

Since Joel's actual birthday was on a Sunday this year we couldn't really do anything fun other than go to a park. That was fine with him though! He LOVES being outside and playing at parks. We decided to bundle up & walk to a park so we could break in his new wagon. Needless to say he had a blast!

 

. . .

I love to compare photos to see how much our sweet boy has grown and changed..

Genetic Testing Results

In December we received the results for our genetic testing. Joel's testing showed an alteration in the TSC1 gene.. Our testing of the TSC1 gene showed that neither of us have the same alteration found in Joel. So this means that his likely occurred as accident in the sperm or egg cell prior to conception. It also means that our chances of having another pregnancy affected with the same condition is very low. Since we already have one child with TSC the doctors said they can't tell us that our chances are zero.. But they did say our chances are a lot lower than if either of us would have had the same gene alteration. (It would be almost a 100% guarantee if either of us did have the alteration in our gene.) There is prenatal and preconception testing available to detect the alteration if we decide to have more children, but.. there is a chance of miscarriage with the testing.

*sigh*

We would love to be blessed with another baby one day but we're not sure we will have the prenatal testing. Obviously it could possibly give us peace of mind, but either way the results of the prenatal testing wouldn't change anything. We would never terminate the pregnancy if the results came back "abnormal." That's just not an option for us.


Oh, and I would like to clear up one more thing. Everyone we know has asked if Joel having TS is a side effect from the infertility treatment I took. The answer is no. This has nothing to do with that. That was actually one of the first questions we asked when we were told there were tumors on Joel's brain. We have asked other doctors since and they all gave us the same answer--no.

5 Year Anniversary

Our five year anniversary was on the 12th, and Jeremy surprised me by taking us ice skating!

 

Jeremy and Joel were ice skating pros! I on the other hand didn't stray too far from the rail. HA!

We had a blast!

 & I thought it was very creative of Jer to think of something that we could enjoy as a family.

:-)

 

 

 

 

 

Big Changes and New Adventures

After months of discussion we have decided that it will be in the best interest of our family for Jer to leave active duty. This has not been an easy decision for us. We have gone back and forth for months about whether he should stay in or get out. We want to do what is best for Joel, and we believe that [for right now] this is the best choice. He is still planning to stay in the military, but just as a reservist.

Right now our plan is to move to Ohio, near family. I will be honest.. I'm not thrilled about moving there.. but Ohio has the best TSC doctors for Joel and that's worth it all. Plus, we desperately need the support system that being near family will offer. Once (maybe twice) a month date nights? Um.. YES, PLEASE. Our marriage could definitely benefit from that!


This will be a new adventure for our little family. We are excited! and omg, stressed!! The stress is mostly about Jer finding a new job, though. Because you know.. that's REALLY REALLY REALLY important! Other than that we are excited! haha!

Our Year in Review - 2012

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..}