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Tuesday, July 17, 2012

Botox take 2

Brielle had her second botox appointment today. I was alittle on edge, because I didnt know what they were thinking or what was going to happen. Recap...In April when she had her first botox, it lasted 3 weeks. While we dont believe it did anything for her hamstrings/legs, we do think it helped her get her midline and posture in check and stronger. She seems to be not pulling her arm back and winging as much when she walks as she was prebotox. As far as her legs, we all agree it did diddly squat. So with all that checked out the Dr said that she gave Brielle the minimum dosage for her weight because she is such a peanut. She didnt want to overdose her (Thank you very much) and she didnt want to give her too much if her body wasnt going to react well. Its like any other medicine, you have to make sure the child tolerates it well and isnt allergic etc. Our wonderful physcial therapist, Lisa, came along to give her suggestions as she is the one that works with Brielle weekly. I was grateful as I wouldnt know what to really tell Dr Morberg. They conversed and Dr Morberg did some stretcing exercises with Brielle and then discussed with me. Basically our options were to give botox in a few different locations because last time it was just given in her hamstrings and obviously she needed more. She explained to me that in alot of kids with high tone, Brielle, if you give it in one location the stiffness tends to go up or down. Ex. She gave it in her hamstring...upper thigh...so the stiffness stayed lower in her calf and ankles. Which makes total sense since she is toe walking and dragging her left toes. She also explained that Brielle is a prime candidate for Phenol. Phenol is a deeper version of botox. It lasts 6 months instead of 3. But for phenol to be administered she would have to be put to sleep for 10 minutes. Because she is walking and self feeding etc, we all agree this is not the right option for us at this time. I then brought up her thoughts on the oral baclofen I have mentioned before. I was quite surprised at her response. She LOVES oral baclofen for these kiddos and highly recommends it. She said she works with it alot! I asked if it botox vs baclofen or if they work well together and she suggested to have them work together. So thats what we are trying. Brielle got botox in her hamstrings and her calfs. Tomorrow we will start the baclofen. The only thing is, the baclofen is a pill. It doesnt come in liquid form. So getting a 2 year old to down a pill should be pretty interesting. I can crush it, but if anyone has tried to feed this child, they will totally get where Im going with this. She is picky! She wont eat applesauce, yogurt (USED to LOVE), pudding (seriously!?!?! What kid doesnt?). I have to get creative here! I hope the baclofen and botox combined do the trick!! We should know in about 2 weeks or so! Fingers crossed!

As far as my infection...I am on the antibiotics and I feel pretty confident that they have stopped/slowed the infection! Fri/Sat were kinda scary, but Sunday I felt completely normal. Almost symptom free! I am so grateful that it was caught in time and the pills kicked in right away! It was quite the emotional rollercoaster on Thursday when the news came in it was a positive test. But whatever god throws at us, we will take head on and jump right thru. Officially in the third trimester, I feel pretty good this rainbow baby is sticking til October!

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