Shiloh Clayton

If you know our spunky, clever three year old daughter – you know joy. Shiloh has been a force from day one when she came into our lives way earlier than we had hoped or expected. If you spend some time with her and watch her briefly, you will see a determined little girl smiling and trying to keep up with her sister. You will surely laugh and smile at her wittiness and humor. Spend a little more time observing and it might start to become clear that things are trickier for her – her balance might get thrown off by the slightest change in surface, she gets fatigued easier than her peers, her gait might seem a little wobbly, you’ll notice her up on her toes and walking less efficiently. All of these things you observe are due to her having Spastic Hemiplegic Cerebral Palsy.

You may remember my early posts when Shiloh joined us in June of 2020. At 30 weeks pregnant, within 2 days I became very sick. It all felt surreal as they discussed which method would be used to lifeline to me Indianapolis and started prepping me mentally that I would deliver soon and my baby would go to the NICU. Quickly, I was on my way to Indy and pleading that our little girl would keep fighting as my body was failing me. I was able to make it a few more days, with lots of assistance from steroid shots and my not good friend magnesium sulfate. Shiloh was delivered via emergency c-section when her stats tanked. A book could be written on the amazing nurses and staff that were in the right place at the right time to catch things before it turned even worse. I’ve never felt more relief than when we heard that little two pound baby girl cry.

Shiloh started her life in the middle of a pandemic, being a premie with an additional birth defect. Year one was spent with 49 days in the NICU, attending countless follow up appointments and 3 surgeries for her cleft. We joked that our only social interactions that year were with medical professionals. Through it all, she has been a joy despite having so many obstacles to overcome and has gained an intense resilience.

After making it through the surgeries around one year old, we noticed that her walking and balance wasn’t age appropriate – even taking into account her “adjusted age.” This was incredibly difficult as emotionally we were spent from getting through the surgeries, thinking the weight would begin to lighten. We began asking questions, going to different doctors to see how to best support her with physical therapy and orthotics. In March of 2022, we saw neurology and they confirmed with an MRI that there was trauma at birth that has impacted the right side, and we received the official CP diagnosis.

Navigating the world of physical medicine doctors, physical therapists, orthotics, and trial and error has been an exhausting and full time job. Through some online support groups and research groups that we joined, we found out about a therapy called Dynamic Movement Intervention (DMI). We applied for a 3 week therapy intensive at NAPA, got approved and accepted to attend in November of this year. After applying for this therapy program in Denver, we learned that a new clinic had opened in Carmel to be one of the few in Indiana to provide this type of therapy. We were thankful to be able to participate in that therapy in May of this year and saw Shiloh’s confidence skyrocket. We did 1 week of intensive therapy to see how she would do and get her ready for a 3 week Intensive in Denver.

We have committed to do whatever is within our means to make sure that Shiloh is getting the support and access to resources that she needs to thrive. We believe that this therapy is a critical step in following through with that commitment. Even with primary and secondary insurance, applying for grants, and looking for other financial options – this decision puts a stress and a strain on our family. While my pride does not like asking for help, I know that there are people who love Shiloh deeply that want to support and advocate for her alongside of us. Which is why we are writing. While we get the final numbers together and wait to see what insurance will decide to cover, we are looking at $8,000-10,000 out of pocket for this opportunity.

We are hoping to raise $5,000 to go towards therapy, lodging and travel to make this Intensive therapy possible.

Some might ask is that really worth it. We believe so. There is good research around the effectiveness. NAPA says you should expect to meet the next milestone and get results from 12 months of typical therapy in this 3 week timeframe. While no one has a crystal ball to predict exactly what the diagnosis will mean for Shiloh, we have been told she might need a chair to keep up with her peers at school. If she does, we will support her and work with her to have all the resources she needs. There is also pain associated with muscle tone and tightness that she experiences. If we can invest in these type of effective therapies and there is a chance that it is going to significantly impact the support that she needs in the future, pain reduction, and quality of life – we want to give it all we have while we have the chance to provide her with early intervention.

We appreciate our community and village. You all have walked through so much with us. Even when it’s hard to be vulnerable and ask for support, we know that people show up and want to be apart of providing good in our world.

With Gratitude,
Zach, Christie, Malia and Shiloh