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.