Post BMT day 276
+276
This week went fairly quickly. Monday is always our PT day at home. Tates PT, Abby, brought her table in and worked on Tates tissues from knee down to try to release some of the swelling. It’s constant now in both knees, ankles & feet. We still don’t have an exact answer why. In a non BMT kiddo, there’d likely be a rheumatological dx at this point. With a bone marrow transplant though, it is “highly unlikely,” that it’s a new or recurring autoimmune disease, so we sit to monitor labs. Frustrating! The new pain meds really are not working and Tate tries to catch up on missed nights sleep with naps. PT again on Friday and Tate rocked it. It’s the first “strength” building PT I’ve seen her get completely through. Tuesday our Homecare nurse, Diana, comes. She draws labs (because they’re ordered by GI, I can no longer draw them-so much protocol!) and helps with anything else we need. Tate is pretty particular with her mom doing dressing changes, etc, but we always appreciate her company too!
We saw neurology and psych this week. They would like to repeat her spinal tap that showed inflammation in her cerebral spinal fluid a few months ago. But as Tate has many specialists, everyone has to agree before proceeding. I lived in denial of any movement disorder for quite awhile. But I’ve seen it pop in and out enough (exacerbated by illness or stress of any kind,) that Im finally at a place of acceptance. Tate is on a couple medications that do a good job of controlling it most of the time. Super grateful for that! We are scheduled to see the adult movement specialist at University the end of March. I imagine that’ll come before we’re ready for it.
Tatum needs her GJ feeding tube swapped out which is typically done awake with interventional radiology. (We’re already a month late.) Any medical intervention or procedure induces high levels of anxiety at this point, so we are praying they’ll combine it with a sedated lumbar puncture (LP)
Most importantly, this was the weekend for little Kodys celebration of life. Friday night Tate and I joined Kody’s Warriors for a gathering and some food. Katy Nichole (Christian music artist) has developed a special relationship with Kody and his family ever since the concert at Red Rocks where she sang “The name of Jesus” and over 9,000 people prayed over him. It went viral and has touched 5 million people! She came to the gathering Friday night to sing that song with Kodys little sister, Kennedy. Katy Nichole is a favorite in our house and we were pretty excited to meet her. But she came early to the gathering and we sadly missed it. Such a blessing for Kodys family to have her present! Pop over to Kody’s Warriors to see the video. It’s also a song that was sent to me probably twice a week as Tate was going through transplant. It’s perfect. And beautiful.
Today was the celebration of life. It was beautiful and so emotionally tough all mixed together. So many emotions surface with the loss of these kiddos from our medical family. We love you Brooke, Tyler and Kennedy and are praying so hard for the strength for you to keep stepping forward. Kody was described today as a little boy with man sized faith. God uses these babies in all kinds of ways to further his kingdom. He is still using Kody to do just that. Thank you Lord for your goodness amidst so much earthly pain.