Week in Review

It's actually been a really good week for Brianna. We've been adjusting her diet to find the right ration. When we started she was at an 87%, but her team wanted her below 80%. The reason is because when the fat content is above 80% it sends her into the danger zone where she needs more frequent monitoring. And we have to be really careful about what to feed her to make sure the levels don't adjust. So she would essentially have to be tube fed with little to no oral feeds because the diet preparation is so complicated. So we wanted to keep her at a lower ratio. When we had initialized the diet, the effect was obvious. She became more interactive, her energy levels increased, and her SPD (sensory processing disorder) became much less obvious. However, when we lowered the ratio under 80%, her entire demeanor changed. Her seizures returned, her energy plummeted, and she was expressing more sensory issues. So we decided to return to the higher ratio. It wasn't as drastic or obvious as the first time. She has still had a couple seizures, but her energy levels have definitely been higher. And she's so much more engaged and vocal.



On Wednesday she had physical therapy and did beautifully. Her therapist noted that her balance is really good and she's on the verge of standing and learning to walk. Right now our major roadblock is her confidence. She actually stands without support if she's not paying attention, but as soon as she notices, she grabs on to someone or slowly sits down.

We discussed transition with her case worker. On August 30th, she turns three and ages out of early intervention. At that point, her therapy becomes the responsibility of the DOE (department of education). So she will be starting DOE preschool on September 1st.

On Thursday she had speech therapy at Kapiolani Women & Children's medical center. She is working with the augmentative communication specialist there. Brianna did amazingly. They brought out the ipad, which has a lot of great applications for working with augmentative communication. Brianna had a hard time at first, she tends to pull in and have a hard time making her hands do what they need to do. But the therapists did great at helping her and drawing her out. And within 15 minutes she was interacting and making the ipad do what it needed to do. Watching her I realized that she understands a LOT more than what is obvious to us on a normal basis. Being able to use a device to tell us what she wants/needs will open up a whole new world for her. For now, Brant and I are researching which ipad we are going to purchase for her until we decide what kind of permanent device that we will get for her through insurance. We want to make sure it's a device that will last a while since insurance only covers them once every five years. So first we have to get her to understand how to make choices via the device, and how to use her hands to manipulate it.

We're also discussing the possibility of getting her a powered chair. Mobility will always be an issue for her. I have no doubt she will learn to walk, but she will never have the stamina and energy that a healthy child has. It's important for her to feel empowered about her mobility and to be able to move around with the control in her environment that typical children her age would have. Of course, being in a powered chair opens up a whole new world of complications - adapting the vehicle for a lift, deciding when and how to use the chair, and so on.

Thursday, after speech therapy, she had a bit of a rough afternoon. When we got home, she decided she wanted to explore outside, so I let her crawl around on the porch while I cleaned up the area. She was standing behind one of the chairs, holding on to the back, when I think she stepped back and lost her balance on the edge of the porch and fell back - pulling the chair on top of her. She cut her eye open, and we weren't sure how deep it was, so I took her to the ER to see if it needed stitches. It didn't, so we had a fun 2 1/2 hours sitting around waiting for them to clean it up, slap a couple steri-strips on it and send us on her way.



On Friday, she stayed at home with dad while the boys and I went to the beach with friends. Brianna had therapy at noon, and we wouldn't be back in time. It's good she didn't go because it was a fiasco of a day (though we did have fun at the beach), though that's a story for the family blog. =) Her dad said therapy went great, she was really interactive and excited. It's really amazing to see the positive changes in her.

Today was a little rough. She had a seizure this morning - which usually affects her mood and energy afterwards. I made a bad decision to take her in the stroller with her brothers and walk over to the arts and crafts fair about 1/2 mile away. It was a windy day and a lot of people. She was getting a little upset, so I tried to put her on the horse for a pony ride. She actually rode really well, I didn't even have to support her. But she was really upset and cried the whole time. I think she would have loved it if it hadn't been a bad day. She proceeded to continue to melt down, so I had her dad come pick her up and take her home. Where she was fine. *sigh* Bad mom.

So now she's taking a nap, and hopefully she'll wake up feeling better!



Here you can see she's figured out how to use the remote and what it's for, even if she doesn't know which buttons to push. She wasn't a fan of Kai Lan and wanted to turn it to Mickey. Smart girl!!!