A huge thank you to Dad and Jeannie (Kris’ side in Utah). Well there are many thank yous to them.
First, collecting cards from all the schools and kids out there in St. George. Haven loves them and actually has a couple constant pen pals. Eva calls her Princess Haven Chan and writes her almost weekly and Shaylee sends Haven notes and tells her to call any time of the day or night.
Second, sending the video that all the kids made at the school to Haven. Absolutely awesome.
Third, such a major help!
Dad and Jeannie have been working with Social Services and Child Life Services at JH for the past couple of months. They (G&G Utah) are helping us out with getting in-home help. This is great for Haven and great for Kris. Kris interviewed with them today and has a very nice woman coming to see Haven every Wednesday and Thursday for about 4 hours a day. I will never see her so I left everything up to Kris and if he felt comfortable with her. He said she is about mid-30’s and Haven and Shannon got along great. Haven will be the youngest child that Shannon has worked with but I’m so happy Haven will have someone to visit her weekly. Kris has not been able to work during the day with Haven at home, unless someone comes out to stay with us. He usually waits until I get home and then starts his day and works until 2 or 3 am. Then he’s back up when I leave for work at 6:30 am to be with Haven.
Again thank you Dad and Jeannie – this is really going to help with the stress at home and me having to hear these two whine all the time! :) Love ya
Learning sustainability for our family and taking care of kids. Becoming a chicken mom in 2020! Our oldest- Haven, 17, was diagnosed with Neuroblastoma Cancer and ROHHAD Syndrome at age 3. We continue to battle these today.
Subscribe to:
Post Comments (Atom)
ROHHAD in Ireland
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
-
Hi everyone. It's been a long time since I sat and wrote about our daughter's extremely rare disease diagnosis. Literally 15 years a...
-
I received this story in my email today. It still shocks me that my daughter has ROHHAD. It's a horrible disease that destroys a child&...
No comments:
Post a Comment