Celebrating 11 Months of Henry and Frankie!

Can our boys really be 11 months old already? Time is strange; it feels like it drags on and on when we think about our journey in the NICU and it feels lightening fast when we look at how far both boys have come with their health and development.

Henry had a visit with the Vascular Clinic yesterday to follow up on his hemihyperplasia. His skin biopsy results were inconclusive, which at least means he does not have the PIK3CA gene mutation. They suspect there is another gene that the testing did not look for in the biopsy that is causing the overgrowth. We will get some more imaging studies done to check organs for overgrowth, but other than that, there were no significant findings that inform our next steps. So, we’re back in the waiting game and will see how the overgrowth progresses over time. We suspect there may be some gait issues when he gets ready to walk. He is still working hard toward crawling. He’s rolling, turning/sundialing, and looks like the crawling will come any second. He wants to be mobile so badly and gets frustrated his body isn’t cooperating wit what he wants to do quite yet.

Frankie has been doing so wonderful in therapy. We’re so proud of his progress. He is so happy and smiley out on the mat playing with family and the many friends he’s made in the NICU.

He’s been so alert and engaged. We are continuing to slowly work our way back to home vent trials. I’m hoping we might be trying the home vent out again sometime next month or early April.

Thank you for your continued support. We’re excited for their 1st birthday coming up so soon! We have special permission from the hospital to allow Henry to visit Frankie bedside on their birthday AND do a smash cake!! Check back for birthday celebration pics!

Love,

The Youngs