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.