SDR Consultation

Part One of this story can be read HERE.

I’ve been meaning to sit down and write an update since we’ve been back but it’s been difficult to find the time! Man, we’re in a really busy spot of our lives right now! But I suppose that’s to be expected when you have a young family… there’s always stuff going on and things to do.

Anyways, we traveled to St. Louis last weekend with Caleb to meet with Dr. Park from St. Louis Children’s Hospital. Thanks to an informative Facebook group, we had a good idea of what to expect, as well as recommendations on where to stay and what to do while in St. Louis. I think I’ll recap the rest of the trip, aside from the appointment in my next post, to include lots of pictures.

On Monday morning, we walked over to the hospital (our hotel is actually connected to several local hospitals via a skybridge) and checked in to see the doctor. Our first stop was to view a slideshow that fully describes the SDR process, possible complications and statistics. It was very informative and this presentation is actually available on YouTube for anyone interested in learning more.

Next we met with the head physical therapist who got some baseline measurements related to Caleb’s flexibility. I’m not familiar with the technical jargon, but she essentially measured how many degrees past neutral that she could bend Caleb’s joints. She also answered a ton of questions that we had. Caleb’s therapists here in Maryland haven’t worked with a child who’s had SDR recently, so they had a lot of questions that I was able to get answered for them. After meeting with the physical therapist, we finally met Dr. Park. What I liked best about him is that he didn’t sugarcoat anything for us and he was very honest. After watching Caleb walk and feeling his muscle tone, the doctor told us that he felt that Caleb is an excellent candidate for this procedure. Dr. Park anticipates that Caleb will be an independent walker (in all environments) by 1-2 years after this surgery. Even writing these words gives me goosebumps. Having Caleb be completely independent is something we’ve wanted for him for so long. We were also told that if Caleb gets this surgery while he’s three, he only has a 20% chance of needing additional orthopedic surgery in the future.

With all this information, we felt comfortable moving forward with this process and have booked Caleb’s surgery for August 28. ¬†We look forward to going back to St. Louis, this time with Wyatt and a new baby in tow. We’ll be there for about a week and anticipate a very rigorous physical therapy schedule for at least a year post-op. It’s going to be a crazy and difficult year, but I’m anxious to work hard alongside Caleb and keep focused on his goal of independence!

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I'm a working mom of three fantastic boys: Caleb, Wyatt and Parker. My husband, Shane, and I live in the Washington DC suburbs where we enjoy playgrounds, pools and never getting to sleep in. This blog is a journal of our day-to-day lives as well as a chronicle of Caleb's progress after a recent spinal surgery to alleviate the effects of his cerebral palsy.

Posted in SDR
8 comments on “SDR Consultation
  1. Pat says:

    Wishing you all good things. Good luck with new “little Mac” and of course Caleb’s surgery. I’ve read it can be very effective. Pat

  2. SueLynn says:

    Reading this brings tears of joy to our eyes! Praise god! Yay! Yay! :-)
    SueLynn and Leila

  3. Danielle Skordas says:

    Glad to hear it went well! Love you guys!

  4. angie says:

    So happy for the great news, for Caleb!!! You are such strong parents, and Caleb is so lucky to have parents who work so hard to give all they can so Caleb will walk by him self some day!! :)

  5. Christy says:

    Hi – So glad to hear you received such wonderful news. I have been following your blog as I have twin daughters that are in a similar situation as your sons. My one daughter has not been diagnosed yet, but we are heading down the same path (she is 15 months actual now). I was curious if you have any insight on what insurance will or won’t cover with this surgery – or what general costs OOP look like? Also, did they say if there is an ideal age to perform this surgery, or generally younger is better? We live in STL and my daughter has been seen by several neurologists, eye doctors, etc at SLCH and we have had good experiences with them all. Both my girls spent some time in the NICU there too! Good luck with everything, will be praying for you all :)

    • Hi Christy! Thanks so much for reading! I always enjoy hearing from other parents who are in a similar situation as ours. As far as I know, our insurance will be covering this procedure so we just need to pay the surgery co-pay which is like $175 or something like that. I know families from overseas typically have to fund the whole procedure plus post-op and it’s something like $40,000! The doctor said younger is better but 2-5 is ideal. You can get a ton of info about this surgery and SDR in general from the SLCH SDR facebook page! Just search Selective Dorsal Rhizotomy – St. Louis Childrens Hospital and request to join. Lots of post op patients and families of patients who give great advice and lots of parents like us who are in the beginning stages of this process. I highly recommend you check it out! We’ve been impressed with SLCH as well as the city of St. Louis and look forward to returning! Good luck and please don’t hesitate to email me if you have any other questions! Email: ali.danielson4@gmail.com

  6. bill and rose says:

    Hi, I guess you won’t be going to the reunion in July. So, if you would sent me your pvt e-mail I would like to ask you abt your trip to St Louis in Aug. and give you some info. Bill & Rose

  7. […] marks six weeks since Caleb’s spinal surgery (Selective Dorsal Rhizotomy) in St. Louis at the end of August. Since that time, Caleb has had physical therapy 3 times a week […]

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