We first wanted to give a big thank you for showing up for our family in a big way. The outpouring of love and support has meant so much to us. We also hope you have enjoyed reading the updates and learned a bit more about Camila. 

 

Camila’s work ethic is truly incredible and we attribute all her successes and acquired abilities to her. We wanted to take a moment on this platform to celebrate Camila’s abilities, as we are just beaming with pride for our sweet girl. 

 

After seven months of consistent therapy working towards this specific skill, Camila can officially sit unassisted. As her hypotonia impacts her core, she has worked hard strengthening her abdominal muscles and learning how to purposefully activate those muscles while seated. It is a tremendous accomplishment and has significantly increased opportunities for play, while also allowing her to pivot while seated. Camila can even scoot forward towards a toy that is just out of reach. Since she is working towards developing her protective reflexes, we sit behind her to ensure her safety and instill confidence, rather than fear. 

 

Camila has also developed skills towards movement while in prone (tummy time). She can now "zombie crawl" for short distances towards motivating toys. She can utilize one or both arms to pull her body forward, without purposefully using her lower body. Camila will even occasionally weight-bear through both hands during this form of movement, which is so incredibly skillful and brave. Camila now feels more independence during play time, which is crucial for her development. 

 

We also have a little parrot, a very strong communicator who can impressively repeat the words she hears with much clarity. Camila can also remember and state the words of objects in her environment, without prompting. Needless to say, we have a little brainiac on our hands. 

Camila continues to work on numerous other skills within her therapies and these skills are increasingly challenging. For example, her fluctuating muscle tone significantly impacts her ability to use extensor (muscles that straighten or extend joints) and flexor muscles (muscles that bend joints) simultaneously. This makes it difficult for her to coordinate muscles that need to work together for certain movements. For example, when one set of muscles (like the extensors) is activated to straighten a limb, the flexors should typically provide a controlled counterbalance. However, this is not Camila's experience as her muscles don't always respond predictably. Her body also faces difficulty with co-contraction (when opposing muscle groups contract simultaneously to stabilize a joint) which impacts her ability to achieve stable, controlled movements. Camila is also underresponsive to proprioception (the sense of body position) and difficulty with motor planning, impacting her ability to gauge the necessary amount of muscle activation required for a task.

As you can imagine, all the effort Camila is placing towards ongoing development is exhausting and can feel distressing at times. Since her body is working against her in many ways and we don't yet know what her abilities will look like in the future, we have been making an active choice to increase independence and self-exploration. One huge way of fostering this is with a wheelchair. The Permobil Explorer Mini is a mobility device that is self-initiated with a joy stick. This would help increase independence and opportunities for social participation. It would also support her development through continued core strengthening, spatial awareness, body awareness, problem solving skills, receptive and expressive language, etc. Through continued fundraising efforts, we hope to purchase durable medical equipment that will significantly improve Camila's life. We welcome you to share this Support Now page with your network of family and friends to help us reach our fundraising goal. 

 

Lastly, we wanted to share a resource. We recognize that it may be difficult to understand the experience of caring for a disabled child or to fully understand our own family’s experience. If you are interested in not only learning more about the disability community but also learning how to support our family, we would encourage you to listen to The Rare Life podcast. It is a podcast hosted by a fellow caregiver in the disability caregiving community who speaks with many other families and notable professionals who provide direct care or inform disability policies. We personally listen to The Rare Life and find it often validates our own experiences. Please see the link below and the list of episodes we would recommend beginning with. 

 

https://therarelife.org/ 

*can listen on Spotify, Apple Podcasts, and Google Podcasts 

 

Recommended Episodes (in no particular listening order): 

157, 153, 148, 132, 123, 104, 96, 94, 70, 51 

 

With love, 

The Weilnhammer Family