I had my third ultrasound with the high risk OB. Baby Aiden is still looking healthy and showing no signs of having Tuberous Sclerosis Complex. It was awesome to hear the OB say "baby boy's heart and brain look great, praise God!" He still recommends we continue to with our plan to have genetic testing for Aiden shortly after birth though. Unfortunately, as I have mentioned before, we have to face the reality that the ultrasound could miss something... BUT.. we are praying that Aiden will be TSC-free, and the genetic testing will only give us peace of mind early on.

At my last appointment with my regular OB I was measuring two weeks early. The ultrasound showed that Aiden weighs 04lbs 11oz (which is big for 30 weeks) and looks as though he will be tall just like his daddy and big brother. I am set up to have another ultrasound in seven weeks to check his weight again. Joel was 8lbs 2oz and I had a difficult time delivering him (I was able to do it with assistance but I ended up with tearing and needing stitches) {you can read about his birth story here} so my OB wants to monitor Aiden's weight to make sure he doesn't get too big.

I am thankful this pregnancy has been going so well. The hardest part has been finding time to rest. Resting is not easy when you have a 3 year old. When I try to sit or lay down I usually have to jump right back up because of Joel. By the end of the day I have to crawl into bed because I am so sore. Now that I'm getting closer to the end of pregnancy I'm starting to feel nervous.. not really about labor, but mostly about how I will manage taking care of a newborn and a 3 year old. If you have any tips on how to make it an easy adjustment or how to take care of two without losing all my hair.. please share!!

To Infinity & Beyond!

Joel is a huge Buzz Lightyear fan. Lately, for the past two or three weeks, he asks daily to wear his Buzz [Halloween] costume. If the costume is dirty and/or he isn't able to wear it, a huge meltdown will occur. When he takes the costume off he always says "Joel back!" It cracks me up every time he says it!

It's fun to watch as he is finally starting to use his imagination and trying to be more verbal while playing. When he catches us watching or if we join in, especially when the play involves being Buzz, his whole face lights up.

The other night while watching one of the T0y Story movies (for the millionth time), he started lifting up his foot and saying "Andy." It took me a minute to figure it out, but he was telling me that his foot had the name Andy written on it just like Buzz in the movie.

Anytime he sees a commercial for Di$ney he says "go there!!" and then he starts to talk about seeing Buzz. Hopefully we can take him one day so he can meet his favorite character.  :-)

How Having A Child With TSC Has Changed Me

Today is Tuberous Sclerosis Complex Global Awareness Day.

All week I have been trying to think of what I want people to know on this day. Obviously I want people to know what TSC is (if you don't know, click here).. but I also want people to know how having a child with TSC has changed me..

Having a child with TSC has made me a more compassionate person. Sadly, I use to be quick to judge others. Then my child was diagnosed with TSC and my eyes were opened to a whole new world. A world filled with strong individuals that may not look "sick" on the outside but inside are fighting off something that they cannot always control. These days when I see a child having a meltdown in public I no longer think "man, what a brat those parents are raising!" I now realize the child may have sensory issues like Joel, and being in stores or large crowds may be overwhelming for that child. He/she may not know how to focus or process everything. It can cause what looks like a tantrum or (usually in our case) it can cause the child to be very hyperactive.

Having a child with TSC has taught me to celebrate every day. We know tomorrow is not promised for us, but the reality of that never hit until my child was diagnosed with epilepsy and TSC. Every day I am reminded to celebrate every breath, every step, and every word spoken because in an instant TSC and/or his epilepsy could steal it away us.

Having a child with TSC has made me want to change the world. Before having Joel I never really paid attention to politics or medical challenges that families face. These days I know more than I want to. Meeting political leaders that would rather fund bike paths for our state than help fund medical research that could save many lives (true story)... and meeting families that are having to celebrate their child's birthday in a hospital, unsure of when they will be able to leave... those things break my heart but also encourages me to continue being an advocate for Joel and others. I may be a stay at home mom but I still have a voice and I refuse to be silent! I would have never said that before I had a child with TSC.

Genetic Testing Round 2

I met with a genetic counselor to discuss genetic testing for our second son, Aiden, that is due in August. {Click here to read about Joel's genetic testing results.} Going into the appointment I wasn't sure I would learn anything I didn't already know, and I was right.. but something good did come from it. The genetic counselor, Dr. S, suggested we do testing on Aiden just a few weeks after he is born. I agreed because it would be nice to either have peace of mind early on and know that Aiden does not have TSC or know early on that we need to see a specialist as soon as possible. The giant we have to face in the meantime is our insurance company. Dr. S will have to submit a letter to the insurance company (probably after Aiden is born) that states the medical need for the testing, which at this point is just family history unless Aiden shows signs at my 30 week ultrasound or after birth... The insurance company will then review the letter and either chose to approve or deny the testing. We really need them to approve it because if not it will be very expensive. Please continue to keep us in your prayers, and keep your fingers crossed that the insurance company will approve the testing after Aiden is born!

Easter 2014

On Saturday, the day before Easter, we took Joel to an egg hunt. We arrived just as the announcer was starting the count down for the kids to run. There were a ton of people so Jeremy had to pick Joel up and try to run past the crowd. The huge crowd seemed to be a overwhelming for Joel but he had the biggest smile on his face when he was showing me all the eggs he found after the hunt.

Saturday night we let Joel dye Easter eggs for the first time ever. I had a mom fail; I forgot to buy vinegar so the only colors that came out were the pink and blue. Thankfully Joel didn't mind too much.. He still thought it was fun!

Joel was a little spoiled this Easter. On top of the goodies he got from the Easter Bunny, he also received stuff in the mail from Grammie (my mom), Great Aunt Cheryl, + Pawpaw & Granny (my dad and stepmom). Grandma (Jer's mom) also had a basket for him and Crystal (Jer's cousin's girlfriend) gave him a bucket full of goodies. He was very excited about each gift, and now he wants to it be Easter every day. He wakes up every morning and asks me if it's Easter still. It's cute.

{Easter morning}

{Egg hunt at Grandma's house}

I'm thankful he has so many people that love him and gave him fun goodies.. but at the end of the day I want him to know the real reason we celebrated Easter. The resurrection of Jesus Christ. It's not easy to explain it to a 3 year old but I still try. Joel LOVES for us to read books to him so the Easter Bunny put a book called "Let's Celebrate Jesus on Easter" in his basket. I already talk about Jesus every day to him and I always pray out loud (throughout the day and before bedtime) so Joel can hear. Sometimes I pray out loud and don't realize he is actually listening until I'm done praying and I hear a sweet voice say "AMEN!"  :-)

Spring Weather

We had a wonderful weekend. We were finally able to go outside and not freeze our butts off! We had perfect weather with temps in the 70s. It was great! We took advantage of it by playing outside all day long and doing yardwork. Well, actually.. Jeremy did the yard work... me and Joel just played.  :-)

Our warm weather fun unfortunately did not last long though. We woke up this morning and it was snowing. Yes, seriously. Needless to say.. we are bummed!

Baby #2 Update

I had my second ultrasound with the high risk doctor today. Baby #2 looks very healthy (he weighs 1 pound already) and still has no signs of TSC that the doctor can see. The doctor did tell me, though, that we have to realize they can't tell for sure until after the baby is born. Sometimes the ultrasounds can miss something or it won't develop until later on. I have moments where I worry about it but for the most part I'm choosing joy. I'm thankful for this second miracle God has blessed us with! We are going to keep praying that he will continue to grow and stay healthy.

Oh! The ultrasound tech surprised me and gave me a clear look at our sweet boy's face. We think he looks like his big brother.  :-)

arm and hand