Miss Haven on a lunch date with Dad. McD's oatmeal - 260 calories - 4 gms fat = perfect lunch!
This has been the week of no sleep. Haven has had a cough since Sunday.....it's pretty deep in the chest and then with the medicine recall by McNeil for children I lost everything in my cabinets. Since it was just a cough I figured it was just allergies and no worries.
Monday she took 3 naps after school - all around 1.5 hours each. Just couldn't stop sleeping. By the time I got home she was running a temp of 99.5 ----- so we prepared a bag in case we had to head in to the hospital. Dad ran to the store to find any meds not made by McNeil and found some Robitussin. We gave her a little and she went to bed around 7:30. By 10:30 she was wandering around the house in her zombie sleep walking mode. We kept taking her back to bed. I finally passed out but Dad stayed up all night with her and he finally went to bed at 6am. We were concerned a spike in temp could bring on a seizure....but it was just a night of sleep walking.
Tuesday night was perfect. She slept all night - I was in bed by 9pm.
Wednesday was more sleep walking and coughing. Even this morning at 7am she was sleep walking. I told Dad it might be a rough morning getting her awake for school. But some how she snapped out of it about 20 minutes later and was ready to get to school.
I don't know if anyone will ever be able to help us with the sleep walking but we're exhausted.
Tomorrow Haven has a Field Day at school. She will not be participating as she is unable to due to the port in her chest. But she will hang out with Dad all day at school and watch the events. Then Dad is staying for lunch and she will have her lunch at school with the other kids. He is going to meet the lunch room people as Miss Haven will start staying an extra 1/2 a day at school and eat lunch with her friends.
We can't have her stay full days yet because after lunch is nap time and the teachers and school is very concerned about her going in to a sleep walking mode during nap time and them not being able to bring her out. This is fine......I wouldn't want her to do that either.
Baby Stryder is coming to visit this weekend -- so we are super excited. :)
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&...
Hi, Miss Haven!
ReplyDeleteHope you enjoy watching the field day events tomorrow. I'm so glad that you get to eat lunch with your dad and friends.
Bye for now!
With prayers, love & big bear hugs,
Wylene