Thursday, May 20, 2010

May Photos

We are having a fun month of May so far! The highlights have been several trips to Meijer Gardens, walks to the neighborhood park, and a Whitecaps game we attended with Ellie's school. Enjoy these pictures, and others in the photo album.

Thursday, May 13, 2010

Video *edited

I get a lot of requests for updated video of Ellie, so when she started talking today, I seized the opportunity. When I lay her in her crib to change her diaper, she immediately brightened and started chattering. Her talking and excitement often makes her muscles start to tense and contract, so sometimes her noises have undertones of discomfort mixed with happiness.

**eta: I fixed the video. Sorry it wasn't working for everyone.

Saturday, May 1, 2010

Ellie Update

I thought it was time for an update on our little princess. She has had a busy month!

Ellie's heel cord surgery was successful, and we got the casts off before our trip to Florida. It is so neat to see her foot in the correct position. The day she got the casts off she also was fitted for new AFOs (ankle foot orthotics). She will need to wear them around 20 hours per day to ensure that she maintains full range of her heel cord. Here is a picture of Ellie with her AFOs on:

The same day, Ellie was also fit for a TLSO brace (Thoracic Lumbar Sacral Orthotic). This brace will help support her spine since she does not have the muscle tone to hold herself up. Ellie is starting to get scoliosis because when she is sitting in her wheelchair or in any upright position, her body slouches and she is not able to maintain a straight upright position. This orthotic goes around her torso and holds her in an upright position without slouching. The first time we put it on her and set her in her wheelchair, she was a full two inches taller and her shoulders were up around her headrest! That showed us how much she was slumping in her chair.

In other news, we received the official word that Ellie has been approved for a type of Medicaid for children with special needs. This will pay for the in-home nursing and also a few other medical things that were not covered before. This is a huge blessing and a happy ending to the six months that I have been working on it. We have started with some daytime shifts of nursing, and it is going well so far. I am able to concentrate on schooling the boys and not worry about Ellie's needs being met. I am also able to enjoy Ellie while the nurse works on her equipment and other tasks. We have had a few evening shifts and spent some focused time on the boys at Frederick Meijer Gardens, as well as a had a date night! I think this will really help me juggle the needs of all the people in our family.

So that is what is going on right now. We praise God for seeing Ellie through another long winter and for his mercies new every morning!