Routine

About 2 weeks after our hospital stay, I think we are getting into a routine. Darren’s back at work full time and tonight he started back with his church activities. We spend a great deal of our time feeding Matthew (approx 7 hours a day) but we are finally doing other things as well, like going to the weekly fish fry at church, spending time with friends, running errands, doing laundry, etc. It does take us a while to get our act together to get out of the house, but we are starting to adjust to life with the newborn.

Since our last update, Matthew had an evaluation with occupational therapy. We worked on his eating (pokey), wrists (he holds them at an unnatural position), and hearing directionality (to adjust to his hearing loss on his left side). The occupational therapist was pleased with many of his other developmental milestones… he keeps his hands at midline, he puts his hands to his mouth, on his tummy he lifts his head and moves it back and forth. We will continue w/OT most likely weekly and we hope to improve on those things that are a challenge for him and celebrate those that come easier as well as those that he works on.

As we heard from the geneticist and also from some of our friends who have children with various uniquenesses, we know that early intervention is imperative. We are intending to utilize private services (OT, PT, Speech, etc) maxing out our insurance, and then we’ll use the Early Childhood Intervention services to finish off the year. Today we had our first meeting w/ECI and have scheduled our evaluation w/them next week. They will put together a plan for us and track his progress (both private and ECI related). I continue to be thankful (as thankful as I can be) that Matthew was born without thumbs, which although may be challenging, it was the key to getting him diagnosed and to connecting us w/early intervention. I’m glad we have a jump start.

We are a bit overwhelmed by the number of Matthew’s appointments {the pediatrician, nephrology (renal), audiology (hearing tests), ENT, genetics, cardiology, urology, hand surgery, in addition to the early intervention appointments with occupational therapy, physical therapy, nutrition, etc}, but are grateful for our very smart and supportive medical team!

I can’t believe it has been 3 weeks since our admission to TCH and our darkest night. The support, prayers and love for Matthew and our family brought us to the light. We will forever be thankful!!