Thursday, May 20, 2010

Gillette Visit Update

We had our visit to Dr. Gormley at Gillette on Monday.  I realized I haven't shared the report.  So, in interested, here ya go...

Overall the visit was good.  It was  our Botox follow-up to talk about the affects.  We informed the doctor that it was a bit too much this time as Roa was a limp noodle for the first two weeks with completely loose legs and wide open hands.  Right now, Roa is at the "good" amount of botox and is able to move in his gait trainer and grab objects again.  Dr. Gormley said that it is really just trial and error with each injection and that in time, Roa's body will accept the botox differently as it learns to process it.  Next time in 4-6 months, we plan on not doing as much in his arms and doing a bit more in his adductors for sitting with more ease.
We talked again briefly about the option for medications.  Dr. Gormley wasn't too fired up about starting Roa on anything new as he seems to be doing well with simply the botox.  More good news.  He said some day, we may look into the option of Phenol to help with tone reduction when Roa is older.

A few of Roa's therapists would like to see him give another trial with the power wheelchair this summer after he turns 2.  Bryan and I have mixed emotions about this as Roa really wants to walk.  We flat out asked the doctor for his opinion on this matter.  We were VERY pleased with he said that usually he is a pusher of powerchairs to give kids mobility, but in Roa's case, he feels that Roa will be a walker and we should  continue down the road with the gait trainer. NO powerchair.  YEAH!!    He did say that someday when Roa is older, a powerchair may be a nice option for distances.

Lastly, we chatted briefly with the doctor about the option of saving our baby-to-be's cord blood to use the stem cells to aid with Roa's development.  This is a new area of research occuring around the world with spinal cord and brain based injuries.  Little developments have happened as of yet...  No miracles, but small improvements in some of the children who have received the treatment.  In the US, only Duke University is performing the procedure.
The doctor said, it is so new, he cannot give a recommendation for it, but that many of his patient's are looking into this option.  He agreed with us that it may be worth looking into for who knows what the future of science holds.

It is frustrating not know for sure what we can do to help our Roa, but if there is a chance.... we will look into taking it!


  1. Woohoo! Wonderful to hear that his doc thinks Roa is going to be a walker! We also plan to save cord blood when (or if) we have more kiddos. I don't think they're doing sibling transfers at this point at Duke, but it seems like they would at some time in the future.

  2. I know in Germany they've had a crazy high success rate with stem cells. Like 82% or something!!! I don't know if I told you congratulations about the new bambino!!! YAY!!

  3. lurker here :) Just wanted to pipe in because I'm on a CP group on Yahoo and the subject came up... a mom was able to use baby teeth to extract stem cells. she hasn't gotten further, but apparently there is a bank out there that will send you a kit. I think she's also looking into Duke to see if they'll consider using it. it's very new but I thought you'd like to know about it. :)


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