Home Sweet Home!

So Friday night Sam and I returned home. She was literally smiling and squealing in the car with Kaeden as we drove home. Everyday for the past month, at least once per day, she would point to the door and ask "car?" It was great to finally be able to say "yes!" Walking out of that room was a wave of emotion but my anxiety started to ease seeing Sam smile ear to ear.

 Overall she had a pretty good first weekend back at home. She is still vomiting frequently and having some pain with diaper changes but overall, she really seemed happy!  It is even more obvious though the physical changes she has undergone now that she is back in a familiar environment for visual comparison. She just looks so different. She has lost five pounds since her diagnosis which for a little nugget is almost 20% of her total weight. A lot of this loss was muscle and even though she is walking now, she is very weak still and is a lot more unstable. Her balance and coordination are greatly decreased and Kaeden says she looks like a "little old lady" now hobbling around and having to steady herself to bend over etc. I hope with time this strength comes back on its own with everyday physical activity and we can avoid spending more time at the hospital for physical therapy.

Today, we are at "clinic" where she is receiving a platelet transfusion. Her doc doesn't like that her platelets and ANC are down from Friday and so drew more blood work checking for viral infections. She has a rash on her cheek and back of her head but they don't think it looks like graft vs. host disease and are leaning towards a viral cause.

Some people have asked including Kaeden now that we're home is it "all done?" I wish I could say yes but the answer really is not yet. We will come to clinic three times per week for continued monitoring and transfusions two to three times per week. These are long days (4 to 6 hours) and in some ways tougher than inpatient days. Graft vs host disease can really crop up at any time but an average time is day + 30. Also graft rejection can unfortunately still take place but this chance drops greatly at day +100 so that is our next goal.

She can not go in public (grocery store/ target/ park/restaurants)  but we can take her on walks in non crowded areas if she stays in the buggy. If she gets a fever, we still have to head to the er and she still has dietary restrictions to limit possible bacteria exposure as well. She can walk in the grass with shoes but can't touch it. She also can't play or touch sand or dirt. So most of our time will still be spent solo at home with limited visitors but again, home is much better than 30 days in the same hospital room!!! Most of these restrictions are lifted based on her progress and ability to come off specific meds which we've been given a 6 to 12 month window. We're obviously hoping for the six month mark!  The house was steam cleaned, evaluated for mold, and a uv filtration system was installed while air ducts cleaned. Kaeden will wash hands, shower, and change clothes every day as much as possible  before seeing Sam but sometimes this gets tricky.

Now that we're home, blogging has actually gotten tougher but I will try to keep up as much as I can. I can't say enough about how helpful the extra meals have been now that I'm able to experience it first hand at home.  Not having to plan meals, get groceries, and make meals, on these long days at the hospital makes all the extra things she needs for her care, possible. Despite her physical weakness, SAMs spirit is strong again and as she spends more time at home with Kaeden, daddy, and baba, we know her laughter and giggles will give us enough strength to keep on chuggin! We have started our thank you notes and I'm humbled to say the stack is quite tall, but we will get to them one by one as so many people near and far continue to reach out in the kindest ways.

Here's a pic of Sam at home and I'm hoping to see if I can also post a video of a great "giggle fest" with her brother! :) Music to our ears!