Month: July 2022

All the Rumors…

Reflecting on July has us thinking about all of the rumors we hear or have heard about navigating the parental journey. This week alone, we realize… all the rumors are true.

It is difficult, it is challenging, and some days feel like you are walking in one giant circle. One step in the right direction sometimes throws you back to the starting point in the blink of an eye.

Then sometimes, you get it right. The joy on your child’s face is your reason.

Moments of up and down, right and wrong, each are a part of the process.

Love, strength, and honesty will always go a long way, too.

We look forward to our last month of summer creating more memories and navigating new territory.

Stay strong and be brave!

The Big Check Up(s)

Sunday came and smiles faded. The reality of scans, single and team doctor visits, and pathology soon filled our headspace. The team of medical providers we have is world-renowned. Seeing them and providing both a PCR test and saliva test for access was also a first. There is truly no place like The National Institute of Health.

Gratitude over the level of care we have is always there. Being in this facility is truly difficult to explain.

However, there is also something to be said for the way we feel watching Kelsey give ten vials of blood, monitored by ultrasounds and liver scans, and meeting with so many doctors.

All of the worry and concern return when reality stands in front of you.

Kelsey, as always, is brave and strong. As we waited for one imaging study, Kelsey asked, “How many more years do you think I will have to come here to be studied? Aren’t we working on a cure?”

Yes, Kelsey, we are. The timeline is still tentative, but we thank you for helping Kelsey achieve this goal.

Until we reach that goal, thank you 💜

Golf Gratitude

Thank you to all of the supporters who came to our third annual golf outing at The Legacy Club on Monday. This was our most successful outing, yet! The weather was pristine and not a cloud was visible in the sky.

Everyone has been so supportive and we appreciate you all. Kelsey was present for this event to see how many wonderful friends and family joined us to golf, assist, or support our efforts to find a cure in the near future.

Kelsey was touched and thanks you all. Hearing her impressions and appreciation made this event truly special for our family.

Thank you to all.

With each passing year and event, we are one step closer to a cure. We appreciate you!

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