Hope

Rylee had her upper endoscopy done and all the biopsies were normal.  I can't even tell you how disappointed we were that we didn't find anything.  I had hoped for something to just pop up that we could easily fix, all problems solved and Rylee would grow to be a 5' 5" well proportioned, curvy lady.  But everything was normal.

She got her hearing aids.  They're baby pink with pink glittery ear molds.  They are 100% girl.  She keeps them in.  She helps remind me when we forget to take them out at bedtime.  She keeps asking "what's that?"  "SOUND"!  She hasn't realized that even though she hears everything louder, that she doesn't need to talk to loud! 

We also had a visit with Genetics.  Kris and I both accompanied Rylee to this appointment.  Dr. Giampetro said that at this time there are no contradictions as to growth hormone therapy.  However, he strongly suggested that we weigh the decision on the possible outcomes.  We got a strong vibe from him that he wouldn't recommend it.  I did a little research on GHT and he may be right.  It all comes down to that my hope of 5' 5" is never going to happen for her (or me!).  She will never be average height or weight.  Unique sent me a leaflet of Rylee's exact chromosome deletion that related to 39 people. Rylee fits right in with most of them.  Though, she had the birth weigh of at least half of the smallest baby of those 39, she still has many of the same characteristics.  Rylee's deletion is one of a kind.  None of those 39 people have exactly what she has.  The deletions of those 39 are usually larger.  Rylee's deletion is included in those 39's larger ones.  I read that leaflet a couple of times.  I now have a new hope for Rylee.  5' 5" is considerably unrealistic.  There were some of those 39 that are now adults.  That are living normal lives, socializing, going to college, dating, marrying.  That is my hope for Rylee.  College, rent, grades, friends, driving.  Driving will be more difficult for her but I hope she gets the opportunity to do it. 

I know that Rylee is here with us to make a difference in this world.  She's going to change lives.  She's going to be so amazing.  She has came too far, overcame too many obstacles to not be amazing.  I have hope for her.  I hope her personality never changes.  I hope the kids are welcoming and not cruel in school.  I hope she will be all she can be.  I hope she will live a fulfilling, wonderful, life changing life.  And I am excited to be in her corner, her #1 fan, her cheerleader.  She sure has changed my life, I owe it to her!