Monday, February 15, 2010

The Land of Know...

I had a lengthy discussion with Roa's physical therapist, Mary, about his disheartening MRI results, therapy goals, and alternative therapy ideas.  It felt good to share, bounce off ideas, cry, and vent to Mary.  Mary has her doctorate in PT.  She worked specifically with peds. to get her pediatric certificate.  I value Mary's opinion and her experiences working with tots with motor delays.
We discussed in length Roa's struggles, my fears of the MRI results, our search for help for Roa. 
Mary shared with me that MRIs are fairly new to the world of CP.  She said in her 20+years, MRIs usually were performed if the child had concerns such as seizures.  In one case, Mary worked with a little guy who was walking with a walker and talking before an MRI, performed due to onset of seizures, revealed that a large portion of the white matter in the left hemisphere of his brain just didn't exist.   I NEEDED to hear a story like that!
Mary doesn't want us give up on traditional PT.  She is highly motivated to get Roa walking.  We want to do the very best for Roa and are pursuing all options in therapies.  It makes for a busy schedule, but we will continue to go above and beyond for our boy.

So, our schedule looks as- 
Sunday/ day off for church and family time  
Monday/OT homebased and aquatic therapy with Dad at Courage Center
Tuesday/ Anat Baniel Method therapy homebased  
Wednesday/ ECFE school group with EI teacher and  afternoon Craniosacral therapy homebased  
Thursday/PT homebased   
Friday/ Momma therapy day! and Speech therapy once per month or PT at Courage Center once per month 
Saturday/ Conductive Education group in at the Plus Center and aquatic therapy at Courage Center
--Three nights per week- Hyperbaric Oxygen Therapy homebased
**Chiropractic adjustment every 2 weeks with Dr. John

I have had such great response from parents and conductors in the world of Conductive Education.  I am very intrigued.  We are starting with a once a week trial of the program as recommended by Ors at the Plus Center.  I will follow through with methods at home and see how it looks for Roa and we will go from there.

Today, Roa and I are off to the Upper Room Wellness, a center that offers Brain-Based Therapy for a variety of conditions including, Depression, ADHD, Autism and CP.  This is just a consultation to see what ideas they have for a toddler with CP.  Like most of my discoveries, they do not have alot of  experience with someone as young as Roa, but are willing to check him out.  Wish us luck!

Oh and.... check out the video of our boy on the move in his gait trainer. He is as happy as a clam to move on his own and be chased by Mom and Dad!

3 comments:

  1. Let me offer two very serious points for your consideration... not for instant revelation, because it won't work like that, but to wriggle and worm their way into your mind and, perhaps sooner that had might otherwise have happened, start make sense of the buzzing world that will press in on you and your family as you bring up up your little boy with cerebral palsy.

    1. Your week's timetable. Ouch! Bring up your son, his every waking hour as you would any child, but do so conductively. Get those who advise you on CED to explain what conductive upbringing is, and if they cannot understand this in English, try the Hungarian words 'konduktív nevelés'.

    2. I know that you will 'want to try everything' for Roa, but treat things that are 'brain-based' with the same healthy scepticism that you would if they were advocated for any other child (or for yourself!). As for all that water, and other things... rally, would you put a normally developing child through all that, or find something else to do.

    Sorry if you find these harsh words, they are not harshly meant. They are what I would say to you if you were here in front of me, as I have said to others before you. In those circumstances I migh state it differently, and be able to follow it up better with you and yours., but you are thousands of miles away and this is the best means available. As I said, don't try to take them straight on board, but do start thinking very critically...

    Andrew Sutton

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  2. I was just about to write a comment here when Andrew's popped up.

    I just wanted to say what an extremely busy week.
    There doesnt seem to be much time left for living and everyday things like the park and play and meeting other people.

    I hope that when you discover more about conductive upbringing that you will learn how to live conductively all the time doing every day things. Living conductively at home and at playgroup, on holiday, in the park and while shopping until eventually the never ending stream of therapies will be a distant memory.

    Good luck and keep reading Dina!

    Susie Mallett

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  3. Hi, I read this post and wanted to comment as you and your child's routine reminds me of the routine of many young children with cerebral palsy. As a parent you are exploring everything you can in relation to therapy and education for your child, which results in a very full week. I am not going to say this is wrong as at this stage you are not only educating your child but also yourself, and along the way you will see what works and what does not.

    My advice to you would be that sometimes quality is better than quantity. I am sure you will find that the week you describe is not only tiring for your child but also for you as a family, running back and forth between appointments. Be careful it does not become a chore, after all education should be stimulating and fun to maintain the childs interest. Also remember that time-out periods with family and friends can be just as educational and important to your childs learning as the therapies and education he will receive with others.

    I hope you find this advice useful.

    Becky Featherstone
    Conductor

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