I haven’t fallen off the face of the earth. I’m still here! I took a little break from blogging to just enjoy life and my little family. After Eli’s most recent diagnosis, some pretty raw emotions took over. Disappointment, sadness, disbelief. I didn’t want to burden this blog and my “readers”. I needed some time to decompress. I took a wonderful vacation to California with my mom and the boys. Just the four of us road tripping. It was a good time! Eli met lots of family that he hadn’t met before. I think it’s safe to say they all fell in love with him (who doesn’t?). I’ll post some adorably cute pics of that trip, 4th of July, and other summer stuff soon!
Today we had a meeting with the craniofacial team at Children’s. We are very confident Eli will be in the best hands for his craniosynostosis surgery. The official name of the surgery is Cranial Vault Reconstruction (CVR). Warning: A somewhat graphic description to follow
They will cut his skull in a zig zag pattern from ear to ear (so when the hair grows back the scar becomes less noticeable). The skull bone is then cut to release the fused suture. The back of his skull (where the lambdoid suture is) will be removed and the plastic surgeon will re-shape that piece making his head round (it is currently a rhombus shape). The skull will then be stabilized with dissolvable plates and screws.The neurosurgeon will assist and make sure the cuts near the brain are done safely and that the dura (protectant layer of the brain) stays intact.
Jokingly I think of Eli to be a little like Humpty Dumpty – except he will be put back together again. Seriously though, we’re having a tough time knowing this surgery is imminent. People say to us all the time, This should be nothing compared to heart surgery – actually, to us it feels worse. He was a very sick child when he went in for his heart repair. We were looking forward to having a healthy infant who was ready to thrive. Now, Eli is a happy baby who plays and engages with us. He shows no outward signs of discomfort. He is developmentally on track (mostly). But, if he doesn’t have the surgery all of that will change.
The surgery scheduler should call with the surgery date by the end of the week. It most likely won’t be until September or October. Please God, I do not want to celebrate his 1st birthday in the hospital. He deserves better than that.
So now we wait. In the meantime, he keeps on loving and laughing and living life to the fullest. I wish the same for all of you.