Hi Everyone! I took a long hiatus from huge swaths of the internet recently, when my pregnancy got worrisome and then later after having a child with a rare and complex genetic syndrome. I just came back in earnest for the first time in almost a year, and it’s nice to see you all!
How is your baby doing?
Pretty much the same from me; comment and question.
Thank you, and our baby is doing pretty well! He has something called CHARGE Syndrome, which is a collection of birth defects. He was also born with a cleft lip and palate. He sees several specialists and has many surgeries ahead of him, and has been hospitalized a handful of times in his 7.5 months of life. But he’s resilient and incredibly funny and cool. Has been blowing away the therapists with his progress. We think he’s gotten much stronger. I am very nervous about his palate repair surgery, but we have a few months till then.
I’ll keep the good vibes going and the fingers crossed. And hugs always your way.
My big brother had a cleft palate and they fixed it just fine almost 40 years ago. I’m sure these days it goes even smoother than back then.
Thanks, yes, we are hopeful. Kids like my son have a hard time with anesthesia, and intubation. His airway could be described as risky. His lip recovery was harder and longer than “typical” children face, so my expectation is that the palate will be even worse in terms of recovery. However, the repair will have lots of secondary health benefits so I am looking forward to it even as I dread it!