Haven did great with PT today. She has been working hard on her exercises lately. We're working on the hips and shoulder regions the most as these are her weakest areas. We also noticed that her left side is not used as much as the right side.
Haven does 1 hour with her physical therapist twice a week and then we keep it up on the other days. She can climb up 1 flight (or two sets of stairs) ok but it really wears her out. She has been doing sit-ups, leg lifts, squat walks, and lots of arm exercises.
I bought her a large exercise ball and a small weight ball last weekend. This weekend we're going to buy her some 1lb dumbbells so it's easier for her to hold. She is required to spend 30 minutes each day kicking and throwing a ball. This wears her out - she will sleep for 3 hours after working out.
I love PT - Haven has shown us that she can do things we never thought she could. She has more energy now and we believe she is starting to feel better about herself. She even went through the house acting like an airplane the other day! WE'VE NEVER SEEN THAT! She doesn't do anything normal kids do so this was a surprise to us.
Once we get her hip looked at and get the ok from docs we'll be able to start riding bikes and doing more impact stuff like running and jumping. Then I can buy her the small workout trampoline - which will help with her knees.
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, Haven!
ReplyDeleteWow! I'm so glad that you're doing well in PT. Keep up the good work. I love your new photos.
Praying for you and your family.
Bye for now,
Wylene
way to go Haven, keep up the good work
ReplyDeleteEach Wednesday at Being Cancer.net we feature a Guest Blog. This week we are highlighting neuroblastoma with two guest posts. The first is by Connie Powell, mother of Miss Madelyn, who recounts what the experience of diagnosis was for her and her family. In the second a twenty-four year old NB survivor, Erik Ludwinski, reflects on how cancer has affected his young life. I know that neuroblastoma has a strong blogging family. So thought you might be interested in visiting. Also please visit the “Neuroblastoma” section of our blogroll, Cancer Blog Links, to see if your site is listed. www.beingcancer.net
ReplyDeleteTake care, Dennis