Bailey Pentz Bailey’s VBT Journey

First post: Feb 9, 2020 Latest post: Feb 27, 2020
When Bailey was 9 years old we went to her yearly physical with her pediatrician.  Her doctor had her bend over and touch her toes and was not pleased with what she saw. So they decided to see her again in 6 months and to just keep an eye on it.  At her next appointment there wasn’t much change so once again they decided to reevaluate in 6 months.  When Bailey turned 10 we went in for her physical and once again the doctor had her bend over and touch her toes.  This time she was not pleased with what she saw there was a significant difference from the last time.  At this point they decided she needed to go to see an orthopedic doctor at Children’s Hospital of Pittsburgh.  I have to admit I was so stupid and foolish I thought we would be wasting our time.  Mainly because as a teen I had been told I may have it and my mother took me to Shriner’s Hospital in Erie and they decided it wasn’t anything to worry about and I never gave it another thought again.   Well walking in that day I thought let’s get this over with then we will go shopping after.  Well that isn’t the reality we got that day.  My precious daughter didn’t get a good report. The minute the x-ray came up on the doctors computer screen and my heart sank.  There it was screaming back at me this isn’t nothing, this is serious business.  Her curve was 38 degrees that day.  The doctor looked at me sadly and said, “Well we are going to be on a long journey together this isn’t something that will go away or an easy fix.  Your daughter has a long road ahead of her. “ He prescribed her a Boston Brace to be made and she had to wear it 18 hours a day.  I left that room in utter shock.  Once in the waiting room the tears began to flow.  I cried with a broken heart and started making calls to the important people in our lives.  Meanwhile my daughter was a rock she showed no emotion. I was supposed to be strong for her and here she was the strong one in the relationship.   At one point I said “Why aren’t you afraid why are you not upset?”  And she looked at me with all the confidence in the world and said, “Because God is going to heal me.”  She had no doubt she had faith enough to move a mountain.  This baby girl I raised was putting me to shame.  All I could do was cry and she was a rock.     We had to get her brace made a week later and that was rough.  Watching her get measured to wear this hard plastic shell.  All I could think was why her, why us.  This will ruin her childhood.  Once again the tears flowed. A week later when it was ready to be picked up she put it on and looked so uncomfortable.  And she was so worried someone would see it.  Bailey’s self confidence was crumbling at this point she started wearing bubble/puffy vest every day.  She had one of those darn things  in every color.   She also began to act depressed and this is not Bailey at all.  Anyone who knows her could tell you she is a very happy person so this was very out of character for her.  This continued for a while until we discovered a support group in Pittsburgh called Curvy Girls.  We went to our first meeting and there were two other girls there.  This meeting changed our lives in more then one way.  (The most influential way I will go into later.)  At home Bailey had nobody like her now she was meeting other girls who are just like her.  She bonded with both those girls and I have become close with their mothers.  Through the support of that group Bailey gained confidence and lost her fear of being different and started dressing anyway she wanted not caring who might see what’s underneath.  That period in her journey was so rough but it was a learning process for me and now I can share with other moms there is hope  that their children will get past that time of adjustment too.  Our group has grown a lot since we started and it’s neat to be a founding member because I have a lot to share with the new members.   Along this journey there has been many ups and downs.  A few good things have happened.  One is that her very first brace was so well made that her Doctor said it was the best in brace correction he had ever seen.  She also started Scroath Therapy which is a specific form of therapy developed to help with posture for kids with Scoliosis.   She loved her therapist Kim.  She became one of her biggest encouragers and an ear for me to vent to.  On the down side of her journey only that first brace was a success.  Her second Boston was awful she didn’t even get a good correction while wearing it.  And the pain it caused her was awful.  I fought back and forth with the brace company for weeks.  I’d finally had enough and went back to her orthopedic doctor and begged him for help.  At that visit they made it more comfortable to wear but the correction was still not as good as he would have liked it.  My daughter has  always been compliant, she wore her brace faithfully.  Well the doctor accused her of being rebellious and maybe she just didn’t want to.  And I said no she  wanted to wear it and because of the pain I made her take it off because it needed fixed.  And he said to me “So you wanted her not to wear it and she wanted to?”  He shook his head at me and said, “Thank God one of you are making since.”  He said that to me 3 times.  I was so angry I decided at that point to get a second opinion.  She was in pain and in tears but I’m a monster for having her take a break until you actually get us in and fix it.   We did go for a second opinion at AGH hospital with a well liked physician  within the CG community.  However, he said although he would take her on as a patient if I really want.   He thinks I should stay put because her current doctor is a good doctor and he was doing the same thing he would and if we switched we would have to start over.  So we stayed and continued on.  When she outgrew that brace we decided to go with a new brace called the AT brace which is basically a generic WCR brace.  Everyone kept saying this is THE brace to get that it is a game changer.  Well for us it was the beginning of the end.   Because the brace is made of a hard plastic with no padding and it’s such an aggressive correction it caused bruising and a weird lump to form on her back.  I called the brace maker and he tried to give her some relief but said he wasn’t willing to jeopardize the integrity of his brace.  He said she will get tougher skin as she wears it.  But the pain and the tears were too much.  So we went back to her orthopedic doctor and he did a new x-ray and discovered she was now at 48.1.  He said we are at the end of our bracing journey.  He would give her 6 more months to wear the brace (even though it hurt her) then if nothing changes which he didn’t see happening we would have to talk surgery. He talked over her when she tried to speak and she was the patient.   We left that office that day just like we had 3 years earlier with me a blubbering mess and my daughter being a rock of strength and courage.  The tears continued to flow all day and I posted a sad post on FB.  Well best thing I ever did because one of the mothers I had met through the Curvy Girl Support Group messaged me and asked if she could call me.  Karen called me and told me about a procedure called VBT-Vertebral Body Tethering.  It is fairly new to the scoliosis community and not a lot of people meet the criteria to be a candidate.  In fact Karen’s daughter tried and was turned away.  She told me all about the procedure and she was just convinced Bailey would be a good candidate. You have to have between a  35-45 degree curve and still be growing.  Well as tall as my girl is she is still a zero on the risser scale (this is a scale they use to measure a girls growth and it goes from 0-5.)  She gave me a bunch of phone numbers to call and insisted I want Dr. Samdani from Shriner’s Hospital for Children in Philadelphia.  She warned me it may take 6 months to get in so call right away.  To my shock they got us an appointment in 2 weeks.   I couldn’t believe it.  I was such a nervous wreck the whole way to Philadelphia (so much so I drove my daughter and husband Josh crazy lol.) I prayed to God over and over again to please let her be a candidate. Almost begging him.  We came so far I didn’t think she or I could bare it if she was turned away.  After her examination and X-rays we found out she was a suitable candidate and Dr. Samdani would like to do the procedure within the next 4 months. He told us she was actually a Candidate for both fusion and VBT and he gave us all the pros and cons of both.  Which made the decision process even more difficult.  Bailey and I wanted VBT and would have signed up that day.  Josh needed more time to think about it.  Luckily 3 days after we got home there was another CG meeting.  And I found myself surrounded by 8 other moms and I came in and was like H-E-L-P.  All of them said they would go with VBT if it were their daughter.  Luckily after some internet research my husband decided on this as well but ultimately the decision was Bailey’s.  And she wanted the VBT and she want Dr. Samdani to be her doctor.  So we are are schedule to have her surgery on February 10th.   As upset as I get sometimes I have come to terms with it and all at once it hit me.  God is healing her just not the way we asked.  Your way not mine Lord!