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Friday, July 20, 2012

3 steps forward.....2 steps back

Day 3 of oral Baclofen. Oral baclofen helps by reducing spasticity and improving function in children with cerebral palsy. Brielle has been showing signs of having muscle spasms over the last 2-3 months. Very possible shes had them longer, but starting to verbalize now that she is in pain, which is nice for us that she can help us out and tell us what is wrong! The baclofen helps relax the stiff muscles and in turn reduces tightness and tone and also eleviates the spasms she is having. We were giving her 5mg twice daily. At her therapy session yesterday, she had just woken from a 2 hour 15 min nap, that I had to wake her from for her session and she was still so sleepy she couldnt wake up. I raised the concern to her therapist that all day yesterday she was falling alot! And she would fall hard. She used to be able to catch herself and put her arm down to catch her or slow herself to a graceful fall and now it was hard straight to the ground. And of course, Brielle was getting flat out pissed off and alot of crying was happening! She got to the point where she just didnt want to walk and wanted to always be in our arms carried everywhere. Not like her at all. This girl loves to walk on her own. So red flag for sure! Her therapist explained that she has learned how to walk with stiff legs. She doesnt know any different. NOW we are relaxing her muscles with botox and the baclofen and she has to pretty much learn how to walk on new muscles all over. Try telling a 2 year old to be patient and work on that!! Today I am giving her 2.5mg of Baclofen twice a day and instead of morning and afternoon like we were doing, I am going to do mid morning and before dinner. She is just getting to tired and zombish to give them to her at 730 and 1230 ish. I want to space them out a bit. Her doctor did tell me that we are going to have to play with the dose and times she gets the pills. Its just really hard to watch your child struggle and become so frustrated. I dont think the 3 steps forward 2 steps back feeling from the NICU ever leaves with a micropreemie. And then add CP on top of micropreemie....... 


  1. I read something a while back about toddlers learning how to walk. The suggestion was to have them walk down small hills (once they knew how to walk) to help them learn to pick their feet off the ground and I think that might help bend their legs a little too. When kids learn to walk they always have at least one foot on the ground and small hill help them develope into running (faster walking) and using their legs better. I wonder it that would help?? Just throwing it out there for you. Good luck!

    1. It does Kristi! :) We have been walking up and down hills and any uneven ground is great for her to walk on too! We have a therapy wedge too that we can have her walk up in the house that she actually likes to do! She has stepping stones too that she LOVES. They are half circles and squeak when she steps on them. We line them up in a straight line or stagger them. Helps her to learn to push her whole heal down as she doesnt put her left heal to the ground. Her Physical therapist is awesome at bringing me toys and tools to "rent" out and help her to the fullest! Birth to 3 is amazing and Im not looking forward to June when we loose them!