Evan's HLHS Update

I know, this update is well overdue. Since Evan has been so stable for the past few years, this blog has slowly died. I'm going to attempt to revive it by not focusing so much on the HLHS portion of our lives, but more on our every day adventures - like homeschooling, therapies for Evan's special needs, Disney tips from a seasoned passholder, DIY projects, successful pinterest crap, etc. But before I move on, I feel I need to bring this page up to speed on Evan and his HLHS journey since so many newly-diagnosed HLHS families still make their way to our page!

On May 21, we celebrated TWO years post-Fontan for Evan! And we are quickly approaching one year since his last heart cath! I can't believe how far we have come on this journey, yet it is daunting to see how much farther we have to go! We all thought Evan was doing pretty well developmentally, especially after seeing how much he had learned over the past two years. But when we were given the opportunity to see a Developmental Pediatrician at our cardiac center, we jumped on it. I didn't really know what to expect going into the appointment. I thought we would answer a few questions, Evan would be asked to complete a few tasks, and we would be on our way with a "here is where your child stands" letter. Yeah, no. Didn't happen that way. It was a super long, very intense appointment that covered all aspects of Evan's development and skills from birth til now. My kid is four and a half and has a detailed history - you can only imagine how much info we covered. The DR and his nurse practitioner did such a great job staying patient with my rowdy boy and I could tell they were trying to be respectful of our time while also gathering all of the information they needed. I filled out several questionnaires prior to the appointment and filled out another in the office. The DR and I reviewed all of that information and then he examined Evan physically as well as tested his skills. My boy has just recently begun to like clinicians again so he was a little unsure of them but overall did well. We definitely knew going into the appointment that Evan was still delayed in some areas but we were not prepared to find out just how delayed he is. We left the appointment with referrals to Speech therapy, Occupational therapy, Physical therapy, and a hearing evaluation. Phew. Then the detailed report came in the mail and it saddened me to see just how much harder Evan was going to have to work to catch up. It is definitely not fair to have to undergo so much in your life at a young age and then when all of the "hard" stuff is supposed to be over, you get smacked in the face with the reality of its never really over. There is always more to be done..

Evan has now had all of his evaluations for therapies completed and each specialist determined he would need their therapy 2x per week. That is six, 45 minute appointments every week. We ended up settling on five appointments each week based on what we felt we could handle in our schedule and how expensive our copays are for each appointment. You can only imagine how crazy our calendar looks with all of these appointments in addition to normal weekly activities! Evan has been going to his therapies for 2 weeks now and he is definitely still adjusting. He has some major anxiety issues and is easily frustrated when he can't complete a task or finds the task hard.. We've had our share of meltdowns these past few weeks but I am confident he will begin to trust his therapists and start to have more productive sessions.

If your center offers a neurodevelopment appointment to you for your child, take it. Even if you think your child is on target developmentally, just go. Having a new set of eyes specially trained in development and delays for cardiac kids is essential to not only helping your child to get the services they may need, but also key to helping them remain on target! I only wish we had something like this offered to us when Evan was still a baby. I can only assume his development status would be much different now.

Other than working on delays, Evan has been pretty status quo! He had a routine cardiology visit in June and everything checked out great. He is growing well and gaining weight appropriately. His heart function still looks amazing and his sats were in the high 90's. And, he made it through the appointment with minimal tears! I, on the other hand, did not have a pleasant visit. Our beloved cardiologist, the first person to give us hope that our baby could survive this diagnosis, announced she was leaving the practice this summer. I was shocked and devastated! We have always joked that we would follow her across the country if she ever moved and all of a sudden it wasn't so funny anymore. After days and days of discussion, we decided to switch to another cardiologist at All Children's. While we know she can never be replaced, and we could have followed her to her new clinic, we just didn't feel comfortable not knowing any of the other cardiologists at her new center. SO SAD! Seriously. It still makes me teary eyed to think after five years we are losing our favorite person but I know she will be loved at her new clinic by her new patients. I am just selfishly sad for my family.

This year, Evan will officially be joining his sister and I for (home)school! I know, it seems impossible that he is old enough to start school, yet here we are! He is very excited to have his own place at the table this year and can't wait to start learning! I'll share more on which curriculum we will be using in another post.

That is all for now, folks. We hope to have an uneventful second half of the year and just know our little guy is going to work super hard to catch up with his peers. :)