STILL DOING GREAT

We are almost at the three month mark and things are going very well.  Piper continues to put on weight and her behavior is…well, hilarious.  The prednisone definitely brings out “our little devil” and it’s not always pretty.  She loves doing exactly what she’s not supposed to do, but she’s back to being in charge of the twin hierarchy after ceding power to Harper for about a half a year.  Harper seems fine with the chain of command as she is definitely more laid back than Piper.

Piper still has her appointments at A.I. several days a week and we continue to get good blood test results.  I find it to be incredibly stressful just thinking about getting bad blood test results, but Erin is really comfortable with it, so she handles most of these appointments.  Piper’s nanny, Autumn, is also starting to take over responsibility for these appointments and we’re grateful for that.  As much as we love Autumn, it will be nice to get Piper back into daycare at EEC in a few weeks as my bank account needs a break and Piper needs to get back to being around other kids.

I would say that I’m back to about 95% and feeling really good.  I only have some occasional incision site tenderness, but I feel like I’m out of the woods regarding potential hernia.  I now pick up all the kids…even Sophia…whenever I want.  They and I are very happy about that!  I might even begin to exercise again in the next few weeks so I look a little more presentable in a bathing suit when we go on our long awaited, delayed vacation to Jamaica.  We absolutely cannot wait to get there and soak in the sun while drinking Red Stripe beer and Appletons Rum!

I can’t believe we’ve come so far in the past year.  From three healthy children, to a sick child, to a really sick child, to kidney failure, to potential cancer, to kidney removal, to kidney donation, to almost complete recovery.  It’s really amazing and we are so, so lucky to have received the care and attention we’ve received.  God…if you’re reading this, and I’m sure you are, thank you for blessing us with our wonderful children and for allowing us to get Piper the successful treatment she has received.

I’m also amazed at how much better I feel mentally these days compared to how I felt when Piper was sick.  It’s hard to believe how much of a toll the stress of Piper’s illness took on my attitude and outlook, and I wondered if I’d ever get back to normal.  I’m happy to say that I definitely feel back to my old self, but certainly feel a little bit of the negativity and stress creep in every time something doesn’t go perfectly with Piper.  Luckily, Erin knows that and tries to shield me and my fragile emotions the best she can!  All I can say is that if you know someone who is dealing with a critically ill child, be the best friend you can be to them because I promise that’s what they need more than anything.  We’re so lucky to have so many people who understand that and have really stepped up for us.  Thank you to you all!!!

I have begun the process of formally creating our foundation as I have reserved the name “Piper’s Kidney Beans Foundation” with the Delaware Division of Corporations.  We’ve also added a second objective, which will be funding the creation of a genetic testing lab on the grounds of A.I. duPont Hospital.  We are going to attempt to partner with the lab we used in Bristol, UK to get them to establish a facility right here in Delaware and it’s something the doctors at A.I. are really enthusiastic about.  Stay tuned because as soon as it’s up and running, I’m going to be actively soliciting donations from all of you!

Love – Chris and Erin

Please follow and like us: