We are happy to share that Kennedy has been doing well since our update in September! Kennedy had the one initial episode of rejection at the end of August and beginning of September. It did take a few weeks for Kennedy’s levels to re-normalize but they have been fantastic since then.
She officially hit 3 months post-transplant on November 6th. This fact plus her consistent normal blood work has allowed for two changes. First, she “graduated” from seeing the transplant surgeon! Kennedy’s main doctor is now her pediatric liver specialist. The surgeon will see her at her one year check up but does not need to see her before then. Second, Kennedy got to switch from having blood work twice a week to only once a week! This is another exciting change for Kennedy. She is doing very well with her blood work, but it’s still nice to have one less poke a week.
Kennedy is also currently weaning off two meds. One of them is her steroid – so this means that we are finally taking naps again and are sleeping fairly well at night! All parties involved are very thankful for this 🙂 She should be able to come off those two, and most likely a third, at the beginning of December. We have been playing LOTS. Kennedy is such a happy and energetic little lady. She is spunky and sassy (not sure who she gets that from?). We all love going outside – for walks, digging for rocks, and playing at the park. She loves to dance and sing – her current favorite song is “wheels on the bus.” Mom and Dad might be a little sick of it by now 🙂 She still loves baths and arts and crafts – especially play doh. The other big thing we tackled was potty training! We started at the end of October and she is doing extremely well with it.
Kennedy’s 2nd birthday is coming up at the end of this month and, to be honest, we can’t believe it’s here. Kennedy started getting sick (although we didn’t yet know what was to come) two days before her 1st birthday. So this is really all coming full circle. We couldn’t have imagined what this last year would bring. We continue to be so very thankful for our sweet girl, her current health, and all of the love and support we continue to receive. Thank you so much for all of your continued donations, prayers, and positive thoughts. We appreciate them all so much!
We’d also like to address the change to the fundraising goal for COTA for Kennedy. COTA works with families to determine fundraising goals, and do so knowing that the goal is to raise funds to help for several years, and knowing that many volunteer teams have had more challenges with fundraising during the pandemic and that fundraising happens much differently than in the past. Fundraising goals that are suggested by COTA are what is needed for any patient’s long term expenses and transplant related costs. Due to the medical situation facing Kennedy at such a young age, we are anticipating a larger than normal patient expense over time. Due to this, we worked with COTA and decided to increase our fundraising goal for COTA for Kennedy. This better reflects the true long-term expenses that we will incur in the future.
Thank you again for all your love and support! Please don’t hesitate to reach out with any questions.
Nick & Jillian Tomsche
With the Thanksgiving holiday past us and the Christmas season yet to come I was thinking how amazing and trying this last year has been for all involved.
I’m am truly thankful for all the miracles that the doctors and specialists have provided as well as all the love and support that family, friends and the community have given and all the generous contributions that will support Kennedy through her journey. It has been like Christmas all year long. We’ve been blessed with the gift of life for my granddaughter of which we are all so grateful for. I’d like to personally thank everyone for all their kindness. And especially the family that so selflessly donated the liver that gives Kennedy the quality of life she now enjoys.
Thanks to God!
Love you all. And thanks for the love in your hearts that made this all possible.
Sincerely, Jeff Miller
With the Thanksgiving holiday past us and the Christmas season yet to come I was thinking how amazing and trying this last year has been for all involved.
I’m am truly thankful for all the miracles that the doctors and specialists have provided as well as all the love and support that family, friends and the community have given and all the generous contributions that will support Kennedy through her journey. It has been like Christmas all year long. We’ve been blessed with the gift of life for my granddaughter of which we are all so grateful for. I’d like to personally thank everyone for all their kindness. And especially the family that so selflessly donated the liver that gives Kennedy the quality of life she now enjoys.
Thanks to God!
Love you all. And thanks for the love in your hearts that made this all possible.
Sincerely, Jeff Miller