Kennedy&Huxley

Huxley is engrafted! Also don’t mind her bruise she fell while playing and her cheek is from the tape from being intubated when they took it off, a layer of skin came with it. She still has a little ways to go before we get to go home but her little body is doing all the right things right now! Thank you everyone for all the love and support 🫶🏼 #dwarfism #CHH #BMT #hospital #transplant

We had some very unexpected complication come up in this BMT. Her line was giving us issues right away, and it was decided it needed to be fixed when the cuff of the line was exposed. We didn’t think it would create so many more problems but we are so glad we got it fixed when we did. Huxley is doing okay now and we just hope that in the next two weeks her counts come in and she starts to feel much better. #dwarfism #CHH #BMT #hospital #transplant

Life isn’t always what you think it will be but we are grateful for the strength Huxley shows us each and everyday. She is such a blessing. She is so strong and brave and can make it through anything. #dwarfism #CHH #BMT #hospital #transplant

Huxley is feeling pretty good after her transplant. She is nauseous but otherwise handling things well. The doctors do not have any concerns right now and we are just waiting her her ANC to go up to 500 and above for three days in a row to say that she is engrafted, meaning the BMT took. More to come but enjoy Huxley’s laugh and playing with a puck bag! #dwarfism #CHH #BMT #hospital #transplant

Huxley got her second BMT today. It happened later than scheduled due to a delayed plane but she got it! They had trouble getting it to flow in at first and we had to move to the floor as it enters her body by gravity not a pump. I got to get it started and our wonderful nurses got it going faster for us! She did great no reaction and now we wait for engraftment. Hoping that happens in the next couple of weeks. Again we are so grateful to her donor who has not only donated to her once but twice now. They are saving our baby girls life and we could never repay them but we hope they know how grateful we are for them. #dwarfism #CHH #BMT #hospital #transplant

Just making all the fun toys with the medical supplies ☺️ They have a couple of these little guys out on the floor and I thought Huxley would like some and we can hang them up in her room! #dwarfism #CHH #BMT #hospital #transplant

Huxley loves to take care of her baby even when she isn’t feeling the best! This is literally the cutest thing in the world 🥹 She is baby obsessed right now! Even tho everyone think she’s still a baby 😂 #dwarfism #CHH #BMT #hospital #babydoll

Huxley has her last treatment tonight. She has been feeling okay through them but they are definitely killing her system. She is still wanting to play just very little & taking lots of naps. Her transplant is happening on Tuesday the 20th. We are so grateful for her donor saying yes to her a second time. We will keep you guys updated as best as we can. Thank you for all the love and support! #dwarfism #CHH #BMT #hospital #transplant

We have moved into the hospital. Huxley is doing as expected. She doesn’t always feel the best but she is still playing, just a lot more naps. Mom and dad are figuring out the best schedule for us to get school and work done while still being with Huxley as much as possible. Thank you everyone for the support. We are so grateful for all the prayers as Huxley undergoes her second transplant. More updates to come. #dwarfism #CHH #BMT #hospital #medicalmom

Thank you to everyone who has sent Huxley a gift!! We are so grateful for everything and over come by everyone’s kindness to want to spoil Huxley as much as we do❤️ we love you guys! @Amazon #dwarfism #CHH #medicalmom #BMT #unboxing

This is everything I have packed for Huxley to be admitted into the hospital for about 2 months. I can always bring more but now that this is our second round I think I got just about everything we will need to make her room feel like home for the next couple of months. @Fisher-Price @Kudos Diapers #dwarfism #CHH #medicalmom #BMT #hospital

Huxley last clinic day for the next couple months! It was a fast one just final labs and a check on her central line. #dwarfism #CHH #medicalmom #BMT #hospital

Huxley had surgery for her central line for her BMT and her ovary was removed to help preserve her fertility for the future as chemo can damage that. Surgery went well and she is all ready for her second BMT!! #dwarfism #CHH #medicalmom #BMT #hospital

This little lady is so busy these days! She loves her puppies and can’t wait until the day they listen to her😂 Also loves a good game of hide n seek! #dwarfism #CHH #medicalmom #toddlersoftiktok #dogsoftiktok

Huxley may not eat food by mouth but this girl loves her Pablo’s salsa and chips! If you are in the area check them out, Pablo’s in Shakopee, MN, Huxley loves them and you will too! #dwarfism #CHH #gtube #toddlersoftiktok #chipsandsalsa