Plugging along...

Before I get into a little update about Annie, I thought I'd let you know that Justin was asked to speak about Annie at our church service this coming Sunday. He'll be sharing information about her diagnosis, recent illness, her abilities, how to interact with Annie, as well as the blessings she brings to our family. All are welcome to attend. It will be on Sunday, October 13, at 12:00-1:00pm at The Church of Jesus Christ of Latter-day Saints, 12009 S. 84th Street in Papillion.

Annie is still doing about the same. There's not much new to report with her health.  She is still struggling with congestion from her cold and we're dealing with a lot of drool. Her increased secretions may be from her cold, but she also has developed a canker on her tongue which increases her secretions and makes her want to stick her tongue out all the time.

The swelling in her eyelids is persisting, but the swelling in her feet is coming and going, along with her distended tummy. We visited her pediatrician yesterday, and he didn't seem concerned about her swelling. Her blood pressure is good and her kidneys seem to be working well and have recently been scanned multiple times, so he attributes the facial swelling to her cold.

The pediatrician checked Annie's urine yesterday and the UA results were really good, but we'll have to wait a few days for the culture results. She also had a plug in the catheter that is being sent to the lab, since that was unusual and a bit suspicious. She's still having a couple seizures each day, mostly the outbursts of either crying or laughing, which seem to happen mostly in the middle of the night. We won't start weaning off the phenytoin until Annie is over her cold.

Last night Justin and I took Annie with us to the Med Center to attend a class on transitioning to adulthood. They offer a full series of classes to help parents like us plan for our special needs child's future after high school. While the classes are incredibly helpful, they are a bit somber to attend. They are a reminder to every parent in the room just how different of a life our children are living from what we had once hoped and dreamed to experience with them. But that room is also filled with parents who are full of resiliency, have incredible love for their children, and are powerful advocates, dedicated to providing their children with the best future possible. It's easy to look around the room and think, "These are our people--they know our struggles."  It was also fun to see another Aicardi mom tonight that we're friends with. There are very few of us in the Aicardi world, so it's nice to see them when we can.

Last night's meeting was on SSI benefits and managing our adult child's finances and benefits. Other class topics include learning about going to court to get guardianship, DD services, day programs for adults, continuing education, insurance and waiver programs, transitioning to adult medical providers, and so on. There is so much to learn!

On another note, the biggest highlight of my day today was that a sweet member from our church came with her professional cleaning crew to clean my whole house! She owns a cleaning company and called me to say she wanted to come clean our house! I was so humbled and grateful, but I had no idea that she would be bringing two other women to help her and they would spend more than 4 hours cleaning! My house hasn't been this clean since we moved in! We are SO thankful for such meaningful service! With Annie in the hospital and then even at home with her requiring so much care, we often just don't have the time or the energy to spend time cleaning. I was so embarrassed to have them see our dirty, neglected house, but they all just happily worked for half the day! What a huge blessing!