Updates

A few Sadie updates- 

Our hope is that in a couple-few weeks that Sadie and I will be transitioning back home for a small period. Sadie's clinic visits will move to bi weekly and we can make the trip back for clinic days as they hopefully get spaced out even further. As we prepare for that transition there are a couple of updates.

Sadie's mail address is 
Sadie Long
P.O. Box 1012
Santa Rosa Beach Fl 32459

Sadie has loved every single card and note and encouraging gift. I can not say thank you enough to everyone that writes to her or thinks of her or provides an activity for her. You all have filled her days with bright spots and given her something to hold on to thats not just a hospital room and the entire transplant process. She has discovered her love of flowers and paper and fabric flowers. She filled both floors in the hospital with flowers. She's learned a lot of science principles and now knows how to weave on a small loom. She's learned to sew and has created her first four small pillows. She takes pride in these activities and shows them off to everyone. Lately it's been incredible to watch her get back into play- she's started to play with dolls and dress up and different more physical activities that has her moving up and down. 

Thank you. Thank you all so incredibly much.

As for how Sadie is doing: the short answer is good. Her endurance builds every day and she continues to do things she couldn't pre transplant. She walks a little further every day- until she reaches a day that she just wants to rest a little more. Her vital signs are all in a good range. On Monday she will receive her heart monitor as well so EP can keep an eye on her rhythm and her rate while she sleeps. She's on an abundance of medication but she's managing to take them in a better routine. The rough spot for Sadie is still very much her anxiety and fear about having lab work done. I pray that she finds peace with the blood work and that each time leaves her a little more confident. It's not fun, but its a small price to pay for a healthy life ahead. Currently her team is working on getting her medication doses worked out to create an even level, get her cut back and off of her caffeine intake and her diuretic. They're also keeping an eye on blood cell counts- currently it shows an elevation of inflammation, but there's a variety of reasons that could be- we wait and monitor it at the next blood drawl to see what her levels do. That's a lot of life right now- wait and see what happens- monitor- take vital signs- compare it to the next set and so on. Sadie's bandages have started to come off as well. She's healed enough to no longer need the daily dressings- which has caused her to notice her scars a lot more. She's not quite sure how she feels about them yet, I think they mostly scare her a little- she doesn't like when the material of clothing touches them- but she's adjusting. Today she's not said a single thing about them bothering her- it brings my heart up to watch her find peace with this. 

I still hold my breath a little each time we make progress- slow and steady we go.

As we move forward I am continually asked what we need. I'm humbled by this question constantly because I know it's God showing up for us- and it brings me to my knees in gratitude. 

Sadie will not be returning to public school. We've decided her immune system- or lack of it- would not do well in that environment- I will begin homeschooling her- I'll use The Good and The Beautiful as our base curriculum, but I am open to suggestions- and welcome any and all educational material. 

The more timely need is this- The next couple of weeks will be spent out of the hospital and out of pocket in terms of food for Sadie and myself. It can get expensive rather quickly. I've been reminded recently that I need to accept help, and I am so incredibly thankful for the help given thus far. It's because of all of you that I'm not thousands of dollars in debt, that I've been able to stay beside Sadie through all of this, that Harper hasn't felt the impact- that both of the girls have been blessed in abundance. Thank you. As we move forward I look at practicality and know that a few more weeks of being away from home- of not being able to work- of feeding ourselves via restaurants is going to be a big financial hurdle, so I ask for any help you may be able to provide. 

I'm also starting to figure out what our new life will look like. While I know that homeschooling Sadie is a must, I find myself looking for a way to bring in an income as well. If anyone knows of a work from home position please reach out to me. As Sadie grows stronger she wont require me to be at her side every moment, and while we will forever have to be cautious of infection and rejection, we did this so she could live- and we want her to live a full life. I'd like to be able to support that life for her- so if anyone knows of an at home position that can start in about an month please let me know. My e-mail address is: [email protected] 

Will has also stepped up immensely with all of this, as we look at coming back home and being a family again- Will is jonesing to get back to the airport. If anyone has any connections to airport jobs he would love to talk to you. 

Thank you for your support, thank you for your prayers, thank you for walking this journey with us. We have a long road ahead- we're still looking at relocating closer to Gainesville in the future- for right now we're focused on getting our family back together, getting a stable life under us and seeing what plans God has in store for us.