16 Month Update


A new calendar year and a new address!

It's been a while since we last updated and I hope this might be our last of the Updates, here anyway. Ben underwent his surgical procedures as mentioned in the last post on 12/16. Typical Children's fashion we were all taken care of. I was able to roll into the OR and hold Ben as they put him under anesthesia and both Matt and I were there when he woke up. He tolerated the anesthesia/intubation much better than anticipated given his heart/lung history which was a relief. It was an emotional day but like always Ben was resilient and strong. He had the eye muscle correction to both eyes. It was pretty sad he cried bloody tears for a few days and absolutely hated the eye drops but did well. After a month of bloodshot eyes, they are finally his beautiful blue eyes. There is still some residual crossing of one eye and we still patch daily. He had ear tubes placed and gained up to 20% hearing. That was quite the adjustment over the holiday season as he could suddenly hear the full volume of everything. We'll recheck his hearing soon and we've had no ear infections since the tubes. And lastly, an EGD scope of his throat which didn't show any reasoning for his feeding delays so its likely low muscle tone and maybe some sensory adjusting. He's eating a lot better though as of late, tolerating more table foods.

In October, Ben, Matt, and I all gave blood samples for Genetics workup. It takes weeks to months to process genetics tests. Well, his doctor called and he was found to have a variant on the Plod3 line which may be responsible for his heart defect. This warrants further workup with an expensive test called the WES we are awaiting insurance approval for. It will be helpful to know for Ben's future and prognosis and also ours if we were to have more children, God willing. He'll have another heart ultrasound this month and pray his aorta dilation is stable. If not, he'll need to start a cardiac medication so hopefully it's a good scan. We are also seeing the Developmental Medicine team at his Neurologist's recommendation to assess what they call "developmental delays" and what may or may not be in his future. It's a whole day evaluation at the hospital with both of us there. I'm bracing for it and hope its ultimately helpful.

Also in the meantime, as if holidays and a surgery weren't busy as is, we bought our first home!!! We are so excited. We moved 3 weeks ago to Windham, NH. Everyone is loving the added space and yard and garage, oh my! I transferred all of Ben's Early Intervention services from MA to NH. Last week we met our new physical therapist. She will come weekly, in addition to we

ekly speech therapy, and a group therapy of other kiddos who are in the same skill set of "Pull to Stand- Learning to Cruise" We discussed goals and what it will take to get Ben to continue progressing to walking. Not only developing his gross motor skills, but fine motor, communication, and feeding too. I'm excited and hopeful. The service seems well organized. We also hope to explore Windham's library and local mom/kiddo playgroups and make some friends. This summer, June 12th, Ben, Matt and I will be participating in Children's Hospital annual walk on the Esplanade. We hope to fundraise a bit of help for the place that's followed Ben since birth and will continue through childhood. Our Team page is here if you'd like to learn more: http://fundraise.childrenshospital.org/site/TR/Walk/Walk?team_id=5582&pg=team&fr_id=1430