For the Love of Jo

She is up and at 'em! Surgery went well and she is recovering nicely. Once she got into surgery, the doctors agreed that she was actually too small for a Broviac Catheter and instead they went with something called a Power line, which sounds way cooler in our opinion. It was hard to send her back to the OR but we were confident she was in very capable hands. We will be admitted to the hospital tonight for observation. Then the real fun starts tomorrow when we have our first Enzyme Replacement Therapy (ERT).

As a parent, I feel like this is the first day of a new chapter. "Normal" parents of an almost 8 month old are celebrating the first crawl, belly laughs and maybe even the beginnings of first words, but I feel like we are starting all over again. I am strangely excited to start this new normal of central lines, bi-weekly treatments, physical therapy, swallow studies, and I am sure much more. I am excited because now we can provide the best for our baby to make sure she can grow into her potential. Before, we were just going through the motions and hoping and praying that maybe JoJo would roll over or really let out a hearty laugh, but that's because we didn't know that she was struggling to LIVE and that Pompe was really behind her shortcomings. 

I am sure JoJo will be uncomfortable after this surgery and she might not like having treatments, but in time, I think she will love her new life. I hope she is able to gain the motor skills that will empower her to play with the toys she loves and will help her finally start being able to scoot around. She so badly wants to do "normal" baby things. She just needs some special JoJo juice to get her going. 

Thank you for your unfailing love and support!!

Segura Family 

(Jo after surgery... Loving the pain killers!)