Day in the life
In support of
Avery Majano
View Support Registry
Avery Majano
First, I want to thank everyone for the abundance of support. We are so grateful and appreciative of each and every one of you.
I wanted to share a typical day for us and I say that lightly because it changes often . The only constant in our life is change! Today, we woke up around 7. I have to give Avery several meds. Then I give her a feeding bag of milk. After that, I burp her and change her feeding tube extension and clean it out. Today, we had feeding therapy. I have a nurse who helps me take Avery to appointments which is very helpful. We load the car with a special feeding chair for therapy. Avery is eating more and more and is curious and motivated by food. This isn’t always the case for kids with cp so this is a HUGE win. She takes a couple ounces by mouth and we have been in a marathon of working up her intake. She works with multiple tools to help her with this. We love her speech therapist and we have learned so much. After this appointment which is 45 mins. We drive home (30 min. drive each way). When we get home she naps and we administer more meds and she eats from her feeding bag. After this we take a walk outside and get ready for physical therapy which is at the house. After therapy she will eat again by mouth and the rest by her feeding bag. She will nap again, bath time, more meds, and get ready for bed. Not to mention throughout all of that I am constantly stretching her, working on her vision needs, doing physical therapy exercises with her, reading to her, and trying to take care of household items. It’s a full time job and then some.
Tomorrow she gets her button changed and she has OT. Another full day!!
Today, we had some great news and scheduled the date for her stem cell. We are so excited and thrilled.
I shall be back again to share more updates!
Thank you all!!! #teamavery
I wanted to share a typical day for us and I say that lightly because it changes often . The only constant in our life is change! Today, we woke up around 7. I have to give Avery several meds. Then I give her a feeding bag of milk. After that, I burp her and change her feeding tube extension and clean it out. Today, we had feeding therapy. I have a nurse who helps me take Avery to appointments which is very helpful. We load the car with a special feeding chair for therapy. Avery is eating more and more and is curious and motivated by food. This isn’t always the case for kids with cp so this is a HUGE win. She takes a couple ounces by mouth and we have been in a marathon of working up her intake. She works with multiple tools to help her with this. We love her speech therapist and we have learned so much. After this appointment which is 45 mins. We drive home (30 min. drive each way). When we get home she naps and we administer more meds and she eats from her feeding bag. After this we take a walk outside and get ready for physical therapy which is at the house. After therapy she will eat again by mouth and the rest by her feeding bag. She will nap again, bath time, more meds, and get ready for bed. Not to mention throughout all of that I am constantly stretching her, working on her vision needs, doing physical therapy exercises with her, reading to her, and trying to take care of household items. It’s a full time job and then some.
Tomorrow she gets her button changed and she has OT. Another full day!!
Today, we had some great news and scheduled the date for her stem cell. We are so excited and thrilled.
I shall be back again to share more updates!
Thank you all!!! #teamavery
Comments
Wendy Chavez