After learning about the new team taking over the home vent program that Ryan would be apart of, we asked to have him transferred. This week mom and I heard that the doctors at Children's Hospital Los Angeles have accepted Ryan to become a patient at their hospital. In order for Ryan to be enrolled in the home vent program that CHLA offers, he has to be a patient of theirs first. The only problem is that the unit that he would go to is full. So as soon as they have a bed available, Ryan should be moving. Who know when that will be.
Ryan passed his swallow study on 7/30 and since then we have been trying different liquids and baby food to try and teach him how to eat orally. Every time we would bring a bottle or spoon to his mouth, he would try and swat our hands out of the way and would make faces and whine. We know it will be a long process to to get him to take and enjoy food. Yesterday, Mom thought it was a good idea to try to feed him rice cereal. Her thinking was that the sweetness or flavors we were giving him might have been a lot more stimulation than he could handle. The rice cereal was bland enough and he seemed to really enjoy it. There was no swatting, faces or whining. He still hasn't grasped the concept of anticipating the next bite, so we have to sneak the spoon in when we get the chance. In between all of the small rice cereal bites we added a small amount of carrot baby food. He didn't seen to notice, but we thought it was fun.This week was semi uneventful, but I guess that is a good thing when a hospital is involved. When Ryan gets transferred to CHLA we should have more details and new things to talk about.
Today rice cereal and carrots, tomorrow filet mignon! Way to go Ryan. You are part of a family that loves to eat after all :-)
ReplyDeleteThank you, Hope and Joey for the report on Ryan. We look forward to your notes and the pictures. Sounds like things are moving along. Good he is starting to eat. We check every Monday to see how the three of you are doing. Lots of love to the three of you,.
ReplyDeleteGrandma T, Aunt Patty, Uncle Mikey. I am at their house till next month.
We will keep in touch
Ryan..
ReplyDeleteKiddo you dont know what your missing... ;) I must admit I can see you doing the swatting and faces & i cant help but SMILE!! this is all part of being a baby:)I hope you like the rice cereal. Keep on Keepin on!
Love,Love,Love Auntie Val
C'mon Ryan, your mom sold ribs for several years. Once you learn to chew, I will bring you a big plate of baby backs with carolina honey. Love ya
ReplyDeleteAri <3
Glad to hear about Ryan being able to eat. He is such a sweetie. Hope he will get to the new hospital soon. Needed help from Dani and how to post this comment. Linda Linehan
ReplyDeleteHi guys, so good to see baby Ryan doing well! CHLA is where we were trained to take Moriah home on a ventilator. Congrats on discharge home. Please let us know if you have any questions!
ReplyDelete-Victoria and Justin Nelson