To give a little background to the update below I’ll begin by explaining that in August of 2010 Nathan and I took Drew to Boston Children’s hospital for a second opinion regarding Drew’s legs. We were seeking a second opinion because Drew’s doctor at Vanderbilt felt a little reluctant to perform any type of corrective surgery that would remove Drew’s contortionist-like ability to use his feet to compensate for his upper extremities. Valid concern, but like caring parents we are, we just didn’t want to accept that without a group of experts saying the same.
Dr. Kasser, the Boston doctor we consulted with, was very positive about Drew’s walking future and suggested we have an MRI done in Nashville which we did a month later. Soon after, we consulted with Dr. Mencio, the ortho doctor that has been seeing Drew since birth, and he requested a video of Drew and his use of his legs that he would take with him to a convention with a group of ortho doctors to discuss. Not long after, a jump drive with a five-minute video was on its way. I was to hear from them at the end of January.
Below, you’ll find an email chain from Dr. Mencio’s office that I started to inquire about the results of the discussion at the conference.
| Subject: Drew Wesley Gatten |
02/03/2011 16:50 GATTEN, JANEL: On December 9th I brought my son Drew Gatten for a consult with Dr. Mencio during which Dr. Mencio requested a video of Drew and his use of his legs in order to present during a convention with other orthopaedic doctors mid-January. He gave me instructions that I could call at the end of January to learn about any new developments, plans, ideas, etc. that came out of the discussion. Do you have any updates or instructions? I can be reached at 270-xxx-xxxx or here, or Kyjanel@hotmail.com. Thanks!
[this email was sent after two voice mails left at the office went unresponded to. At this point, I’m silently annoyed] 02/11/2011 08:30 Swett, Syrenna RN: Dr.Mencio said “there was not a concensus, with opinions split over doing surgery to straighten his legs now or in the near future to allow him to ambulate better vs those concerned about the “trade off ‘ of losing some of the adaptive functions he has developed with his legs to assist/substitute for upper extremity function. I am in process of sending the disc to Dr Kasser ..who has seen Drew previously ..for his additional opinion in light of what he demostates functioanlly on this video. I am taking the stick with me next week to ask the opinion of another group of peds ortho surgeons. I will call the week of Feb 21 to discuss” So we will get back with you the week of 2/21 Thank you [yay! finally heard back from them and almost in a way to prove me wrong when Nathan urged me to be patient and wait until Friday (today) to escalate, but if you know me at all you know that I can’t be that patient. So, what do you know, I get the response today. Did this office overhear this conversation with Nathan or something?] 02/11/2011 11:32 GATTEN, JANEL: ok, great…glad to hear from you. Perhaps you can send the MRI that Dr. Mencio ordered in October to Dr. Kasser as well as Dr. Kasser is who suggested we discuss it with Dr. Mencio. I also sent Dr. Kasser an email via the Boston Children’s Hospital website probing for advice regarding what our next steps should be. [this was my escalation after Nathan had urged me to wait until today…I wonder what I did to Dr. Mencio’s office that they would go through such great lengths to record my conversations and wait to react when it would make me a fool? haha] Although I understand and have the same concern regarding the tradeoff, I think its important for everybody to know that Drew only uses his feet as hands for about 40% of the time. Drew is perfectly capable of using his hands independently. And, because I have a son with these abnormalities I follow stories of other people with similar circumstances who have completely normal legs, as normal as yours and mine, who put their makeup on with their feet, fly planes, and even one guy who is an archer (you know, bow and arrow) who is a contender for the 2012 Olympic team so I don’t think it’s necessary that his legs remain rotated (However, I do appreciate that I’m not a doctor, but I am his mother so please forgive me for being so assertive…I hope you understand 😉 Also, I’m not sure I’m comfortable with sacrificing his ability to walk so he can use his feet as hands 40% of the time and, again, I’m no doctor but I would expect that with plenty of physical therapy and time Drew would regain most if not all his flexibility to do the same things that other armless people have accomplished with their normal legs. And, being that Drew has accomplished so much with what little he has and he only knows how to adapt to what he’s been given, I’m confident he’ll figure it out. [this is me begging! I’m not a proud mother, am I?] Ok, thanks for finally getting back to me and I can’t wait to hear from you, Dr. Kasser or anybody else who is willing to help. Thanks! [this is my passive-aggressive way of saying “You better #$%^ing call me back ASAP!!!]So, now we wait until February 21st. Ugh.
drewunarmed 
Janel, I am in awe of what a great Mother you are. You are fantastic. I love reading the updates and watching the videos. Words can’t describe the joy I feel when seeing that precious lil boy. 🙂
Janel, I am so happy that you are such an advocate for Drew. As mothers of kids with TAR, we are the best ones to say what our kids are capable of. Sometimes we have to push the doctors, for the good of our kids. Have you seen Dr. Paley in West Palm Beach, FL? My daughter Emma has “long arm” TAR but also uses her legs and feet to do alot of things. However, I have seen Dr. Paley do amazing things for kids with “short arm” TAR. Take care and keep up the great work!
Well, hopefully next week we’ll hear something from his doctors in Vanderbilt, whether it’s a doctor in another hospital or whether the doctors in Boston want to see us again. If ntohing comes of it, we might have to think about Dr. Paley. I haven’t met a doctor yet that has seen TAR or has any experience with it. Thanks for the tip!
What a great post! I understand your frustration and lack of patience :). Our 3 year old daughter has long arm TAR and was almost two before she took her first independent steps. You are being an amazing advocate for your son and he will walk soon! If he is half as persistent as you are he will get there! If you are in Boston any time soon please let me know as we live very close to Boston Children’s Hosital. We would love to have a visit!
yay! I will definitely let you know. It would be nice to meet somebody with our same experiences!