Our Appointment with Our New Orthopedic Surgeon

Today we made the trek down to Caron Children's Hospital to meet with Dr. Goggins, the doctor that we were hoping would take Dr. Segal's place.  Our appointment was at 3:15, and we live about an hour away, so we left at 2:15 to make it there in time.  We checked in right on time but actually didn't get to see the doctor until about 4:45, so it was quite the wait. I am happy to announce, though,  that we liked Dr. Goggins and plan to use him for Madi's upcoming surgery, as well as our future appointments.  He spent quite a bit of time with us and never tried to rush us along.  He was sweet with Madi and didn't seem to be bothered by her mini-meltdown during the appointment.  We talked about Madi's tight heel cord, the plan to fix it, the stander appeal we had in the works, her recent MRI, her scoliosis and tethering, and all of that fun stuff.  He is going to help us appeal her stander and seemed to have a good plan of attack.  He said he would write a letter with everything in it they were questioning so that they didn't have any more arguments, but is going to have his nurse help him with the logistics to make sure that it was done correctly.  I asked him to review her recent MRI and his findings left me quite hopeful.  He had a bit of a hard time seeing her scoliosis, as one scan stopped half way through where her scoliosis is located, and the other one started half way through.  He said he thought he was able to see it good enough, though, to see how she was doing.  Her spine is curved, but only down lower where the tethering is.  He said it was about 20% curved, which is a huge difference from the 50% we were told after her last x-ray.  Scoliosis between 20% and 30% can often be stopped, or even reversed, with the de-tethering surgery.  He also thought that the spine wasn't twisted/inverted, just curved from being pulled.  What amazing news!!  He also had a good plan for getting accurate x-rays in the future, so that we can better judge how her scoliosis is doing.  He's also on board with coordinating her heel cord lengthening surgery (the one he would do) with the spine detethering surgery.  The bummer is that she will have a cast on for 6 weeks, which will keep her out of the pool, but between the lengthening surgery and the cord release, we hope to keep her left leg/foot nice and flexible.

So that's that!  We have a new orthopedic surgeon and we are hopeful that we will get great care with him.  God really answered our prayers!  Thank you for joining us in prayer!

Saying Good-bye is Hard!

A few weeks ago we found out Dr. Segal, the girl's orthopedic surgeon, is leaving to practice in another state.  I was really, really bummed, as he's seen Madi since birth, but I scheduled a last appointment with him to try and get our ducks in a row.  We were supposed to get in with him next week, and then he was going to move in four months.  It was important that I talked to him because he wants to do a heel cord release on Madi during her back detethering surgery, so we were needing to discuss that, but also trying to appeal insurance to try and get Madi's Rifton Mobile Stander covered, so he was going to do a peer-to-peer for me and try to get it covered.  Today I call to ask his nurse a question, only to find out he's gone.  Just... gone.  He left four months early.  I am  SO bummed.  Dr. Segal had a passion for kiddos with spina bifida.  He came to all the local spina bifida association events, speaks at the yearly spina bifida conference, and was always involved.  Instead of looking at my girl's diagnosis and level, he'd look at them for who they are.  This is something that so many doctors do not do, but it is so very important.  He was pro-walking, and was always supportive when we needed new leg braces or new equipment.  I am just heartbroken to have to see someone new, especially because I now have no idea who to choose for Madi's heel cord release surgery, and this person will be totally new to us.  Sigh.  Please be praying as we work through trying to find a new orthopedic surgeon, especially one that is pro-walking and will advocate for the girls.  I am hopeful that I have found one we will like, so I am going to try to get in to them ASAP.  I know God's got this, and He has someone amazing in mind for us, so please pray we find this person quickly (hopefully the person I have picked out will be wonderful!!), so we can have peace of mind about her upcoming surgery.  Thank you!