We just found out that we may be going home Friday or maybe as early as tomorrow. We knew we were on our way out next week, but tomorrow..??? I honestly don’t know how that is going to work. We have NOTHING at home for Lily’s care. I know they are feverishly working on getting our equipment and supplies lined up but I would be amazed if they can pull it off in a day. They have to submit requests to insurance and who knows when they will approve or disapprove. I know the big ticket items take months to get like a custom wheelchair, bathing chairs, hospital bed…..oh my I’m so overwhelmed. Breathe.
Lily continues to make little steps of progress. She is tracking well with her eyes and head. She is getting movement in her arms. She is able to taste yogurt and whip cream. We even see some smiles from her. But her spasticity is becoming more of an issue. We have upped her dose of medicine and even added a second one. She is in pain and crying before she gets her medicine and after she gets it it puts her to sleep for hours. Either condition is not conducive to therapy. So we are now reconsidering the Baclofen once again. We plan to continue therapy at Millers as an outpatient. Unfortunately she will go from 6 days down to 2. We have to make up the lack of therapy on our own. If you know of pediatric therapists in the area (OT, PT, Speech) that you can recommend we’d appreciate your referrals.
Thank you for your continued prayers and thoughts of Lily. Please keep them coming!