Friday, July 31, 2009

More Daddy time!

Today, Roa is off for another aquatic therapy session with Andrea at the Courage Center and Bryan is off work to take him! Bryan loves to be a part of Roa's therapy and to get a chance to learn from Roa's great Physical therapist. I am excited to get some cleaning and organizing done before we leave for Madison on August 9th.
Bryan talked with his supervisors at work about our family's situation, Roa's diagnosis, and our upcoming therapy and they have been nice enough to let Bryan work a few days each week from Madison! Bless API! They have been very kind and supportive to us during this all. Roa and I are very happy that Daddy will be a part of our HBOT experience and will be seeing us a bit more than weekends.
Thank you to those of you who have offered to help us care for our dogs and cats during our time away. With Kimberly from Bryan's work helping out during the week and Al and Laurie helping on weekends, alot of the time is covered. If you would be able to be "on-call" for pet care, we would appreciate it greatly. Just give Bryan or I a call.
Please take a moment to read the HBOT links attached to the bottom of our webpage. Very interesting articles on hyperbaric oxygen and it's impact on children with cerebral palsy. Hopefully, word will travel and more families can seek help from insurance for coverage of this new therapy option. Have a good weekend!

Wednesday, July 29, 2009

AFOs, new friends, and lack of sleep!

Hello all-

Roa is adjusting fairly well to his new foot orthosis. If he could jusy figure out how to step BIG with these size 5 shoes! Roa wears his AFOs for 2 hours at a time and then we check for redness and let his feet breathe a bit. He fights them going on a little, but then just stares down at his big new shoes! :)

Tuesday night was a rough one for poor Roa! He went down at 8, but was awake and cranky from 11:30-2:30am!! Tooth coming in, muscles not relaxing- with arms in constant motion, or behavioral.... regardless of the cause, the Thayers were all CRANKY come 7:00am wake up!

Yesterday was our first meeting of the "Great Expectations" support group for parents of infants and toddlers with special needs. There were 6 other moms and 2 WBL ECSE teachers that joined us on the playground of Normandy Park Early Childhood Center! Wow! What a great turn out! The little ones played and the moms got to chat! It was great to connect and hear from other moms about area doctors, resources, schools, etc. We all are excited to continue to meet through out the year! The ECSE teachers will continue to help me organize the group, which is wonderful! Roa is especially happy to get to interact with other kids! His was fussy due to the hot sun and the lack of sleep, but put a little blonde girl in front of him, and he is all smiles! (Like father, like son! ) :)

Tuesday, July 28, 2009

AFOs today!

Today Roa had PT at home with Mary this morning. He was a hard worker, doing alot of side sitting, exercise ball work, and reaching and grasping. This afternoon, Bryan and I took Roa in for his AFO fitting. After the fitting, it was off to Target to buy new socks and shoes to fit with the AFOs. Oh, so much to think of! Thus far, Roa doesn't seem to mind the bracing of his feet-ankles-legs. Walking, however, is a whole new experience for him with AFOs and shoes 2 sizes to big on!
Tomorrow morning, Roa and I are off to the new support/playgroup that I am starting in White Bear Lake. "Great Expectations"- parenting an infant or toddler with special needs, is my new project and a much needed group for this community! I am excited to meet other parents and get Roa playing with other little ones in White Bear Lake. Wish us luck!

Monday, July 27, 2009

Blog- under construction!

Monday already?! After a busy weekend, it is back to the work week! Today Roa and I will be off to Occupational Therapy at Courage Center in Stillwater. His therapist, Carissa will be attempting therapy in the pool for the first time! Since he loves physical therapy in the pool, we thought we would give OT a try there as well.
Tomorrow Roa gets fitted for his first pair of AFOs (ankle-foot orthosis) that will help him learn to position his feet in a more typical way for walking. Roa also has Birth to 2 phyiscal therapy tomorrow with Mary at our house.
I am working on posting more video of Roa on this blog. We want to gather alot of footage of him during a normal day so that we will have a starting comparision point for his Hyperbaric Oxygen Therapy. Hopefully, we will see Roa's skills develop as he goes through HBOT and we will share his growth with you.

Friday, July 24, 2009

Night of sleep!

Good Morning Fans of Roa!
Roa went to sleep last night at about 8:00! Bryan and I got some much-needed Adult time! Not only did our sleeping prince go to bed earlier than usual, but he slept until midnight, got a diaper change and slept until 5:45am!! Perfect! I feel like a new woman with so much sleep!

Bryan and I decided to start this blog to not only give you a picture of Roa's day, but also to document the changes he makes through his various therapies. We will be posting video of Roa "at work" with therapy, as well as recent photos.
While Roa and I are away at Madison at the Wisconsin Hyperbaric Oxygent Therapy Center, I will use this tool to keep in touch with you all and show you the Center, the HBOT, and Roa's progress. Hope you enjoy this link into our world! Say prayers for progress!

Thursday, July 23, 2009

Starting off

We had a tough night last night... lack of sleep for all... So, I thought, why not pick today while Roa is napping to begin his Blog.... Roa Jo's journey!
Welcome to our life!
Today, Roa has tooth number seven popping through! He is in a pretty good mood though. Auntie Ellen stopped by to give Mom some relief to take a bath. No therapies for Roa today. Just hanging out with Momma!

Mom and Me

Mom and Me