Tuesday, October 12, 2010

Update after a break from the blog

Hello Fans of Roa!  I've had a couple friends and family ask "what's happening with Roa, why aren't you blogging?"    So here we go.... The Roa/ Thayer Family update:

I am almost 34 weeks along now in my pregnancy and have been blessed with a fairly easy time of it these last few months.  Thank you, Lord!  Roa is pretty accepting that Momma isn't as physically able to carry and move him around as much as I used to.  We do alot of floor play and play at his floor table, stander, or high chair.  I catch a nap when he naps, thus my computer time is pretty limited to email catch up.  But, I will try to do a weekly update.
With the gorgeous fall that we are having, we get out twice a day to walk the street in the gait trainer.  Roa is doing so well moving in his trainer!  It has been such a nice activity for us to walk up and down the street, greet the neighbors, kick his ball, and kick through the autumn leaves! 2 hours of our day is spent on our walk.  Roa is really building up nice endurance and goes such a distance!  Now we have to teach him how to move with more independence and steer himself.

With winter creeping up on us, we are looking into gait trainer options as his current Pacer, borrowed from the school district,  does not move through snow (or wet leaves, we've discovered).  We are hoping Rifton Co. will help us find a nice solution for continuing our outdoor walking throughout the Minnesota winter!
Besides contacting Rifton, we are also in connection with the LiteGait Co. to see about renting a LiteGait system to continue Roa's treadmill training at home.  Roa continues to do the training on the treadmill at Courage and is doing so great!  Check out LiteGait on Facebook and see our boy's video!  I was very pleased to find out via a LiteGait rep. that we wouldn't have to purchase the expensive piece of therapy equipment outright, but could look at renting.  Things are falling into place!

Roa has botox injections on September 3rd and things went very well!  Dr. Gormely choose to do a smaller amount in the hamstrings, larger amount in the adductors, and a bit in Roa's thumbs.  Roa is reacting well to the botox amounts and is grasping objects with more confidence as well as sitting for a few minutes with independence.  Nice changes.

On a negative note, Roa continues to battle with sleep causing many rough nights for the Thayer clan.  We finally broke down and revisited the Gillette sleep specialist, Dr. Garcia, last week.  Upon our discussion with him, he shared with us that he thinks that Roa's sleep issues are biological in nature rather than behavioral or muscular.  He thinks we have established a great bedtime routine and are consistent with the schedule (pat, pat on our backs!) and that Roa's brain is not letting him shut down to allow cycled sleep patterns.
Thus, we are trying a sleep medication, Doxepin, in a small dose.  It is not a long lasting drug, so shouldn't affect his daily life or make him drowsy.  It has very limited side effects.  We were very thankful that we didn't have to go with the harsher drug choice of Valium or Baclofen.
Roa is on 4 nights with the medication.  He takes it like a champ at bedtime with his snack and has been sleeping until about 3:30ish when he then needs only a position adjust or diaper change.  He then wakes at his usual time of 5:30/6:00ish, BUT has been going back down the last few days to wake for the day between 7 and 8:00!!!!  HEAVEN!! 
We pray that this positive effect continues and Roa will make some nice gains developmentally with the additional sleep.... And.., make life a bit easier for the creaky ol bodies of Ma and Pa Thayer!

We have begun our school year session of Early Childhood Family Education class.  This year, we are attending the Tuesday evening session so that Bryan can be a part of things and can take Roa after I have the baby.  Roa LOVES school this year!!  Running around the playground in his gait trainer, kicking balls at gym time,  fingerpainting like a madman!  He squeals and giggles during the group songs and activities and listens so quietly at story time.   Daddy and I are so very proud of our boy! 
Roa is the youngest one in the group of about 10.  There is one other child with special needs in the group this year, a 4 year old little girl with a hearing impairment.  It is really nice to see.  The teacher, Janet, is very nice and tries to include Roa in everything given his physical differences.   ECFE is such a wonderful program!  We are impressed.

Roa continues to have weekly home-based Occupational therapy.  He has speech therapy twice a month, Physical therapy, twice homebased/month, weekly at Courage and also has EI teacher services once per month.  We have taken a break from ABM for the fall but continue with Craniosacral once per month.  Dr. John and his chiropractic magic is apart of Roa's routine 3 times a month and also has helped with sleep.
We continue to travel weekly to Burnsville for Conductive Education with Ors and wish we could do more!  Tomorrow, Laurie and Lynsey, Roa's OT and Sp/L therapists, are joining us to check out the amazing results of CE!  I am excited to have them see all the things that Roa does with independence while working with Ors!

Gotta run, nap time is over for King Roa and he beckens!  Nice to be "in touch" with my blogger family again!

Mom and Me

Mom and Me