The Otter and an Update

Yesterday Ruby and I went back to Mary Free Bed rehab hospital where she was fitted for a bath chair.  We ordered the cute, green chair called, "The Otter".  This should make bathing Ruby a lot easier as she continues to grow taller and heavier.  She does love the water, so I am glad this chair sits low enough in the water that she can still have fun in the tub. I am not sure how this will work being in our main shower all the time, but we will figure something out. It does fold up so that helps.

Here is a picture of the chair.... it will be a while before we actually get ours, so for now a photo from the internet will have to do.

Ruby's spasm count has stayed a little lower than normal because of the Zonegran.  The last couple of days we have been around 15 each day, which isn't as good as Monday was, but much better than 25 or 30 a day, so we will take it.  Unfortunately, Ruby's tonic seizures (the newer ones) have continued to happen 2-3 times each week and they are getting a little more intense and a little longer, so we feel we have to do something more to stop them. We will be adding the med Banzel as soon as it gets approved by insurance and ordered by the pharmacy.  

I have been researching and reading more about the ketogenic diet and I really think we need to give that one more try.  Since starting that diet involves a 4 day hospital stay that needs to be scheduled and approved...etc, I don't think we will start that for at least another month, if not longer.  So for now, we will enjoy the slight improvements the meds have given us. 

Despite all this new medical stuff....new diagnoses, new seizures, new meds, new equipment....God continues to give us joy and peace.  Yesterday morning it was raining, but when I looked out the window I saw the sun shining through the clouds, even though the rain continued. That sunshine reminded me of how I often feel.  Ruby is a blessing, but life with her is tough sometimes.  God hasn't taken the rain in our lives away, but I often feel the sun peaking through anways. That peace and calm about the future can only come from a loving God who reminds me over and over that He holds the future in His hands.  We will keep trusting Him while we strive to take one day at a time.