Alli was home for exactly 8 weeks. It was her longest time at home in a year. During that eight weeks many things happened. See the photos below...
Josh started sitting up AND took up the piano!
Alli and Josh shared some deep conversations and playtime in her bed.
We went apple picking at BJ Reece Apple Orchards. It was a beautiful day for the drive up in to the mountains. We took my mom (yes, occasionally we allow her to leave the house), Samantha, and Josh. Alli stayed home with the nurse because we were concerned about wheeling her around the orchard in her wheelchair - it isn't exactly trail rated. We'll have to get Grandpa John to see what he can do about that ;)
Alli's wheelchair arrived! It is custom made for her and has her name embroidered on it in purple. She looks great in it and has already been out for several walks! There is a special compartment for her oxygen and an IV pole for her feeding pump, which makes things much for convenient when traveling outside the house.
First walk in her new ride! She was super excited about it, as you can tell.
Samantha participated in her second Montessori Mile. She loves to run! This year she ran with the 3 year olds, but we are considering signing her up for the full mile next year. The Montessori Mile is a fundraiser at her school, Springmont. Following the race they had activities on campus, so we spent some family time enjoying the festival that we primarily organized and run by the middle school students.
Samantha started gymnastics at the YMCA by our house. This past week was her first time up on the 'big girl' balance beam and the bars. Sorry the pictures are so dark - but I thought they were too cute not to post!
Early this morning we brought Alli back in to the hospital. She had some gagging and vomiting episodes yesterday afternoon and last night and we were unable to give her enough oxygen through the bipap for her to recover at home. So, she is in the PICU for observation. She slept very comfortably most of the day today. They are going to make an adjustment with her feeding tube, which they think may have been the culprit of the gagging and vomiting episodes. Overall, we hope this will be a short stay. We continue to talk with the palliative care team about Alli's treatment and our primary focus right now is to keep her as comfortable as possible. That has been our focus at home, as well. For the time being, we have narrowed her specialist follow up visits to only the essential systems (Cardiology, Pulmonology, Neurology, and Endocrinology) and make periodic visits to check in with the feeding specialist and physical therapist. Hopefully once her medicaid application is approved (God willing) we will be able to set her up with in home therapy. Her physical therapy regimen now consists primarily of passive range of motion activities, but she is showing some small signs of increased strength. She is starting to lift her head again for very short periods of time. We don't see any independent movement of her legs, but we do see independent movement of her arms. She is localizing to sound and we continue to work on fixating on objects, pictures, faces, etc.
We will keep you posted as things evolve in the hospital. We hope you all are doing well!
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