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. 

Smelling Roses

It amazes me, at times, how quickly the days slip away and a month goes by without feeling it could be possible. It compounds exponentially when my professional and personal life are both much busier than usual. This month has been one of those months, but it has been a good month as well. 

On October 3rd, Emma had an appointment with her eye doctor where we decided to proceed with surgery. She has been showing improvement from her patching treatment which is so encouraging, as it makes me feel that she has a good chance at gaining more ground with the surgery that is scheduled on November 6th.

Next was my birthday which I celebrated by taking the day off work and going to a pumpkin patch on a family farm with Emma. There was a petting zoo and hayride as well, and it made for a fantastic morning. While Emma wasn't big on petting the animals that day, she has finally started to touch Peter Pan during hippotherapy. She has continued to gain strength and improve her stamina with Peter Pan during this month. She had a week where sessions were cancelled due to weather, but still has become much more willing to touch the riding equipment and even began participating in the process of getting him ready for her therapy by helping brush him.

Pumpkin patch after the hay ride and petting zoo - about to pick our pumpkins

On the 10th, I went to Emma's first transition meeting for her to start school next February when she turns three. It is interesting to me that she will be going to the same elementary school I attended. In a way, the idea that there will be some familiarity, since I'm certain it will be hard for me emotionally to have her go, is reassuring.

That weekend, my niece turned three and we went to her birthday party. We also had a play date with a couple of other children with hydrocephalus from the support group. The next week was packed at work as we had our quarterly senior managers' meeting on Thursday followed by our annual charity shoot on Friday that I'm responsible for coordinating. It is one of my favorite parts of my job because it is in memory of my late Aunt Pam and I love seeing the veterans out shooting at the event where we raise funds for different military charities. Saturday was our company fish fry where everyone at the corporate office and their families gather at my grandparents farm. Then, on Sunday evening, Emma and I joined my parents at the Denton CASA's Evening of Elegance. 

Evening of Elegance - Emma was the most beautiful one there!

Needless to say, the month has flown by and I can't believe Halloween is just a few days away. This week, we have Emma's pre-op appointment, my grandfather's 80th birthday, and a cute bat costume to dress her up in. It is months like this one that I have to remember to take time to slow down, when I have the opportunity, to catch my breath so that the things that are normally on our schedule (therapies, doctor appointments, etc.) don't get overlooked or become overwhelming. I still have room for improvement when it comes to taking breaks and time out for myself, but I've kept up my weekly volleyball games and even managed to work in a manicure and pedicure this month to treat myself.

Today, we had a few errands to run (groceries and pharmacy) and laundry to do, but I made sure to keep the rest of our day more relaxed for my little munchkin and me. We watched some things on my DVR cause it was close to full and I was behind on F1, Top Gear, and The Voice. Emma really loves music and the cars so she doesn't seem to mind if they're on during play time or meal time.

On an episode of The Voice, I heard a line that inspired me: "It encourages me to dream with my eyes open." It reminded me how important it can be to take the time to smell the roses and recognize those in my life that encourage me to dream with my eyes open. I'm grateful I have people in my life that make me feel that way. Obviously, Emma is one of them, and the one that has had the most profound effect on me. But I wouldn't be who I am today without the support my family and friends. 

Next month, I plan to make sure they each hear from me how much I appreciate them and am grateful for their love and support. It is, after all, the month to be thankful.

Hippotherapy with Peter Pan

This morning, Emma made me so proud with how well she did at hippotherapy. She completed her second ride on Peter Pan where she didn't try to get off the majority of the time. She first began hippotherapy at the end of the Spring this year and went three times before SpiritHorse shut down for the summer. Therapy started back up last month and she has gone four times, including today, so far this fall.

Last week, her therapist decided to try to use weights on her ankles to keep her from focusing on trying to pull her legs out of the stirrups - it was a success! For the first time, Emma didn't try to pull her legs up the majority of the therapy session and she spoke for the first time ever while riding. By the end of that ride, she was singing songs and talking like her normal self.

Today we worked with a new therapist as the one we normally work with had to go home due to a cold. The new therapist decided to focus more on short distance unassisted rides (only a few steps) until Emma decided she was tired. At each point, we would stop and take breaks. Emma held on to the handle of her English saddle for the first time this session and was the most engaged she has been since we started hippotherapy! We ended the session after she completed her record setting walk of twenty-one steps before she decided to lay down on Peter Pan's back for a break. I was SO proud of her!!! She was talking during therapy again and did such a great job sitting up so well.

Left to Right: Mom, Emma Lee, and Miss Jill

I am excited because I am starting to see more of her normal happy personality when she is sitting on Peter Pan and less of her uncertainty. Her tolerance to new things is still so impressive to me and it motivates me to push her to do more when I see that combined with her positive attitude. For the first time, I felt she might start enjoying her weekly rides. Perhaps Emma will even see them less as therapy and more as play time with a really big furry friend.

Neonatal Intensive Care Unit (NICU) Nurses

I read a post today that made me think back to Emma's first month and all the emotions I went through every evening when I would have to go home and leave my baby in the care of amazing strangers that I trusted immediately without even knowing them. It was a letter a mother wrote to NICU Nurses. She wrote of the amazing care they gave, the knowledge they possessed, and the empathy they had for every baby they cared for. The bond that develops between the NICU Nurses and the families that they help is one that changes them. I know, because it changed me.

While I hated leaving Emma at the NICU each night to go home to take care of my dogs and sleep, it was a weight lifted off my shoulders knowing that the Nurses caring for her in my absence were the best people I could hope for. They had years of experience I didn't, knowledge about how to respond to her that I would learn, and a medical team to help if any emergency arose. She was in the safest place for her until she was strong enough to come home with me. I asked countless questions and did my best to be a sponge and soak up as much of the knowledge they shared that I could. Every day I was there with my daughter, I was learning from the best teachers how to care for my baby girl.

During one of the most emotional times in my entire life, when I found myself scared, excited, and unsure all at the same time, I was inspired by the strength, courage, and amazing hearts the Nurses had every day for every child they cared for. Like the mother that wrote the post, I too saw babies that didn't leave the NICU to go home with their families. I saw the pain the Nurses felt when there was one less bed in the pod then the last time I was there. Since Emma was in the first bed of the critical pod at the front of the NICU, I saw it more times than I care to remember. But, I also saw the joy they had when one of their babies was discharged and able to go home with their family. You could see on their faces how much that motivated them to keep going.

When the day came that Emma was to be discharged, I was nervous because she was going to lose her medical team that could handle any issue that arose without hesitation or uncertainty. I was going to have to pick up where they left off with only about a month of experience and without a team on standby in the next room. But during her last twenty-four hours in the NICU, I stayed with her the entire time and she was able to do something she had yet to achieve before then - she drank all of her thickened breast milk by bottle without having to be tube fed any of it. She showed me she was strong enough, with the support I gave her, to come home and start living her life with me. I believe it was her strength coupled with the support of her Nurses that made us such a great team. Without both, the doubt I had that we could duplicate such a feat every day moving forward would not have instantly melted away when I walked her into her home for the first time and told her she made it. 

So I want to say a special thank you to the NICU Nurses at Medical City Children's - you have touched my heart in a way unlike any other before you. You gave me hope to overcome my uncertainty. You gave me courage to overcome my fears. You gave me skills to overcome my insecurities. But most of all, you gave me the time to heal and the confidence to be a better mother than I thought I could be. Emma and I are both better off because of you.

September is Hydrocephalus Awareness Month!

Before I had Emma, September was just another month to me each year. It was the month before my birthday, but nothing really all that special. Now, as the leader for the Dallas Hydrocephalus Association (HA) Support Group, it is the month that I focus on creating awareness in my local community as well as raising funding for much needed research. HA is currently the largest non-profit group focused on raising awareness and funding for research to find a cure for hydrocephalus in the world. An example of what they have done with funding so far is come up with a new treatment protocol that reduced the infection rate in shunt related surgeries by thirty-five percent. 

This year, I am participating in the Second Annual Hydrocephalus Association WALK in Houston on September 21st as a virtual walker. I won't be able to make the trip down to Houston this year for the WALK, but I will be walking at the same time here in Dallas. I've set a goal of $957 for this year as that is how many days old Emma will be on the day of the WALK. Each year, we'll up our goal to how many days old she is that year. If you would like more information about this event, you can visit my event website here.

In an effort to inform others about hydrocephalus, here is some basic information:

• Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) within cavities of the brain called ventricles.
• 1 to 2 out of 1000 children are born with hydrocephalus. This number does not include those that develop it from brain bleeds, stroke, tumors, meningitis, or injuries; nor does it include those with Normal Pressure Hydrocephalus (NPH).
• There are over 1,000,000 Americans currently living with hydrocephalus.
• There are over 40,000 hydrocephalus related surgeries in the United States costing over $1 billion dollars annually.
• Fifty percent of shunts fail within the first two years requiring revision surgery.
• There is NO way to prevent or cure hydrocephalus.
• Over the last 50 years, there have been no significant improvements to the treatment options for hydrocephalus.
• Currently, there are only two treatments for hydrocephalus - placement of a shunt or Endoscopic Third Ventriculostomy (ETV). Both are brain surgery.

In addition, Emma and I have been featured in a local newspaper to help educate those around us about hydrocephalus. I would like to thank the people at the Cross Timbers Gazette for taking the time to get to know both of us and helping us share our story to help raise awareness in our community. Here is a link to the article, but if you are in the area and get their paper, be sure to check out the front page!

HA also has a new post about how you can help. Please take a look and do as many as you can (some are as simple as learning more about the condition and changing your Facebook cover photo for a month). How will you make a difference this month?

Amazing weekend

This past weekend was wonderful. Saturday morning was the second Dallas Hydrocephalus Association (HA) Support Group meeting and there was a wonderful group including a couple all the way from Houston - the Houston Support Group leader and a Houston WALK co-chair! It was great getting to meet several people who I had only been in contact with via email and Facebook previously. That evening, my neighborhood was having a little block party so Emma and I went out and met everyone. I'm loving my neighbors and am even happier that we moved.

Watching Mommy getting things ready for the Dallas HA Support Group Meeting

 

Add to that, this weekend was the Belgium Formula 1 Grand Prix, and Emma and I have been without cars going "VROOOOOM" for far too long. I was excited to wake up Sunday morning as I had a planned snuggle session with Emma to watch the race at 7AM. She woke up before the race around her normal time and started her morning routine of singing "Head, Shoulders, Knees, and Toes" as well as "Twinkle, Twinkle Little Star" along with a few others. I love listening to her in the mornings for a few minutes before I go in and get her just to hear all the wonderful things she is saying. But then she said something I hadn't heard her say before that lit me up like the Griswold's house on Christmas Vacation. When I heard the words, "I love you, mama" come out of the monitor, I couldn't contain myself. A couple seconds later, during my little happy dance in bed, she said it again! I jumped out of bed and went in to tell her how happy she made me.

After we ate breakfast, we sat down and proceeded to watch Formula 1 qualifying before the race. After qualifying, Emma sat on her potty for about ten minutes with no sounds other than the both of us singing. This is a rather recent new adventure as her first official day of "potty training" was Thursday, August 22nd. Emma has been saying "change" for getting her diaper changed (mostly after she had filled one up) for some time now. In an effort to help her understand a warning instead of a notification is preferred, we have started sitting on her potty twenty to thirty minutes after meal times in hopes that we'll catch her in the act so she can understand the goal. Since we only just started a few days ago, I wasn't expecting much. Once she was safely back in her diaper, we went back to the living room and started the race. Emma asked for juice around 9:50A, so I gave her about eight ounces. She guzzled that down quickly and happily asked for more. I gave her an additional five ounces which she almost finished.

Part way through the race, I realized she hadn't gone potty since I got her up that morning - and I knew with the milk, cereal, and juice in her system, it was only a matter of time. We took a break from the race and went back to her potty. To my surprise, she went pee-pee a little!!! I think the sound surprised her a little as did the fact that she didn't feel the warmth like she would from her diaper. It may have been only a little, but it was a BIG step for Emma and I was so proud! At the end of the ten minutes, we went back to watch the rest of the race. Shortly after we got all cozy, the warmth returned. When I asked her if she went pee-pee, she giggled. I changed her diaper only for her to go again before I could even lift her up off the table. I looked at her and asked her again if she went pee-pee. This time she whispered "pee-pee," and giggled again. Such a little stinker.

We finished the race and the rest of our weekend with a new warmth in my heart. She is growing up so much and making me so proud every day. I love my little munchkin!

Emma's Wing

Before I was even pregnant with Emma, I wanted to paint her room. Everyone thought I was jumping the gun a little given that I wanted to paint it blue. I kept hearing, "but how do you know you will have a boy?" To which I would respond, "I'm not, I'm having a girl. But blue will be her favorite color too!" Some found my response odd, but I was excited about having a baby and wanted the room blue no matter the gender. So I went to Home Depot and bought two different paints - same color, but one was a flat and the other a semi gloss finish. I did vertical stripes alternating between the two and absolutely loved the results. The project was a big pain in the ... but it was more than worth it. However, that was the only room in my last house that was a different color. When Emma began to show signs of sight around a year old, I noticed that she loved to feel the wall in her room when I had her laying on the changing table. She always loved to feel the wall and would always reach for it each night when I'd carry her into her bedroom to put her down. I realized she knew where she was based on the color. It made the hours of taping and painting (and colorful language) even more worth it.

Emma's First Room

When we moved, I thought about painting her room again like her last room. I kept thinking about how she could recognize her room from the color, but it wasn't as high of a priority as unpacking and getting everything out of my storage unit. Then I realized, during my ex's first week of summer visitation in July, that the perfect time to do it would be during his other week of summer visitation in August since the storage unit was now empty. This meant I needed to pick out paint and decide what I was going to do so I could get everything ready to paint the morning after she left. That way, it would have plenty of time to dry and air out before I put everything back and she came home. Or at least that was my plan...

Once I started looking at paint colors, I looked at the colors of her furniture, bedding, and bathroom accessories for ideas. I knew I was planning on painting her bedroom, bathroom, and playroom in a matching color scheme... but I wasn't a fan of how her bedding clashed with the colors I was leaning toward. So I started looking for bedding and found a set I adored!!! And to my surprise, it even included PINK! When I went to buy it, I found out that it was on clearance - EVERYWHERE. My excitement turned into disappointment quickly when I realized it was because the set was sold out and only a few accessories were still available. I checked everywhere, but no luck. I then started a search for something similar and found something that I still liked in the same color scheme, it just didn't have elephants on all of it like the first one (but there was still one elephant). Now her room would be the blue from her furniture and bathroom accessories, the white that was the trim color in the house, and the pink and grey from her new bedding. Now that the colors were chosen, it was time to decide what color would go where and get the supplies!

The colors:

Top --> Bottom: Summit Gray, Childlike, Stream, Pure White (Sherwin-Williams)

I decided to go a bit more extravagant with the painting simply because I like to make things special for Emma. This is why the project took longer than anticipated... even with plenty of help. So, without further ado, here are Emma's new playroom, bathroom, and bedroom (before/after):

Playroom:

Before

After

Bathroom:

Before 

After

Bedroom:

Before

After

Now that this project is over, I think it's time to finish unpacking. Maybe by the end of this month, I'll be done. Until then, I have three beautiful rooms for my baby girl that I'm proud of cause they make her smile.

Two and a Half Years

The last six months for Emma have come with many changes. She has increased her vocabulary by leaps and bounds (saying her ABCs, counting to twenty, and spelling her name to name a few) and is picking up new words daily. She has continued to show improvement in all of her therapy work and made all of her therapists so proud. We are currently in transition for a three of her four therapies (OT, VI, and Speech) and are still waiting for a new PT to be hired so she can start receiving those services again. I will miss the therapists that we've had, especially her OT that has been with us since Emma was two months old, but I'm excited to see what the future holds.

New Big Girl Bike
7/14/13

Yesterday, Emma had her first check up with her neurologist since she had her first seizure back on May 3rd. She weighed in just under twenty-five and a half pounds and measured thirty-seven and three quarters inches long! So while she really hasn't gained any weight, she has grown almost two inches in six months!!! I can't believe how tall she is getting.

During the appointment, her neurologist reviewed her case and asked questions about how Emma had been doing the last three months since she was diagnosed with epilepsy. I was pleased to report that she has been seizure free with no signs of any side effects from her daily preventative medication she had been put on. The recommendation by her doctor was to keep her on the medication for two years before we consider taking her off. During that time, she will have a natural tapering off of the medication due to growth provided we do not have to increase her dosage.

While preforming the physical part of the exam, he noticed that her back showed signs of secondary scoliosis. When sitting, the left side of her back stuck out further than the right side of her back no matter the position she was in or which way she turned. This was something I hadn't noticed, but once he pointed it out, I could see it. Children like Emma who have a low muscle tone are susceptible to developing scoliosis since their muscles do not provide enough support to their bone structure. He set her up to be evaluated and asked to see her back in three to four months. We checked out and made a follow up appointment with him in November.

Later this month, Emma has check-ups with her ophthalmologist and developmental pediatrician. We'll be looking at how the eye patching treatment has been going over the last five months. She recently figured out how to take them off on her own, but thankfully it has not become an issue so far. I am really looking forward to seeing the face of her developmental pediatrician when she sees how much progress Emma has made. This will be a great month for Emma!

Emma said "off" with such pride after removing her eye patch all by herself.