September

We're home from Sadie's clinic visit! 

The girls and I took a quick trip to Gainesville for Sadie's two week clinic visit- and the smiles are still big. 

Sadie did her blood work so much easier than before, she still had some feelings about it but she has come so far from the start of this. Her echo looked good, her EKG looked good, her blood work looked good- she is slightly low on some of her electrolytes still, but slightly low and in range is much better than too low and out of range. Her team fitted her with another heart monitor so they can see her overnight and watch her rhythm now that her pre transplant medication is out of her system and the caffeine post transplant should also have been flushed- they will get a good look at what her heart is doing all on its own. 

The only hiccup the team is a little stumped on is that Sadie has developed a rash reaction to- well we're not entirely sure to what- it comes on when she's active, or when she's overly hot. Its a full body reaction so it's not assumed to be heat rash, but rather a histamine reaction- however it goes away rather quickly when she can cool down- no antihistamine required. Her team has said that the anti rejection medication is notorious for causing or bringing out skin issues- and Sadie already has a plethora of skin sensitivities so it is incredibly possible that the reaction is her skin's way of responding to stress/work/high heat and it's just more aggressive because of the hypersensitivity caused by the antirejection meds. The team is sending her to pediatric dermatology to get skin experts involved. We will see them at the end of the month at the next clinic visit. 

Sadie is also officially immune suppressed. The medication and the timeline for her healing has moved forward quickly and we're there. We spend a lot of time inside right now and at home learning together while we slide into off season in our area. Luckily she's very good at understanding the need to wash hands constantly and avoid crowds. She's been very good at listening to her body and learning her limits and stopping when she needs a break. Harper has fully entered the big sister mode with her when she's tired or breaks out in her rash and does an amazing job of helping her calm down or distracting her like only a sister could do. 

It's one step at at time and we will forever have to monitor- but I'm happy to report that so far so good- she's doing well in recovery.

Next steps: Have her monitor read and see those results. Return for clinic in two more weeks and see Derm about this rash and figure out it's cause. Mid October is her next Heart Cath to monitor for rejection- lots of praying.

A lot of people ask "How is she?" and I will give you the answer my sister said when she saw her: "If you didn't know, you'd never know" She runs around, she cooks, she writes, she dances, she plays, she takes care of her dog, she makes a mess of all her clothes picking out outfits, she leaves glitter everywhere- if you didn't know her story- you'd not guess from watching her. She's a walking miracle.