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Daughter update

tubabucknuttubabucknut Posts: 3,520 Senior Member
There have been some medical updates of late so I guess it is my turn. We have been using church as an opportunity to try our daughter out on room air. Meaning no oxygen. For the last month she has done 2-3 hours without oxygen every Sun. She does this while maintaining minimum, even high, saturation levels. She is just now getting to the point she can maintain a healthy oxygen level under Ideal circumstances. This is great news as when we brought her home from the hospital a year ago there was a possibility she might need vent support for the rest of her life. As of thanksgiving she will not have had been admitted to a hospital in a year.
She has been practicing walking with a specialized walker. It supports her head, full torso, and weight. She has what is called spastic quadriplegia. She can move all of her limbs, but has only sporadic conscious control. Her seizures are now more controlled with medicine.
We look forward to the spring, and decanulation. Then we get to work on eating by mouth and getting rid of the feeding tubes.
We will be adding another doctor to her list of 12 already. She will soon be seeing a developmental pediatrician. His job will be to help her excel. Most of here cares up till now have been about keeping her alive. This is a new and exciting step for us.

All is still positive and good.


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