Living On the Edge

Hope has had a turbulent August and we can’t tell you how glad we are to turn over a new leaf and see fall come, and not for the PSLs you lunatics (that’s Pumpkin Spice Lattes for the unfamiliar). She’s never really gotten back to 100% after her Hand, Food & Mouth encounter – just stuck on the edge between sick and well. She’s getting two molars and has been less than thrilled with this new development. Her reflux is in an all-time high, making it hard to do anything when she’s in an angry, fussy, pukey mood. Let’s just say our off-white rug has truly paid the price for the switch from infant formula (off-white colored puke) to whole food formula (soylent green colored puke). We thought cleaning it would solve it, but alas, it is truly a lost cause. Amidst all of this, Hope has been growing like a weed! She has taken after her dad and is long and skinny, with just enough chunk in the cheeks to give her a little dimple. She continues to work on tummy time and eating finger food (although she spits most of it out) and we don’t have any big breakthroughs to report.

We are excited for our clinic appointment this week because we begin the downhill side of this medication journey. After one year we get to stop Valcyte (which she takes to mitigate risk from cytomegalovirus), propranolol, and eventually amiodarone! We start the weaning process for propranolol next week and each drug will follow as long as Hope responds well.  Three fewer drugs is sounding pretty good to us.

Roughly two weeks from now the Pediatric Congenital Heart Association of Ohio has a walk to Conquer CHD in Eden Park. We’d like to extend an invite to all to join Team Hope for the walk and raise money for a very worthy cause. This is the group that delivered one of our very first care packages and continuous support throughout Hope’s hospitalization and is very near and dear to our heart.

If you’d like to join us that day you can register as a part of team Heaven Sent Hope here. If you can’t make it and would like to donate, you can use the same link.

We have lots of exciting news coming in the next few months – we can officially connect with her donor family (only if they are open to connecting – it has to be mutual and go through a third party at first), celebrate her one year transplant heart-anniversary, and lastly there is the question of whatever will she be for Halloween and of course – we’re currently taking suggestions as it’ll be hard to beat the Wizard of Oz theme from last year.

It’s our wish that the photos below warm your heart as much as they warm ours with life and love – enjoy!