Aiden Thomas

born 6:32 AM on Monday, August 11, 2014

10 lbs 0.4 oz, 21 3/4" 

I was scheduled to have a csection on Thursday, August 14 but someone decided to surprise us and arrive early. He is healthy and we are both doing well. Big Brother (Joel) is over the moon excited and seems to be adjusting well. Our hearts are full of joy and we feel blessed beyond measure! I will post more about Aiden's birth story later.. after I have a nap.. or two..
:-) 

38 Week Pregnancy Update

The end of this pregnancy has been rough on me. I have struggled with guilt during this last trimester because most of our days have been spent hanging out around the house and watching too many cartoons. If I'm up walking or standing for too long I get super achy fast and feel like my stomach muscles are being ripped apart because my belly is so heavy, though. I have to keep reminding myself that this won't last forever and soon I will be back in Super Mom mode.

I had an ultrasound yesterday afternoon to check baby's weight because he has been consistently measuring two weeks ahead at every appointment... and according to the ultrasound Aiden weighs 10lbs 5oz!! (This explains why I have been in so much pain!) Since I had a such difficult L&D with Joel (and he was only 8lbs 2oz!) and because of a few other concerns, my doctor has scheduled me for a c-section. I have never had surgery so I'm a little nervous about it. If I'm being totally honest though, I'm more nervous/worried about how Joel is going to handle everything. It makes me cry just thinking about it!

Please keep us in your prayers -- that everything will go smoothly next week with the csection and recovery, and that we (especially our sweet Joel) will all adjust quickly to having a newborn in the house.

38 weeks 3 days pregnant
sorry not the best photo
it was taken during big brother's bath time :-)

Progress!

I was beyond nervous about Joel having to take a summer break from preschool. In the past we have seen regression in his development during long breaks from therapies. Thankfully we have seen the opposite during this break! Our little guy has been making SO much progress! The most exciting thing.. he is talking in sentences now!! 

Oh, and yesterday we attended his LAST speech therapy session! It's a huge accomplishment for our sweet boy!! We are praying he will continue to progress.

Ending speech is beyond exciting and it also takes a little weight off my shoulders... We recently started feeding therapy once a week and it's almost an hour away. I was stressing about how I was going to juggle speech and feeding therapy around the preschool schedule, all while trying to adjust to having a newborn.


Progress with feeding therapy has been slow but we are praying it will help us figure out whether Joel's lack of eating is from his medicine or not. As of right now we are leaning towards switching his meds sooner rather than later (due to the lack of eating and because we are worried he might be having seizures at night while sleeping)... Please keep praying about this issue for us. We need wisdom to know what we should do.

31 Weeks Pregnancy Update

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!