As you know if you've been reading this blog for a while, Emma will have surgery on her arms at some point to straighten and strengthen the wrists. Many people with TAR Syndrome undergo this type of surgery.
Last Monday we took Emma to see Dr. Lightdale, a hand/arm surgeon at CHLA. Dr. Arkader had recommended that we see her and talk to her about surgery options. Apparently Dr. Lightdale uses a modified version of the centralization technique, with an internal pin rather than an external fixator, but she feels that it's been quite successful for her patients. She presented her own philosophy and approach to surgery, and told us that she would be happy to do the surgery on Emma's arms if we wanted her to.
Dr. Lightdale also expressed willingness to act as a local support person if we still want to go with Dr. Paley for the arm surgery; in other words, she would be happy to adjust the fixators, etc., during Emma's recovery period.
Dr. Paley has been our first choice for a long time now, but lately we've been wondering if it will be economically feasible to use a doctor who is 3000 miles away! I thought we would be able to afford it, but that was before I developed so many health problems of my own and ended up in a wheelchair.
We are praying for guidance in this matter...we want the best for Emma in every area.
5 comments:
If this is what God desires, you will have the way to provide for it. I know thinking in the long term is hard, but He is faithful!
((hugs))
Thanks Holly! I need to remember that God is our source, not my job(s)....
((hugs)) back!
P.S. Did you get my email?
There is a mom you need to talk to. Kids some kids with Down syndrome have a malformation of the neck. The best surgeon in the country was in Philly, but my friend lives in TN. She flew to Philly every 6 weeks for several months! She had surgery in Philly, stayed at a hotel for a month after (her daughter was in a halo for 6 months) and flew back for check-ups. All of it was covered by Shriners!!! Anyway, contact me at deanleah at comcast.net and I'll get you her contact information.
Oh no! You in a wheelchair?!?. Is everything okay? I sure hope so!
I so know what you mean about wanting the best for Emma. I'm in a very similar boat at the moment. Looking at getting PERCS for Logan. The doc who is best is in New Jersey. Only about 14 hours from where I live in Michigan. So do I go there cause he is best? Or go do Detroit which is 3 hours away and have someone else familiar with the procedure do it. UGH! I hate these decisions. There not easy are they?
Thanks again for your help in contacting Rachel Garcia, Leah!
Keri, I've been having "adventures in autoimmune diseases" for more than a year now. The RA and fibromyalgia cause enough pain that I need a wheelchair to continue working (I have two jobs, and one is teaching at a local community college). I also use the wheelchair to cook from...but I'm hoping that all of this is temporary and as I heal on the gluten-free diet everything will go into remission! :)
It just sucks that my health issues are so expensive that they are draining away some of the money we could use on Emma!
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