Ramya's New HKFOs... Spina Bifida Won't Keep Her Down!

Ramya had KAFOs (leg braces that went up to her thigh), but she was really struggling with walking and posture, so we had her fitted for HKFOS (leg braces that go up to her tummy).  Ron, at Hanger, did an awesome job as usually, and she loves them!  I can't wait to work on walking with her.... spina bifida isn't going to keep this girl down!  Here are a few pictures of her new braces....

 

 

We have two appointments downtown this week, so I decided to take the kiddos to Whole Foods for lunch to make our first trip special.  The love their gluten free pizza (you can even get it with dairy free cheese!!), and also enjoyed some sorbet for dessert. They were pretty happy kiddos!

 



Thursday we head down to see Dr. Goggins, our new orthopedic surgeon.  We are praying we can get a good picture of Madi's scoliosis and a clear game plan on how to proceed with detethering surgery.  I will keep you updated!

Two Appointment Updates and My First Kiss!

Whew.... another busy week!

Tuesday we rushed off to Mesa to see our neurosurgeon, Dr. Moss.  He reviewed Ramya's CT scan and shunt series.  He's stumped as to what kind of shunt she has and why they put it in how they did, but the good news is, it's working!  He has no plans to touch it since it's working, and that is exactly what I wanted to hear!

Today we went down to Ron at Hanger and he got her all set up for KAFOs (leg braces that go from the ankle to the thighs).  He said he'll have them ready in about 3 weeks, so that's awesome!  We can't wait!  Ramya did great during the appointment and was very excited to pick the purple butterfly print for her new braces.  We set up an appointment to get her braces and get Madi's fixed (she grew again and needs them adjusted) in 3 weeks.  Ron and his office assistant were very excited to meet Ramya.  They have been waiting for her!

 

 

Tomorrow we are off to the pediatrician to have a little lump on Ramya's left "nee nee" looked at.  It just popped up and it's bothering her, so I wanted to get her in ASAP.  It feels like my cyst does, and I've never felt something like that on a child before, so we're off in search of some answers.

 

Saturday is our big open house to celebrate Ramya and so that all of our friends and family can come and meet her and spend time with us.  We are busy getting ready and can't wait!  We hope to see you all there (well, those of you that live locally that is ;))!  If you need our address, please email me at jamie_lugo@hotmail.com :).

 

OH!  Before I forget, I got my first kiss today!  She planted a big one right on my nose!  I give her kisses all the time, but I haven't gotten a spontaneous kiss from her until today.  Now I officially have gotten a hug, a kiss, and told "I love you".  Life is good!