PAISLEY IS GONNA BE A BIG SISTER

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!

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.

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!

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!

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!!

May is Creeping Up

Alright, it's getting close to Paisley's first birthday. Eleven days to be exact, and I never thought it would bother me this bad. Of course right now we're overwhelmed with our illnesses. Brandon is still struggling with his diabetes and insulin pump, and now I'm having to go to the GI doctor this week as a last resort to figure out what's going on with me. I do, however, have to be thankful there is nothing new as far as Paisley is concerned. No seizures, no feeding problems, and she is so happy.

I think this birthday is bothering me so bad because day to day she just seems like an infant (mentally and developmentally a 3-4 month old) and I forget about her developmental delay so often and just treat her like a never-aging little baby. When I say she is "X months old" people usually don't think twice about it, but now when people will ask me how old she is I will say "One", and it'll be very obvious that she is not "normal". People just relate better to milestones and since she is not reaching any developmental milestones this is the big one for us. It makes me so much more aware that she is aging, this is going to get harder and harder as more time goes by.

Anyways, Paisley is smiling all day, rolling side to side frequently, making different sounds (still no "babbling"), and she is starting to reach out and grab things. I still wouldn't call it intentional, but I believe she is noticing there is actually a world around her and she keeps those little arms extended to grab anything she feels. She rips out my hair and scratches my face, but she is exploring and I am so happy about it.
We started doing stage 3 baby foods (mashing up the chunks now, after having to dig a noodle out of her throat) and we'll give her a bite of frozen yogurt, mashed biscuit, etc. Her speech pathologist has mentioned starting actual SPEECH therapy, since she is eating fine right now.

At her WIC check-up she is in the 23rd percentile for her weight (under-weight), 10th percentile for head circumference (tiny-head, but growing consistently since it's always tiny), and in the 98th percentile for her height... That's right, they're telling me that my baby is going to be close to six-foot tall. I'm 5'2, so she better be walking by the time she is towering over me. While the nurse at WIC was measuring and weighing her, she  asked, surprised, if Paisley wasn't sitting up yet. I just told her that she has a brain problem and she stated, "Oh, I was wondering if there was something wrong with her". Got to get used to remarks like that, I guess. I don't know, I might compare this to her stats we get from the pediatrician because it's hard to imagine someone in my family being that tall.

Also at WIC, they told me (even after I brought a doctor's note) they have to take away her baby foods at age one. Since she is still on a pureed diet we might have to invest in a food processor soon to make food for her. I guess I knew this was coming since she is getting so scrawny and needs more "grown-up" nutrients since she is a big girl now. She will probably be moved up to whole milk (age 1 to 2 needs the fats for brain development) with Carnation mix for weight gain, or maybe even toddler formula. I can't wait until we see her pediatrician on the 18th to figure out her new diet.

On Tuesday we go to see her neurologist which always makes me nervous. Last time was the only time we got good news and I hope it continues. I just personally think she is doing so well. Everyday.