S-P-E-L-L-I-N-G

A few months ago, Emma started showing an interest in spelling. This prompted us to put note cards all over the house labeling items so she could see the words we had been saying to describe them. We knew that she could distinguish the letters from playing with her foam letters and being able to find the one we asked for correctly. Having the note cards up quickly led to her wanting to follow along by touching the letters on the cards as we spelled the words to her. While it made it much more time consuming walking around the house (because she wanted to stop at each note card and ask us to spell each word every time we passed them), it has had a huge impact on her.

In about a month, she has not only started to spell words herself, but she is spelling over 50 of them! I was thrilled when she started spelling some of the words that we spelled everyday (like light, door, and hug), but then she left me speechless by spelling the plural form of words when she wanted more than one (like kisses and hugs). We had spelled them for her, but she knew to spell the plural form when she wanted more than one of something.

As of today, here is her current list of the words she can spell (yes it is categorized and I am tracking the list on my phone- I can't help myself):

PEOPLE:
Emma
- Bug (I call her "Little Bug")
- Squirt (Daddy Ryan calls her "Squirt")
Mommy
Daddy Ryan
Jill
Mimi
Elmo

PLACES:
Home
House
- Chair
- Table
- Door
- Light
- Bed
- Bath
- Potty
- Mirror
- Big girl bed
School

ACTIONS:
Hug(s)
Cuddle(s)
Kiss(es)
Wiggle(s)

FOOD:
Milk
Food
Bite

COLORS:
Gray
White
Blue
Pink
Red

DAYS OF THE WEEK/MONTHS:
Sunday
Monday
Wednesday
Thursday
Friday
April
May

CLOTHES:
Pants
Shirt

OTHER:
Car
Fish
Piano
Love
Hi
Wind
You
Spell
Hair
Night night
On
Dog
Leg
Star(s)
Up

Most of the time, when we are spelling, we have to initiate the activity and give her something to spell currently. But she has already started initiating it herself and randomly spelling words without prompting! Seeing her not just learning but thriving gives us such a strong sense of pride and hope that we can't wait to see what tomorrow brings. She is certainly one of the most amazing little girls either of us has ever known and we are so lucky to be able to call her our daughter.

BIG Girl Time!

Emma has had several BIG changes this week as we make some significant transitions in her life to becoming more independent. At four years old, she is still used to being carried primarily from one place to another- bed to changing table, changing table to bath, etc. And at over thirty pounds, it is really starting to wear on those that carry her, like me.

When she came home from her weekend visitation with my ex, she came home to a new BIG girl room- we removed her crib and replaced it with a full size bed with rails and pillows galore because Mommy is a little bit of a nervous wreck when she can't be around to keep an eye on her. A new baby monitor has given me some piece of mind though. We opted for the low profile box spring and set up the bed frame to be on the lowest setting as well to keep it closer to the floor in the event that she was able to circumvent all the barriers that we made to keep her safe. Emma loves it and calls it her "big girl bed." It is even big enough that Mommy and Daddy Ryan can lay down with her and snuggle- which she asks for most nights when we put her down in it. I've noticed that she really doesn't move around much now either- another big change from her crib, where she was all over the place all night long. I'm sure the new mattress is much more comfortable and makes a big difference. Her other furniture still lines the hallway outsider her room, and probably will until a time where I'm sure we aren't moving back to it.

Then, on Tuesday, she got her custom wheelchair which is meant to address her scoliosis. While it will also give her a chance to be more mobile once she learns how to move herself around with her new wheels, the main purpose is to brace her back when she is in the sitting position to keep the curve in her back from getting worse. At my future brother-in-law's rehearsal dinner Friday night, she started rolling herself forward enough so that she could move several feet across a room over to me to get a hug. It won't be long before she is moving around the house and choosing where she goes. While that does make me nervous, and reminds me we need to finish baby proofing the cabinets in the house, I'm ecstatic about the idea that she can start making up her mind on what she wants to do and then do it herself! Of course, you wouldn't be able to tell how well she is doing getting around in it from this picture of when she was getting it fitted before we took it home. To her credit, this was during nap time and she was still very cooperative while she slept.

Just Another Day with Hydrocephalus

This morning, Emma and I got an early start to her day. We were both up, dressed, and ready to leave the house by 6:15 AM so that we could get to Children's in Dallas by 7:00 AM. Her schedule for the day was as follows:

• 7:30 AM - check in for MRI
• 8:00 AM - MRI (annual check of her ventricles and shunt to make sure everything looks good)
• 10:00 AM - EEG (test to see if she is still at an increased risk for seizures)
• 11:00 AM - appointment with her Pediatric Neurosurgeon to review her MRI

We didn't have to be there until 7:30 AM, but I always prefer to be early. Plus, Emma gets her morning dose of Keppra at 7:00 AM so I like not having to worry about doing that during our drive in.

After she had her medicine and was all set in her stroller, we headed to check in for her MRI. The plan was for her to get to eat her breakfast while we waited for her MRI at 8:00 AM. But since we were there early and they were ready for us, we did her MRI first and were done by 8:00 AM. She was wonderful as always and the staff was so impressed they gave her a gift basket! Then it was time for breakfast since we had a couple hours before her EEG. We still wanted to get there early just in case they could get her started sooner because the EEG was an hour long test this time and we had an appointment that was scheduled directly after that was in a different part of the hospital. Thankfully, they were able to get her started early so she was finished with just over 10 minutes before her next appointment. Again, the lady administering the test was so taken by how good Emma did that she gave her a little backpack full of toys! I think she felt bad for giving her such an impressive hair style...

When we saw her neurosurgeon, it was more good news- her ventricles looked great! They were slightly smaller, if anything, than they were from her last check. He was astounded by all of the development she has had in the last year since he saw her last and beyond thrilled at how much music had impacted her life. He said if she continues to do as well as she has been, we will start to go to check ups every other year after our next annual check when she is five years old. This was music to my ears!

Special Needs Trust

While Emma and I had a busy month, I felt that it was important to make a post about something that we were doing for Emma that was not a normal topic. On March 14th, we started the process of updating my will and creating a Special Needs Trust for Emma. For those of you that are unfamiliar with what this is, if you are a parent to a child who may not be able to be 100% self sufficient as an adult, you may want to look into this further. I first heard about it at a Special Needs Resource Fair put on my by local school district's Special Education PTSA last year. I took Emma with me and we found several great resources and learned so much about the services available to us that I hadn't heard of before. One of the people I met was a gentleman that worked at Life Planning for Families of Special Needs and we spoke for about 15 minutes. I realized that I needed to start planning for Emma's future so I could be sure that her needs, no matter what they may be, we taken care of. I have since been working with this group to get my financial planning in line and I highly recommend them to anyone else that needs help.


While I am no lawyer, I can say I have learned much more than I care to think about on a daily basis when it comes to estate planning at the age of 32 from the workshop I attended with some family members. I now have an updated will and a trust in place so that if I was hit by a bus today, Emma would be taken care of and still qualify for benefits she may need in the future. It is hard to think about someone other than me taking care of Emma to the extent that I do currently, but I know that the day will come that she will be more independent and I want her to have that for herself. I will always be her mother, but I also know that I must give her room to spread her wings and fly (even if I secretly run around beneath her with a net in the beginning because I'm still worried about her).


So, while this post is short and sweet, I just want to urge those that are families with children that have special needs to look into the waiver programs (MDCP, CLASS, and HCS). Keep in mind that these programs are specific to Texas, but if you live in another state, check and see if they have their own programs. Some of these lists in Texas have shorter waiting list times (3-5 years), but others are much longer (10-12 years), so it is imperative that you get your child on them as soon as possible. If they are lucky enough to not need any of the services when they grown up, then you can simply pass when their name comes to the top of the list. But if they do, you'll be grateful that you did it now.

She's FOUR and ready to SOAR!

Still can't believe it. She's FOUR! My little bug is was born four years ago. It's amazing to me to see how far she has come in those four years, but I struggle to believe that all of those doctors appointments and therapies all fit in such a short period of time. Sometimes I think back and wonder how we did it all, but I'd rather just enjoy where we are now.

This year, the theme was MINIONS. And there were lots of them - some in balloon form, others in plush. Then, there were the edible ones that took a bit more time to prepare.

Mister Ryan made the cupcakes. Yes, those are Twinkies with sprinkles for hair.

Mommy made the cake.

While she still wasn't interested in the cake or even the frosting, she seemed to enjoy the party. It was the first time we invited kids her age to come so I know that was special to her. It was nice for her to see her friends outside of school.

Once the party was over, it was nap time. During her nap, I opened all her presents and got them ready for her. Once she woke up, she was surrounded by her gifts and had so much fun! What a wonderful day for such a wonderful young lady!

Her HEART is so SMART!

We got the absolute best news on Wednesday at Emma's cardiology appointment. Her doctor told us that the hole in her heart was gone- her heart had healed itself and she would not need surgery to correct the defect! My lucky little bug was given the best early birthday present we could have hoped for and I'm still on cloud 9 trying to find my footing.

While this is exactly the news that we had been hoping we would get at some point, I wasn't expecting to hear it at this appointment. After the tears of joy filled my eyes, my heart melted as I gave her the biggest hug I could. As for Emma's AMAZING heart, I am again inspired by how strong she is as she continues to face adversity with a grace unmatched by anyone I have every known and a smile that lights up my world.

To celebrate, we had a heart cake and will be making her a heart pillow. Here is the cake, but the pillow is still under construction for now. I'll add it when it is finished.

Pay no attention to the huge Minion balloon in the corner...

Surgery #4

Emma had her fourth surgery on January 20th. Thankfully, it wasn't an emergency surgery so it wasn't stressful in that regard. She had been getting ear infections again (regularly) so we went back to her ENT to see what he thought. He recommended her getting her ear tubes put back in and removing her adenoids. He explained that by removing her adenoids, it lowered her chances of having to have ear tubes again and again because they can be a source of the bacteria causing the ear infections sometimes. Since we knew she would be having surgery, we opted to do both in hopes that she wouldn't need more surgeries again later.

This was the first time that I wasn't anxious about everything before surgery. She had had surgery with her ENT before, done well, and would be at the Children's Hospital again where she would be in the best hands. I got her bags packed and was ready to wake her and offer her food/milk just before the cut off times for each that night so she wouldn't be too hungry in the morning. I got her up early to have her last bit of juice before packing us in the car and heading to the hospital. Once she finished and had her epilepsy medication, we were off!

After arrival, we were checked into her room and the Child Life Specialist came in and brought Emma some toys for her to play with while she waited. Once of them, a pink and purple giraffe was hers to keep! It would light up and play music when you squeezed it's chest. She loved it and enjoyed taking Mommy's hand and having it turn the giraffe on.

The surgeries before Emma's took longer than anticipated so Emma's surgery that was supposed to start at ten didn't start until 11:15 AM. While we waited, the "happy juice" medicine kept Emma calm and relaxed. She was content waiting for her turn as long as Mommy kept providing a steady stream of hugs, cuddles, kisses, fish kisses, and anything else that she came up with.

It took about forty-five minutes before her ENT came out and told me that everything went well. Much to her dismay, Emma didn't have to just show she could drink the juice/water mix I had brought her from home like she usually had to do. With having her adenoids removed, they wanted her to eat too before she was discharged. I hadn't brought her any food so we had to find something she would eat. The only thing close was ice cream- not something she likes as she isn't really a fan of sweets. After fighting a couple bites down, we finally got released to go home.

Emma was a little tired and sore from the surgery for a couple days, but was quick to bounce back as always. While it was a day that added a tally to her number of surgeries, any day that is filled with that many hugs and cuddles and kisses is a good one in my book!