2013

This has been a crazy and fun-filled year (with lots of pictures)! Emma has grown up so much and is no longer my little baby girl, but I couldn't be happier about it! Back in January, Emma was learning concepts like "up/down" and what noises animals made. She was starting to pair words with objects correctly which was so exciting. That month, she also had her first trip to the Perot Museum which she loved. I loved watching her face light up when she got excited looking around at all the new things.

The next month was her birthday and we were ready! The day of her birthday, we went out to dinner with my step-mom, just us girls. We had a wonderful time and were looking forward to her party that coming Saturday. She was a bit apprehensive about her outfit for the day, but she was still the cutest little munchkin I've ever seen! But Emma surprised us all when she got her bilateral AFOs and stood for the first time ever!!!

March was not as busy as February, but she did see her Pediatric Neurosurgeon again to check on her shunt and see how she has progressed. He gave her the "all clear" for another year which was wonderful news! She had a few other doctors appointments and had some pictures taken for Easter with Mommy that turned out really well.

In April, our lives began to change as I began the process of moving us to our new house. There was lots of packing to get the house ready to put on the market so that it looked like a house and not Emma's toy room. But despite a month full of therapies and doctor appointments, we got it done and put on the market. And much to our surprise, it sold in less than twenty-four hours of being listed. Good thing too, because we needed it to move quickly since our new home would be ready soon. I also started the Dallas Hydrocephalus Support Group and held the first meeting.

May was a hard month for a multitude of reasons, but it didn't slow us down much. We said goodbye to the house Emma came home to from the NICU and she had her first seizure while with my ex for visitation. But she also got to start riding Peter Pan again at SpiritHorse (they close for the winter months) and set several new records of how many steps he could take with her riding without assistance before she needed a break. For everything she went through that month and continued to smile, tell me she loved me, and sing to me every morning; I could not ask for anything more.

June was a busy month as well. Emma had her therapies and doctor appointments and we moved into our new house!!! July followed with much of the same, but Emma got to see her first fireworks show on Independence Day! There were lots of people and so much to look at, so it was a bit overwhelming at first. But once the show started and the crowd settled down, she happily looked up at the beautiful pyrotechnics. Emma also visited the SEA LIFE Grapevine Aquarium and enjoyed looking at the pretty fish and big sharks. I love seeing her face so filled with curiosity!

August was a month of doctor appointments and painting (so glad that project is over). And yes, she still had all her therapies too. By this time, her progress really impressed all of the doctors she saw and she was loaded up with stickers. Emma was referred to be checked for scoliosis when she went in for her epilepsy check as the neurologist noticed a slight curve developing in her spine. Scottish Rite stated it wasn't to a point where they felt she needed their assistance, but her doctors are actively monitoring it due to her fast vertical growth rate. We also held the second Dallas HA Support Group meeting and met many new people that were very nice. Emma was featured in her first article in a newsletter for my dentist. I was so proud of her!

September was Hydrocephalus Awareness month and a busy one at that. Emma started up her hippotherapy again at SpiritHorse riding Peter Pan (they stop during the hot summer months for the health and safety of both the children and horses). She was also featured in the local paper in an effort to raise awareness in our community. We participated in the Houston HA WALK for the first time and raised $1355 which exceeded the goal of $957 (the number of days old Emma was on the day of the walk). I was overwhelmed by the support and will be looking forward to it again next year!

October was a fun month as it was the beginning of our first stretch of holidays in our new house. For my birthday, we went to a pumpkin patch and enjoyed a hay ride after feeding the animals in the petting zoo. Emma went to the Retina Foundation and her Pediatric Ophthalmologist at the beginning of the month as well and we decided to move forward and schedule her strabismus surgery for November. We also attended the Evening of Elegance put on by Denton CASA where Emma joined me on the red carpet. We were treated like royalty on a night where we supported an amazing children's charity that is near and dear to my heart. But the best outfit of the month was still her little "bat-erina" costume she wore to go trick-or-treating for the first time.

November started off a little nerve wracking, but I knew that Emma would do well with her eye surgery and her doctor was amazing. The procedure went well and she recovered very quickly after a nice relaxing day of snuggle time once she was discharged. Her vision was noticeably better almost instantly. I knew she would have six weeks of healing before we would see the full effect of her surgery. However, she got to use her newly aligned eyes for an incredible experience only a couple weeks later when she attended her first Formula 1 event at the Circuit of the Americas in Austin. Much to my delight, she seemed to be just as giddy as I was to hear the cars start their engines!

 
December has been a wonderful way to end a great year. Emma had a fun night out at her very first Stars game - and they won! At her six week follow-up to her eye surgery, her doctor was only disappointed to say that he had no medical reason to see her for the next year. He admitted she had become one of his favorites and would not mind a visit if we were in the area between now and then. Emma got to see Santa again this year, but is still a bit unsure about his beard. This year she sang Jingle Bells to him while sitting on his lap so he promised to bring her something special when he came. And he did! Such a lucky little munchkin!!!

 
Happy Holidays from Emma Lee and Me and we hope 2014 is a great year for everyone!

Cars go VROOM!

Formula 1 is the sport that is on my calendar. Most people are football, baseball, basketball, or soccer people. I am a Formula 1 fan. I love the races, the tracks on the circuit and their history, and the drivers past and present. Growing up with a father who spent his weekends at the track in Ennis, I fell in love with the sounds and smells of speed.

With that love for speed, it was no surprise that I immediately took to racing once I was old enough to drive. My father took my sister and I to racing schools as a way to bond and develop our driving skills. Some of my favorite vacations growing up were spent at a race track. My favorite was a Skip Barber class at Laguna Seca - seeing the infamous Corkscrew turn in person and driving it in an open wheel car is currently one of my favorite experiences I've had behind the wheel because it was the closest I have come to anything like Formula 1.

When I had Emma, I wanted to share my love for the sport with her. When she was young, I would watch races with her and give her play by plays as the race was on. She was much more interested in listening to me talk than watching the cars on TV. But once she started talking and learned the word "car," I taught her that cars went VROOM just like cows going MOO. As she got older and became more curious, she started to pay more attention to the races when they were on the TV and it became a time for us to snuggle and talk.

Last year, for the inaugural race at Circuit of the Americas in Austin, I took Emma with me when my family went to see the race. She never went to the track as I didn't feel it would be something she would enjoy with the loud noises and fast cars moving that could be hard to keep up with. But after a year of incredible progress, I felt she was showing increased interest when the races were on television as well as a fair amount of improvement to her vision since her surgery.

So this year, I decided to let Emma try to see if she liked Formula 1 live. We had a set of head phones for her that we tried out prior to arriving to the track to make sure she would be comfortable wearing them for protecting her hearing. She was slightly confused by them but didn't try to take them off so now it was just a matter of how she would handle the noise. We got up Friday morning and made our way to the track for practice. We got to our seats and she sat in my lap looking around singing her songs and quizzing me on the different parts of my face like she tends to do right now.

Waiting for the cars to start.

As soon as we could hear the cars leaving the pits, the head phones went on and we waited for the cars to make their way around to turn twelve where we were seated. Once she heard the cars, she started to look around for what I can only assume was the TV as she knew that's where the cars normally were. It was hard to explain to her that we were there, but she figured it out as soon as she saw them after they had made a couple laps. But once she saw them, she started getting really excited and got the biggest smile. Lucky for me, she did it for a while so I have some great pictures of it.

Munchkin and Mommy both happy to see cars go VROOM!

While I will say that I really enjoyed the entire weekend and being able to attend the race again this year, my favorite moment of the entire trip was that smile. I loved seeing her face light up and her wiggle in excitement. She turned to me a few times and said something, but of course I could not hear her over the noise of the cars so I'm not sure exactly what she said. My guess was a high pitched squeal like she does when she is really excited. But it doesn't really matter to me that I couldn't hear her because a picture says a thousand words, and her message was clear.

eyePad

Today was a big day for my sweet little munchkin. We had an unusual morning that was far from her normal routine. I went in super early before she started her morning singing and offered her a bottle of juice. I'm sure she was thinking, "JUICE?!? Ok... Mommy must have gotten mixed up or needs to go to the grocery store cause this is supposed to be milk." All was forgiven because the juice was her favorite - diluted white grape juice. But then, at 5:30 the bottle was taken away (doctor's orders) even though there was still some left. Now that was less forgiveable, but when I told her it was a PJ day and promised lots of snuggle time, she smiled and said "I love you." At 6:00, we got into the car and went for a ride which was still unusual, but Emma always has fun in the car!

As I drove, we sang her songs the whole way there. It was her normal "singing time" so it was a mixture of "Itsy Bitsy Spider," "B-I-N-G-O," and "Head, Shoulders, Knees, and Toes." We arrived at our destination at 6:50, which was perfect. I wanted to get there before it was time for her epilepsy medication at 7:00 so I wouldn't have to stop somewhere along the way. Plus, that way we had plenty of time with no fear of being late. I got Emma changed and mostly dressed again when we arrived and we went inside to do her medicine before checking in. This is when Emma first started to get quiet. We had arrived at the surgery center for her eye surgery.

Emma's ophthalmologist diagnosed her with exotropia which is the form of strabismus where the eyes are deviated outward. She responded well enough to the patching treatment that she actually started using her right eye to examine items even when she wasn't wearing an eye patch. Her eyes didn't completely correct themselves from the patching treatment so it was time to consider surgery. When we discussed surgery to correct the alignment of her eyes, her doctor brought up how (for currently unknown reasons) performing the surgery where they detached both outer and inner muscles has been show to reduce or even completely clear up nystagmus (the eyes shaking back and forth). So we opted to have him perform the extra step in hopes that it would improve both conditions. 

Knowing all of this, I was still nervous when we sat down after checking in. I knew I needed to keep my nerves under control so Emma didn't sense them and get nervous or uncomfortable as well. So we sang and texted a few family members that we had arrived there safely. Then, we went back to her room and spoke to the team that would be taking care of her during her surgery. They were all so wonderful and put me at ease because she would be in the best hands, as I expected. They gave her an intranasel sedation before taking her back so she would be relaxed and not stressed when she was wheeled away from me. She was pretty cute asking for "Itsy Bitsy Spider" repeatedly once it kicked in because she spoke much more slowly. They took her back at 8:35 and I went to the waiting room for what felt like way more than an hour. 

SPI-DER!

Once she was out and in recovery, her doctor came and told me that she had done wonderfully and the surgery went well. I was relieved and couldn't wait to hold my little bug again. But I had to wait another thirty minutes - not something any parent likes to do, but as Emma's mother, I feel I've become a master. I'm so grateful I got my mother's patience... My father is a wonderful man, but patience is admittedly not his strong suit. But the wait was worth it as all the stress melted away once I heard her say "Mommy" when I saw her and said "Hi munchkin." I was so proud of her for how well she did. She had no visible bruising and her eyes had very minimal redness, which was better than I had prepared myself for, so I was relieved. I gave her the bottle of her favorite juice I brought and she drank most of it. Shortly after she showed the nurse that she could keep her clear liquids down, we were discharged and were back in the car to go home.

Just after waking up from surgery

Sleeping soundly after lunch

I can already see some great improvements and am looking forward to seeing how her vision develops over the next six weeks as her eyes heal from the surgery. Until then, we'll just enjoy the journey of seeing the progress unfold before my very eyes.