05/25/2024
Olivia 8 week Update 💜
I can’t believe it has only been 8 weeks. It feels like years. I haven’t fully or even partially processed what has happened. I feel like our life is a game of Wack-A- Mole. I am just smacking whatever problem pops up and missing quite a few! To those of you that sent Ubereats gift cards and Starbucks you have NO IDEA how helpful that has been! What Olivia won’t do for a $4 cake pop! And when I am wiped out and have been able to just order dinner delivered to the two of us without freaking out about the cost or dragging Olivia out when she needs to rest has been monumental!
Since we are past the 8 week mark I thought another update might be in order!
Olivia continues to amaze me with her determination and strength. I find myself wanting to throw a Mock 8 toddler level fit about getting in the car to drive to Seattle again, repacking suitcases again, repacking all the things again, leaving our family again but she is a trooper! Sure there are tears and she misses the other half of our family like crazy when we’re gone, but she is so wicked smart to know these therapies are helping her get better!
I’m not sure I ever explained about her therapies, so here is the breakdown.
Olivia receives 3 different types of therapies and given the needs/concerns after her surgery each therapy focus on certain areas of concern.
*Physical Therapy (PT) - the focus here is gross motor skills, balance, core strength, her right leg weakness, walking, running, jumping, basically the lower half of her body.
*Occupational Therapy (OT) - the focus here is fine motor skills, the weakness in her right arm, self help skills; like getting dressed, zippers, buttons, tying shoes, multistep directions, multistep tasks, sensory processing (this overlaps with SLP but in different ways - the brain is fascinating)
*Speech - Language Pathology (SLP) - this is not just for learning how to speak for Olivia the main focus with SLP is cognitive, how she processes language, sensory processing, relearning academics, coping skills, memory, multistep directions, multistep tasks,
One of Olivia’s Doctors does such a wonderful job of using analogies to explain this complex situation that is Olivia’s brain right now. They said to think of Olivia’s brain like a library. After surgery between the swelling, the disturbance, and the removal or brain tissue, all of the books have fallen off of the shelves. Some are easily sorted and go back quickly and easily. While others she needs help figuring out where they go.
*Also, given the type of surgery Olivia had there is a “window” of time 3-6 months where her brain will be the most malleable or trainable for recovery of information. (Putting those books back. )
We just completed our first set of 6 weeks of rehab-therapy. And reassessed where Olivia was at and what she would need moving forward. It has helped me to think of Olivia having to go back through the stages of life again. Right after surgery was like having a baby again she couldn’t walk or move, was in diapers, couldn’t communicate very well, I had to feed her. Each week she has relearned everything, to walk, dress herself, feed herself, go to the bathroom, to run again, to color, to hold a pencil, to write her name. She went through the things you learn as a toddler then a preschooler.
Currently she is about end of PreK to beginning of Kindergarten. Her baseline (meaning where she was before surgery in March) was beginning 1st grade. In the last 2ish weeks we have been able to rule out most of the things she can do (those books that were easy to go back) and now know what to focus on (those books that need help being sorted and put back). An example being Olivia can color but using scissors is very challenging right now. She could use scissors at 16 months because she was determined to do preschool with Jax! 😂 she can spell words and write them down but reading them is really hard, she has only tried once. There are some areas of her cognitive and sensory, “books”, that her therapists are wondering if they might continue to be a challenge for her (that was really, really hard for me to hear)
I was hoping that in the fall Olivia would start school as a typically developing 1st grader. The realization that our summer would be filled with continued weekly trips to Seattle, IEP meetings, neuropsychology testing, return to school plans, and our fall would be anything but typical. It was a hard pill to swallow. I don’t think I fully have, probably in deep denial actually. Might just live here for a bit!
Olivia prayer requests:
-That her brain continues to stay malleable past the 3 month mark and through the 6 month mark.
-That she continues to be willing to work on her therapy “homework” at home!
-she is becoming very attached to me, starting school is the fall is a big anxiety for her. Being around people is overwhelming both socially and sensory. Would you pray of her school start for her and I
Our family prayer request:
-It has been challenging to feel like a family unit. Emma and Jax feel that we spend all of our time, energy and money on Olivia and that is mostly true. Would you pray for some pockets of time that we can feel like a family, have some calm, some joy
-my work situation, this year was our first ever year as a one income family. I would hardly ever get called in to sub, but finding a job either part time or work from home or flexible enough to be there if Olivia needs me, has felt impossible. Looking to next year and the possibility of not working but taking care of Olivia vs working and feeling more financially stable has me very anxious. Would you pray for peace over staying home or that the right situation would present itself?
Thank you as always for being apart of our village, for loving us so well and your never ending support!
The Biggest love ever,
The Truscott Family
Ben, Jodi, Emma, Jax and Olivia
