So we are in the car driving home from a week at Hilton Head. It really as the perfect time. Elan did so well! He had so much fun in the waves and sand. We rode bikes daily and he of course was all smiles. Mom and Dad plus Seth and Jenny, Delia and Caleb all came. We rented an awesome house 1 block from the beach. It was in the Sea Pines area so quite and family oriented.
Finn had "superman" ice cream at Salty Dog Cafe in South Beach He said he wanted "batman" which they made instead :). We went a few nights for drinks there with Seth and Jenny after kids asleep - nice. Just hung out and didn't leave Sea Pines. We will do it again this summer for sure just the 4 of us.
One day we ran into a special ed teacher and 2 girls she watch who are twins. The one has Autism and Cystic Fibrosis so special needs. The teacher named Amanda said she actually knew someone with an AT/RT baby several years ago. How amazing is that?
We also had a crazy thing happen. Erik and I went to Publix when the boys were sleeping one of the first days and ran into the PA who was in the ER the night we took Elan in. It was an amazing experience. Her mother was with her who had breast cancer and is a 6 year survivor. The mother said she had been praying for us since she heard about us after her daughter's shift. The PA said she had been praying and thinking about us a lot. The ER had been following Elan and all are impressed with how we kept our integrity about not wanting to transfuse blood for Elan. She was quite happy that we had a good feeling and experience. She was actually surprised that we found everyone to bee accommodating.
It was really nice to have so many strangers around Elan again. He is back to himself in so many ways and doesn't look sickly anymore. Many said "what a cute baby" in passing - not to me but to each other. SO great to hear that again. There was one little boy at Salty Dog Cafe that pointed at Elan to his mother but didn't really bother me. He has plump legs and makes happy noises. His newest thing is humming the Thomas song. So adorable! His vocalization is getting louder too! He is waking up happy too!
His wet diapers are so strong from the vitamins - so funny! Speaking of bodily funtions... Finn had BLUE poop from the food coloring in the ice cream at Salty Dog the day before! Good thing our kids don't eat stuff like that regularly! I know the AT/RT has nothing to do with how we feed our kids but it does upset me that we have been so careful about their environment and food that we end up getting the short straw with the cancer where so many parents feed their kids a diet of McDonalds regularly! Sucks!
I did look most nights online about AT/RT. Found several long term survivors - all had some form of chemo and radiation. I am getting a bit of hope from it. The fact Elan had a no additional growth means we are doing at least something right! We still haven't heard about the Proton Beam. Erik's phone got wet a few days back so he hasn't had cell access. I was able to get it to work for a minute but then it went off again - hopeful we can get it to work though!
Other good things about the trip:
- seeing dolphins all the time. Literally 10 ft from shore. Super amazing moment!
- walking up the lighthouse. Just a nice time with all of us happy. We took Delia up too.
- seeing Finn and Delia have relationship - boy was it a love hate thing. Finn was so mean to her! Really trying to "get her goat".
- taking family pictures. Just nice to have the whole family looking nice. I really like having all look nice! Makes me feel more in control.
Speaking of control - boy to I feel FAT! I have had alcohol every night since we have been out of the hospital. This week tons of BEER - so bad! Tons of carbs etc. We are starting on a full on veganish diet starting Sunday. Tonight we are headed to Red Hot CHili Peppers... we bought tickets before all of this. Having Kenya watch the boys since mom and dad headed to DBQ to pack today. They will be gone a week to get their stuff.
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