Sarah Rise Weekly Updates

Last Sunday Sarah had her piano recital and did a beautiful job, as always. And, as always, I felt a bit teary watching her. In the earliest days of wondering if she would ever crawl or talk or reach for a toy, who would have ever thought she would be up in front of a… Read more »

After Amy’s second class of cheerleading, which she hated just as much as the first, she was able to switch to an improv class that her best friend is in. She LOVES it!! Absolutely loves it. Sarah’s first private swim lesson went well. She refused to get in the water until her teacher arrived, which… Read more »

Thank you to all who reached out in support regarding my aunt. She died peacefully Tuesday evening. I’m so grateful that I got to see her first and say goodbye, and I’m also sad that she is gone. Sometimes you just know a person loves you even if you may not see each other often…. Read more »

This update is dedicated to my aunt J. who was recently placed in hospice care. In addition to reading my updates and cheering for our journey all along, she and my uncle financially supported the Sarah-Rise Program and made it feel easily possible to do whatever we thought could be most helpful for Sarah. My… Read more »

I know I haven’t been able to find all lost things, but the number of times I have found Sarah’s lost rings and the manner in which I have found them astounds me. Yesterday she lost a favorite ring while playing in a large pile of leaves at our house. I found the ring after… Read more »

From the recent concerns about Sarah’s lack of appetite and weight loss to the current issue of her being “pausenated” (constipated) we are having a serious case of deja poo. Sigh. I never thought we would be dealing with these issues again and here we are. The good news is Sarah’s appetite is definitely better even if not… Read more »

Due to Sarah’s notably decreased appetite, we stopped the Prilosec (for acid reflux) and Allegra (for seasonal allergies) for Sarah (with the blessing of the pediatrician even though she didn’t think that was the issue). We reduced the Oxcarbazepine (for seizures; under the guidance of her neurologist to slowly wean off of it). We stopped… Read more »

On Monday Carl was working from home since Amy was home sick and I had clients. When it was time to fix lunch he went to leave his laundry room home office only to discover that the doorknob no longer impacted the latch in any way. So even though that door doesn’t have a lock,… Read more »

First, I want to follow up on the whole bathroom screaming situation – when Sarah screams and pounds on the door if Amy is in the bathroom. When I last wrote about it it had seemingly miraculously stopped after Carl, Amy, and I decided we would ignore it completely if it happened. Well. I knew… Read more »

This has been one of the craziest weeks I can remember. Sarah has yet to attend school for a full week since school started at the end of August. This week she missed two days in full and one partially. I kept her home on Monday because, though her covid test was negative, she was… Read more »