Tuesday, January 15, 2013

EEG-time again.

This was the first time we had to do an awful prep for an EEG, but my girl did so good! Daddy put Paisley to sleep at midnight while mommy rested to wake her up at 4 AM. No eating, no napping until our 8:30 appointment. Paisley was not very happy and it was a bad morning with a toddler to say the least. We had a meltdown while they were hooking her up, but when we got to leave her alone finally, she went right to sleep.

After the test we went straight to the neurologist's office and he was very happy with her EEG results (which says a lot) and thinks Paisley is doing really well. He says there's some suspicious activity going on near the front of the brain, but nothing he's worried about, and at the back of her brain she almost has some "normal" brain activity! That has never happened before. We are not going to taper down on her medicine like we discussed last time however, but that's fine with me. Don't fix what's not broken, right? Maybe if she continues to go seizure-free for a little longer.

Overall, I am so proud of my girl for being so good and cooperating with the test. She really is so sweet and wonderful. I hope her brain keeps up the good work. We all got to rest afterwards, too. :)

Paisley's present from the neurology lab. They're starting to know her to well. This was her fourth EEG.
I'll probably post the EEG report on here later on for other parents, as always.

Monday, November 19, 2012


I am fourteen weeks pregnant with a baby girl that does NOT have Lissencephaly!

That's right, and she wasn't a big surprise either. Well the fact that she is a girl kind of is, because we all were so sure that she was going to be a little boy. Of course Paisley fills our hearts with joy and we're very happy with her and how far she's come from our initial expectations since her diagnosis, and we want someone else to love and cherish her with us. There also is that big part of us that wanted to know what it's like to watch a child grow and learn and be independent so bad. I think we deserve it and I think Paisley will be motivated.

You might be wondering how I have all this good news already. This is kind of a don't-judge-me-until-you-walked-in-my-shoes thing. After our meeting with Paisley's genetic doctor we were told that we were safe to have healthy children in the future and had maybe a 1% chance of the ILS gene occurring again if Brandon or I had tiny flipped data in our 17th chromosome. Not likely. Awesome!

The moment I became pregnant, that 1% is HUGE. 1 in 100 didn't sound good enough for me. This couldn't happen again! What were the odds of having a baby with Lissencephaly in the first place, right? I was worrying myself sick and I knew I wouldn't be able to have a happy and healthy pregnancy unless I just had that peace of mind. I knew the baby didn't have Liss, but I just had to have the proof.

I made the hard decision of having the Chorionic Villus Sampling (CVS) test done. Dr. Roussis at the Fort Sanders Perinatal Center here in Knoxville did it two weeks ago and I would not have had it done if it wasn't someone as experienced as him doing it, with the risks involved. He is a high risk OB doctor who I also saw with Paisley, and even though it sucks being a high risk pregnancy, I love him and that whole office! His hands are the only ones I would put mine and my babies' lives in.

The test was uncomfortable, but it was all the waiting afterwards for signs of miscarriage and the test results that was the painful part about it, especially since my insurance didn't get me rapid results. I really just didn't feel "right" for a week after the test. It was pretty scary, but now that I feel great and have wonderful results, I can finally relax and enjoy this pregnancy. It was well worth it. I definitely made the right decision for our family. Plus I got to know the gender really early! If any other mothers out there are worrying about this test and want to talk about it I can tell you everything I experienced with it so feel free to email me because it was really hard to find good stories with results and everything on the internet while I was going through it.

We love our baby girl with Lissencephaly and we love our baby girl without it. It's like being new parents all over again, kind of. Paisley is going to be a great big sister sometime around May 19, 2013.

Update... On the Past Six Months.

Paisley is now 18 months old, I turned 22 a few days ago, and Brandon turned 25 in August. Paisley is very vocal, blowing bubbles and spitting everywhere too. She loves to say "Boom", other than that it's still a lot of Oohs and Aahs with an occasional consonant thrown in. Paisley is a biter and she thinks it's funny. I finally had to stop breastfeeding her at 12 months because my milk supply was getting pretty low and with nothing else to do she would bite. There's really no good way to discipline her or tell her "no" yet so I just cut her off cold turkey. She's still not reaching, but has developed an obsessive need to scratch EVERYTHING. It was explained to us as "surface scratching" and it's just a sensory thing. It can sometimes interfere with basically anything we're doing though because she will get so into it. Still not sitting up independently. She can prop sit for about thirty seconds on a really good go.

She still goes to therapy all week. PT twice a week for 45 minutes, OT twice a week for 30 minutes (they took one session out a week for about a month because she wouldn't use her hands, I was mad), and Speech twice a week for 30 minutes (one session is still feeding, and one is actual speech!). We still see our amazing early interventionist, Andrea, once a week and I got Paisley into a research program called Early Learning Games (IF YOU HAVE A CHILD WITH DELAYED DEVELOPMENT AT ABOUT A 5 - 8 MONTH OLD LEVEL AND ARE IN THE NEARBY AREA PLEASE LET ME KNOW). Early Learning Games is a study that the Puckett Institute in North Carolina is doing where an early interventionist comes to the house once a week and teaches me how to play games with Paisley to stimulate development, learning things like cause and effect, etc. It is so much fun, it's really helped Paisley so far, plus the data will help other children like Paisley. If you're interested in knowing more or what kind of games we play, please let me know. I email back or if I get a lot of replies I might make a post explaining it thoroughly. Our EI for the games comes from 2 hours away each week so it can probably branch out to you guys a bit.

Nothing new with the eye doctor. Our rehab doctor was really excited last time we went to see her. She thinks Paisley's development since seizure control is very encouraging and wants Paisley sitting up independently by the next visit... in March. We're still a long way off so I feel like we have a deadline and I want to get to it!! We go for an EEG on January 15th and depending on that we might take one of her three daily doses of Topamax out. I would love to do that and have her more active, but I also see little triggers and worry about seeing seizures again. For an example, there is a toy at therapy that is spun and lands on a letter of the alphabet with an animal that starts with whatever letter it lands on and it makes the animals sound... So imagine a yak or turtle sound if you can. It's a very low frequency, slow sound. Paisley literally flinches, goes crazy with her eyes, and just looks really disturbed. It almost looks like an infantile spasm which just really freaks me out. I would really like to get her doing some sound conditioning if her rehab doctor will look into it for me.

I really think that's about it for her development/doctors/therapy right now. I wish I had more time to post so I could be a lot more thorough for our family members and for other Liss families. I will try to post more pictures on Paisley's Facebook page and try to post more on here as things happen. I really will! So don't stop reading. Maybe some videos too!

Saturday, July 14, 2012

Prepare For Update Spam

So sorry I have't posted in months! A lot has been going on with our little family, but I am about to fill you guys in with every little detail and upload a lot of pictures since my absence, starting with this post I found: http://www.huffingtonpost.com/maria-lin/special-needs-parenting_b_1314348.html

Be patient for more.

Saturday, May 5, 2012

Cinco De Mayo

Today we went to Babies R Us with Charlie and she bought Paisley early Birthday presents! We got a Baby Bullet since Paisley will be on pureed foods for a long time, possibly forever. Now you know me, I DON 'T COOK, but Paisley is underweight and really needs the nutrients most babies her age get from regular "adult food". I'll have to make up a review once we start using it.
We also got a tray for Paisley's Bumbo seat. Even though her chair will have a tray when it gets here, I want to try things with the Bumbo, especially since she still has to work hard to sit up in the Bumbo, unlike the easy-as-pie chair. She actually figured out how to hold on to the edges of the tray to keep herself more steady! Here's some cute pictures before she turned into angry Hulk and ripped the tray off! Not even kidding!

Tuesday, May 1, 2012

May Is Here!

The neurologist visit went great today. The doctor told us she looks and acts like she is doing very well. We're staying on the same dose of Topirimate for four more months and then possibly tapering down. That makes me nervous, but she wouldn't be as drowsy during therapy, etc.
I hurt my back carrying Paisley around all weekend since we were pretty busy. I can't wait to get her Squiggle chair on June 4th!

Sunday, April 29, 2012

Birthday Pictures

One last photo dump for the day: 
First Birthday Pictures by Sherri Hedberg, mama of our favorite family.
Okay, so she was really tired, but we had a blast!!