I know … I say it every time, but I’m a terrible blogger. I don’t know if I even qualify as a blogger at this point. Nonetheless, our dear friends are inquiring on Jennah’s progress and I hope that others who may be beginning this challenging, yet incredibly rewarding, journey will find solace and support in these words.
I initially started this blog as a way to express my grief, rants and rage. But as the years passed, grief has turned into acceptance and extreme pride. I do get saddened when I look in the closet where cute dresses are hanging in a row … dresses that I never get to put on Jennah because they only get crumpled up beneath her or twisted up in her feeding tube. We’ll never have a picture of her running and twirling in a breezy little spring dress. Instead, we get proud pictures of her in a standing frame. But there will always be something supporting her, or someone holding her up; I worry that she can never truly be free. Perhaps it’s better to think that she’ll never be alone; she’ll always have someone by her side and always be loved.
Jennah has made amazing strides since my last post. Most notably, she is going to school 4 days/week and actually likes it!! You may recall that preschool last year was extremely challenging. Jennah was often ill, spitting up, crying, and having seizures. However, we had a very productive summer with medication adjustments, a lot of horseback riding, and the continuous feeds. She no long spits up and is able to control her drooling much better now! Her seizures still pop up from time to time, but they are overall well-controlled. I’ve been saying it a lot, but we really haven’t been here before, and you know, we like it here! Life seems almost “normal” and dare I say, some days are a little bit predictable. I take Jennah to school in the mornings and can actually get a couple hours to myself! I do have the phone near me at all times and dread getting a phone call during yoga or if I’m further away in Seattle, but so far, it’s been good! I don’t know what they do at school all morning, but she comes home smiling and dancing every day. I do know that the teachers, therapists, and staff at her school, Cascade View Elementary, are amazingly kind and supportive … we are so fortunate to be where we are.
Our last visit to the neurodevelopmental clinic has resulted in a very busy, and somewhat stressful, month! It’s been a long time since I’ve had to juggle so many appointments, but this is a good thing. We are going to revisit her oral motor skills and do a video swallow study. The results will help outline a feeding/speech therapy plan so that Jennah may be able to enjoy a little bit of social eating and perhaps vocalize a bit more. We are also going back to ophthalmology. This one is very exciting! We think she is learning to see a little bit! We’ve been noticing some gazes from her and her school had a vision specialist visit and confirmed that there is definitely something brewing with her vision! So we’ll want to see how we can help her reach her fullest visual potential … go Jennah!
And lastly, people are trying to get me unattached from Jennah’s hips. This piece is for me. I can’t seem to leave her side. I rarely even travel more than 10 miles away from Jennah’s school when she’s there. I know I have a very dependable support structure, but I can’t let go! So … one of the first steps for me to overcome my addiction to Jennah is a “durable medical equipment” assessment. The doctors (and my husband) want to move Jennah out of my bed. The biggest challenge with Jennah right now is sleep. It is common for children with cerebral palsy to have difficulty sleeping as their muscles tend to get tight or their brain is always on fire since everything little action that we take for granted, like sleep, is that much more challenging. However, Jennah can now move around and reposition herself better in her sleep now. I no longer need to wake every two hours to rotisserie-flip her. Am I to blame now for her restless nights? Me? really??! Oh yes, I am dreading this appointment for sure!