I love it when I start thinking how tired I am, how sick of driving back and forth I am, how much I want to go home, how I don't want to play nurse and pharmacist anymore, how I just want my want my brain to turn off and stop worrying for a second, how I just don't really want to do this anymore.......and then we go to clinic and get great news-actually the best news so far!!! Yesterday they told us that, if things keep looking as good as they have lately, we can possibly move back home the 1st of October! Yep, that's right, only 3 more weeks!!!! I know they told me not to tell anyone yet, just in case, but I couldn't help it....I had to tell!
Abby's biopsy last week was 100% again. On September 18th, she goes to her last taper for her predisone, so hopefully that means no more puffy cheeks. They want to watch her for a couple of weeks after that and make sure she still is okay. We are finally down to having clinic only one day/week now too! We don't have to go back until next Monday-5 days away from PCMC is the longest we've gone since May 18th.
One thing that makes me real nervous is that we scheduled her exercise test for next Tuesday. The thought of her running again stresses me out. They should probably hook me up for an ekg at the same time they hook her up!! It will be interesting, but scary to see how her new heart responds to the stress of exercise. Abby is so excited for this, she's been waiting for a long time, she just wants to run again!! Then we'll really be able to start training for the Doman Dash 5K we'll be having for Abby next May. That means it's time for many of you to start training too. If a 12-year-old kid can run 3 miles only 10 months after having a heart transplant, we all should be able. I have a lot of work to do too, I've never been so out of shape!! It gives us something to work for, we now have a goal, put it on your calendar and get ready with us.
Britt is doing well. She's pretty sore, but recovering. She's spending the week with us because she can't go back to school until Friday and she has a follow up appointment on Thursday, She also has two days of therapy up here this week too. We love having her here with us, it makes us all happier. Britt and Abby have a lot of fun together, there's lots of laughing, she needs her big sister around. We miss Brock a ton when we're here, we all just need to be together all the time again, I can't wait.
One thing I've noticed the past 4 months is that everytime I've reached my limit, everytime I've felt like I'm only hanging on by a thread, something good happens. I'm quite certain that I'm being watched over and that I won't ever be given more than I can handle. What a reassuring feeling this is, I hope I can remember this as we continue to go through ups and downs. When you're a heart mom, things are never "easy", there will always be worries and setbacks, but I know that we can make it through them. When I look back at what we've been through as a family this past year, I know that this next year has to be easier, and I know that I won't be given too much.
You are an amazing mom! I love following your blog, it inspires me every day! Thank you for always sharing. It even makes me want to start running...hmm...keep inspiring us all!
ReplyDeleteOne step at a time... and you are getting there!
ReplyDeleteI love reading your posts. You and your family have been through so much, and yet you still have a strong positive outlook, which is inspirational.
Good luck with these last 3 weeks! I will keep my prayers for your family.
Erinn