Wednesday, May 23, 2012

Team Rojo

We said we didn't want to do it.  Our pride, our independence has kept us from asking for donations.  Many friends and family have given to Roa's fight through the years and we THANK YOU!
But, Roa has a chance to partake in an intense therapy program this summer.  The method is one that I have talked of before.  One that we tried for a brief time- Anat Baniel Method (ABM).  The program is pricey.  Insurance doesn't cover the cost because it is still considered experimental/alternative in nature.   We are looking to raise around $1200 to cover the cost of one weeks worth of sessions.
If you can find it in you heart... have a little extra in your pocketbook this month... please consider donating to Roa's fight.  
I have added a donations button to the right of this post.  It is through Paypal.  Safe donations and a chance to send Roa and family an encouraging note.

Thank you Roa's Angels for your time, prayers,  and cares.  ~  Jen and Bryan

Tuesday, May 22, 2012


Will there ever be a time when we get to say, "well, that does it! Enough. Finished. As good as it gets. Over." When it comes to therapies, methods, trials, products, devices, equipment. Will we ever just get to say, "This is it! Answer found. Problems solved."? Some day, will I get to fall asleep thinking of tomorrow with anticipation of a bright new day? Or will it continue to be a clock ticking away, Calendar whipping thru pages. Minutes that count so much when there is only so much time in a day to find that cure? Will I ever watch typical children and not mentally process their every move with awe of God's perfect creations? Muddied by God's little mistakes? Does the guilt go away? The guilt of not being parent enough? Not being wealthy enough? Not being driven enough to find what my child needs? These are questions I have tonight as I gaze out the glass prison window of CP Land White Bear Lake. We are trapped here. With so many doubts. So many fears. So much hurt. And so many questions we will continue to have while other parents get to enter blissful sleep in the land of the Cerebral Strong.

Thursday, May 17, 2012


I had some trouble saving and posting on the blog in the past few weeks.  Sorry for the delay.  Time for an update.

Roa has had phenol and botox injections at Gillette.  He is adjusting very well and has a super gait right now for gait trainer walking and free walking-supported.  Floor time is a bit of a limp noodle fest, but we are working away at sitting, stretching, rolling, and moving in a crawling pattern.

Roa has begun working with a new private OT which is very exciting!!  I found Maile on and she happens to be in the Twin Cities area just for the spring/summer months.  She will be working one on one with Roa in a summer preschool program, conductive ed., and in our home.  Welcome, Maile to the team!

Jenni is our other PCA and has been great working with Roa Thursdays and Saturdays at Conductive Ed.  Roa is doing well at CE, continuing to make subtle changes every week.

Summer is right around the corner and Roa will begin Courage Riders again.  We can't wait.  Horse back riding is such a great way to gain trunk control.

As difficult as it is to come to this decision, Bryan and I have decided to sell our home and build a handicap accessible one story in a neighboring community.  We are anxious about this decision.  We LOVE our home and our neighborhood is the best!  However, the three levels is getting very difficult at Roa grows.  35 lbs now and tall!
Say a prayer that we can have a quick sale and low stress move into the building process.

Until more time allows.....               Jennifer

Mom and Me

Mom and Me