Tuesday, July 6: Update

Claire will make her first return to a pool tomorrow. We hope Autumn and Heidi will be able to watch also. It will be therapeutic for all of us to see her in the pool again. It is a great opportunity to overcome some of our irrational fears in a such a controlled environment.

The pool therapy will be on Claire’s second day of decreased Ativan. Claire was much more alert today after halving the dosage for he first time this morning. We enjoyed seeing her eyes open for a significant day portion. Her agitation stayed static compared to yesterday and we hope the trend continues as we continually wean some of her medication.

We discussed her weaning schedule at our Care Conference today. We are very satisfied with the way the medical staff engages our concerns and suggestions. We had a lot of them today. We discussed nutrition and getting additional nutrients into her daily diet. We also discussed changing her feeding schedule to match a more normal cycle. We eliminated her 2:00 AM feeding and boosted the rest of her portion sizes throughout he day. If she handles this well we won’t have to get up at 2:00 anymore. We like that idea.

The Care team also gave us our list of equipment for home care. It was shorter than we expected. We liked that too. We have been hoping that the required equipment wouldn’t force us to get more living space: we want to bring Claire home to something familiar. So we are trying to avoid moving as much as possible. Today’s equipment list indicates that we can postpone or eliminate the need for a move.

We got further insight into where Claire is in the rehab process as well. The Care team is focusing most of their effort toward Claire’s medical treatment as opposed to pushing her rehab schedule. The doctors are waiting for Claire’s brain to calm down further before increasing her rehab intensity. This gave us clarity and helped temper our expectations for the next few weeks. It was information we needed to feed our patience which tends to wane over time.

We are hoping for another good night of sleep tonight. Thank you for your hopes and support.

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