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Spring Into Summer - 2022



Since my last update, Evelyn had her MRI with miraculous results. The brain hemorrhage she had at birth has healed completely, which the neurologists said would never happen. When she was one year old, we were told she would always have scarring on her brain, and it would have to wire around the damaged area. We met with a new neurologist and went over the results of her EEG, and she was officially diagnosed with Focal Epilepsy with Secondary Generalized Seizures. This means that she has likely had focal seizures (no loss of consciousness) her whole life, and we were unaware they were happening. This also means that she is susceptible to generalized seizures (grand mal/tonic-clonic/loss of consciousness), especially with other contributing factors. In the case of her January seizure, COVID likely caused the seizure.


The next step is a round of genetic testing that we wanted to do when she was nine months old but couldn't afford then because our insurance considered it experimental. Now it's deemed to be diagnostic and is covered, so that's great news. Oh, how time changes things. We should get the results of that testing in August.


March and April were packed full of travel and birthdays. We drove from Arizona to Florida to visit family in Panama City and Orlando, and we spent a few days at Disney World. Our kids spent the first three years of their lives going to Disney (when we lived in Florida) and are still experts on all the parks. This time around, though, we had the opportunity to go on rides we'd never been on before, including Pandora at Animal Kingdom. Evelyn was terrified at first, but the second we stepped off the ride, she asked if she could go again.


We stuck to our tried and true favorite restaurants, celebrating Liam's birthday at Rainforest Cafe in Animal Kingdom and Evelyn's birthday at Be Our Guest in Magic Kingdom. We'll never forget the first time we went to Be Our Guest for Evelyn's third birthday. She wore a Belle dress and met and took pictures with the Beast. He even danced with her. Seven years later, they weren't able to dance or meet one-on-one, but occasionally the Beast would walk through the dining room, and every time he did, Evelyn would stand and curtsy to him. It was so sweet.


Evelyn's favorite ride this trip was Mickey and Minnie's Runaway Railroad. One of my highlights was drawing Goofy at the Art of Animation. Liam is a budding artist, and I loved sharing that experience with him. Liam's favorite ride was Pandora.


Even though we celebrated the kids' birthdays while traveling, we decided to have a belated birthday party in April since they didn't have a birthday party last year, and the year before that (2020), we had to cancel because Covid had just shut everything down. They were both thrilled to have friends over, and although it was a hot day, I think everyone had fun. We even had an Easter Egg hunt in our backyard!


We went to our community's Eggstravaganza for Easter, where the kids did an Easter Egg Scramble, Liam went through a bouncy obstacle course 30+ times, and Evelyn met the Easter Bunny. They both had balloon animals made. Evelyn got an elephant, and Liam got a super-cool T-Rex. There was even a petting zoo. Unfortunately, Liam came down with a fever that night, so the kids and I stayed home Easter Sunday while Barkley went to all four services as a volunteer.


In other news, I quit working at Amazon and have started a position as a Valuation Assistant for a Commercial Real Estate Appraiser. It's a work-from-home position with flexible hours, so I feel very blessed with the opportunity.


Time is flying by. Mother's day was excellent. On the Friday before, Liam's class put on a Mother's Day Tea event, complete with performances, poetry, lemonade, and snacks. Evelyn and I attended a Mother-Daughter Brunch on Saturday, and then my family took me out to dinner at our favorite dairy-free restaurant. Sunday, we relaxed.


School is officially out for the summer. Liam has had one day off and is already bored and asking when school will start again. It's hard for me to comprehend that Evelyn has been homeschooling for over one year now. It still feels very new to me. We recently learned that a few Arizona education laws changed last fall. Previously, Evelyn didn't qualify for the disability scholarship because we didn't reside in AZ from August to September 2020. With the change in the law, she now qualifies for the funding. We are looking ahead to determine if there is an Autism school that might fit her better than homeschooling or if we will continue homeschooling and use the funds to cover her therapies and potentially a math tutor.


Thank you for your continued prayers and well wishes for our family. We continue to draw close to God, lean on Him, and choose faith over fear. I've often felt weak and defeated over the last two years, but I have also felt moved and led by God like no other time in my life. So I cling to Jesus' words in the book of Matthew, "Come to me, all who are weary and burdened, and I will give you rest." I think we are finding that now.


As we launch from spring into summer, I'm praying for a slowing down of life and for the ability to rejuvenate before the next rush of activity. If you're in a similar season, as I imagine many people are post-COVID, I'm praying for a rejuvenating summer for you, too!


Love,

Stephanie Rose


P.S. Usually, I try to intersperse pictures into my posts as I write, but that is the time-consuming part that stops me from getting the posts written, edited, and posted every month! So, this time around, I'm just going to add a little gallery here that you can click through at your leisure. The pictures start in May and work their way backward.



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