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Sarah Halstead

You are here: Home | Family | Carsyns Rehab Appointment

January 9, 2014 By Sarah Halstead

Carsyns Rehab Appointment

Filed Under: Family, Special Needs Tagged With: cerebral palsy, Holoprosencephaly

Yesterday we met Carsyns new rehab doctor. As soon as she walked in I knew she was the perfect choice for us. She was energetic, sweet with Carsyn, and just really down to Earth.

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We talked about the Select Dorsal Rhitozomy. She says that she wants to try doing Botox Injections and Phenol Injections together first. So he will get his regular round of Botox in February. Then 4-6 months after that he will be put under general anesthesia for the Botox and Phenol Injections. The Botox Injections are not anymore painful then normal shots but she said the Phenol Injections are more painful.

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I was a little disappointed about not having the Select Dorsal Rhitozomy scheduled. I was also relieved though. It is major surgery and a little scary. So I think trying everything else out first would be the best. Then in a year reevaluate and see if she thinks the surgery would be beneficial.

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Other then his really tight hamstrings she said he looks great! She also wrote a script for us to look at wheelchairs for him and also a gait trainer. He has had his gait trainer for a little over a year and it just really hasn’t been working out that great. I really hope Insurance will cover the stuff and not give us a really hard time like last time.

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Comments

  1. Shannon says

    January 14, 2014 at 4:43 am

    Sarah I am glad that you were happy with the doctor. I hope everything goes okay. Your little one is adorable.
    • Sarah says

      January 23, 2014 at 10:21 pm

      Thanks so much! Sorry this is so late. Still trying to catch up from vacation.
  2. Naznin Azeez says

    January 12, 2014 at 9:53 am

    He is a sweetheart.. Hope everything goes OK... Glad you liked the doc :)
    • Sarah says

      January 23, 2014 at 10:20 pm

      He really is a sweetheart! Thank you!
  3. krystel says

    January 11, 2014 at 7:40 pm

    how cute is he
    • Sarah says

      January 23, 2014 at 10:20 pm

      Thanks! Sorry I was a little late on this. :D
  4. Darcey Priss says

    January 10, 2014 at 12:24 am

    I'm going to have to keep checking in on his progress, what a beautiful child! I'm glad you all had a positive experience with your new doctor. That's so important!
    • Sarah says

      January 11, 2014 at 10:50 am

      Thank you so much Darcey.
  5. Stephanie Clark says

    January 9, 2014 at 2:49 pm

    I'm so glad your appointment went great! I hope you guys see good results from the combo. Putting on my social worker that works in a rehab hospital hat - to suggest getting a copy of your insurance policy including updates from the affordable care act to see what it actually says they cover when it comes to DME's. You may have already done this, but I find it helps when the patient/family can advocate for themselves directly with the insurance along with their providers/suppliers.
    • Sarah says

      January 9, 2014 at 3:16 pm

      Thanks so much Stephanie. Yes I keep forgetting about all the changes.... I need to get a copy. Last time insurance assigned me a patient advocate that helped tremendously!
    • Mindi says

      January 9, 2014 at 4:51 pm

      How did I not know you are a social working in a rehab hospital. Very cool! :) Hooray for helping professions. After working in a hospital setting for almost 10 years it's such an odd transition to go to a school. I'll still be working hospitals PRN though. :)
      • Sarah says

        January 9, 2014 at 4:52 pm

        Learn something new everyday!
    • Mindi says

      January 9, 2014 at 4:52 pm

      Sarah I'm so glad you like his new rehab doctor. I hope you don't get too much run around with the insurance stuff. It can be such a pain in the butt.
      • Sarah says

        January 9, 2014 at 4:53 pm

        Thank you! For sure.
  6. Andi at BringingtheSunshine.com says

    January 9, 2014 at 2:25 pm

    Don't believe her about the Botox. It's very painful (Sarah Kate has had Botox several times, as has a friend of mine with spinal cord injury-related spasticity - they both said it's awful). The good news is that it's over quickly.
    • Sarah says

      January 9, 2014 at 3:15 pm

      Yea I am sure it is but thankfully he is fine afterwards. She said with the phenol she also has to do some nerve stimulating to find exactly where to put it. So it takes a little longer.
  7. Allie says

    January 9, 2014 at 1:24 pm

    i just want to eat him up! Prayers coming your way for injection success and insurance ease.
    • Sarah says

      January 9, 2014 at 3:14 pm

      Thanks so much Allie!
  8. Tamar says

    January 9, 2014 at 10:31 am

    Glad you liked her! Hope the new injections are a big help!!
    • Sarah says

      January 9, 2014 at 3:14 pm

      Thank you Tamar!
  9. Alyson @Vintage Sunshine says

    January 9, 2014 at 10:26 am

    Sarah, he is just adorable. Glad to hear that you were happy with the therapist and that everything went well. Good luck with the insurance company, hope they're easy on you!
    • Sarah says

      January 9, 2014 at 3:14 pm

      Thanks so much Alyson! It is hard to fight with the insurance companies but is usually worth it in the end.

Welcome

I'm Sarah and I am the writer behind this blog. I love sharing recipes, DIY projects, photos and about my everyday life. I married my high school sweetheart Kenny. We have three boys and one baby girl - Dustyn, Carsyn, Prestyn, and Annelyn. Thanks for stopping by, can't wait to get to know you more. Read More…

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