Saturday, January 3, 2009

January 3, 2009 12:37 PM

We have been home a week now. Jacob is today for the first time in 3 weeks tolerating a regular feed. It is not the same volume and the same speed as before, but we're not on continuous feeds any longer!!! So, what did that all just mean? It means that Jacob has been hooked up to his feeding pump for a very long time around the clock in order to get his nutrition. Now, his feeds take 1 hour, and then he has 1-2 hours break in between. This will help Jacob to gain strength back, since he can move more freely and play with his sister again! It will indeed help us all to get back to a more normal routine.
Jacob's chorea is not improving with the medication. He has pretty severe shaking throughout the day, and can't hold on to anything when the shaking is at it's worse. We will call his doctor on Monday to see if we need to increase the medication even further. Secondly, we have an appointment with the new movement disorder specialist at Children's on the 16th of January. Keep your fingers crossed that we can medicate this, since this is making it so hard for Jacob to grab and hold on to anything with his hands.
On Monday, we have an important meeting with the Director of Special Education for Adams 12 school district to decide on Jacob's preschool. We're hoping they have made the decision to make Bal-Swan his preschool. If not, we'll have to say no thanks to public preschool at this point. We just can't see how a public preschool could take care of Jacob's medical needs at this point. We'll keep you posted!

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