Tessa has more freedom now, she can go pretty much anyplace outside (as long as there aren't a ton of people) and we try to go for walks, ride her bike or get to the park every day. She is still pretty weak, and feels pretty terrible a lot of the time. The number of medications she's on, the the after effects of the transplant, and the swelling from the steroids have left her muscles weak, her joints painful, and she frequently has tummy pain the wrings her ragged. But we do what we can. Building up her strength a little at a time. She is not allowed in any buildings but the hospital, and then she has to wear her mask. That means I have to sneak in grocery shopping or errands when someone is watching Tessa, though Noni and Katie have been wonderful about picking things up whenever they are out. Don't think I could pull this off without the support of our families. Dee Dee still comes and visits every Tuesday, and it's wonderful to see her relationship with Tessa grow stronger and stronger. We got a wonderful surprise visit from Katie, Sam and Elle on Saturday which delighted Tessa (she loves all her cousins so much!), and we went and watched their soccer scrimmage after breakfast. We've even got to hang out with cousin Dylan (between his crazy number of work shifts)! We are so blessed. My parents come like clockwork every Saturday. Their dependability throughout this makes me love them all the more, and their relationship with Tessa is so wonderful. A mutual joy. My sister came all the way up from LA and is staying the night. She is so great with Tessa, and it's wonderful that we've finally managed to work out a time when everyone is healthy so she could come! My brother, Matt, is going to fit in a visit on friday maybe, we always have so much fun with Uncle Mattie! As I write this I'm overwhelmed by how our family has raised us up and supported us throughout this time. You can't help but feel the love that has woven Tessa into the hearts or our community. This is perhaps one of the biggest gifts that has come to us as a part of this journey. Tessa has had an opportunity to forge some wonderful relationships that will remain important to her throughout her life. It has also given me opportunities to build and expand my own relationships with these same people. What grace.
As we drift through our days here, I feel much like the parent of a 9 month old in some ways. I have re-emerged into that phase where you feel like you are working your tail off, but when you look around you can't quite figure out what you've been doing. Tessa is very needy still, and that is something that will have to be worked with as the time goes by. She has started doing play therapy at the hospital once a week to see if that will help her deal with some of her fears, anxieties, or the structures that she sets that can seem quite rigid at times. She's actually doing remarkably well considering all she's been through, but we thought we'd give her every opportunity to deal with what she's going through in a healthy way.
Casey has been in SLO for the last week. He had to return to work full time, and on top of that is doing some major renovations on the house to get it ready for our re-entry (new plumbling, replacing a really nasty carpet in the playroom with some hardwood flooring, re-tiling the bathroom, putting in new bathtub and counters with the generous assistance of one of my favorite people, Corrin LePell. She and her husband Josh own a tile and marble complany and are helping us with this project, making it all quite easy on us. Love you guys!!!!
We miss Casey terribly, and facetime with him whenever we can. But Tessa misses her daddy and can't wait to see him this weekend! It will be nice to get a hug from my husband and be together as a family. Miss you honey!
We are really incredibly fortunate in so many ways, it is just this state of limbo that makes it hard. We have people we love all around us, we are able to live in one of the most beautiful areas in the state, there are lots of options for getting outside and playing, and we have a huge amount of support. And then there's Tessa's health. Yes, she generally feels kinda terrible, but her labs show us a picture that isn't seen so clearly just by being with her. Her hemoglobin and platelets are getting higher on their on and staying stronger. She has needed relatively few blood transfusions throughout this whole process. Her neutraphils (measure of immune system) is rocking and rolling at like 3500, really awesome. In addition to that her blood and morrow reflects that her system in now 100% donor, which means there is nothing left of her own system that is trying to reproduce cancerous cells. ALSO, her bone marrow aspiration came back showing very little to no bone fibrosis, and that there is remodling happening. We really couldn't have hoped for an outcome this good.
So, focus on the positive, and enjoy the (long) ride is what I'm working on. I miss all of my friends and family we don't see and can't wait to celebrate our return home with a big shindig!
This was the Wall of Love in the hospital where all the cards and drawings from our friends went.
Tessa's family portrait the day before being discharged
Discharge day was exciting and exhausting. Two minutes into the drive home Tessa passed out.
The smorgasboard of medications I have to give Tessa at least twice a day. It's a job all on it's own.
First outpatient clinic visit post discharge.
Playing with the new dollhouse from the amazing Boyd family and their girls, Tessa's honorary cousins Callie and Chloe!
The park behind Noni and Papa's house.
Sliding. By this point she is wiped out and only goes down at my urging.
Having her bike is great. Not too much stress on her joints, she can sit, and still get out and move.
Playing with Auntie Jenny!
Auntie Jenny looks like Hamley!
A beautiful walk in a cool new place. Tessa loves the comfort of her stroller.
The ladies!
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