Tuesday, March 18, 2014

She Will Write Her Own Story

We finally met with the geneticist, Dr. Saenz, last Thursday.  I had it imprinted in my mind they would want to do a whole work up of Mila.  I honestly thought she was going to be another statistic they would add into their studies.  She probably will be to some extent, but I tried to get as much knowledge through my own efforts.  Hence the dental and vision exams.  Michael kept reassuring me, there was not much more they could do.

Our visit did not take all day...in fact it didn't even take all morning.  They came in with calm voices, smiles, and encouragement.  Our genetics counselor, Kristina, shared with us, the portion of Mila's chromosome missing is actually the the most critical portion.  I believe there is only a few other kids in the 15q24 group that are missing Mila's same portion of their chromosome.  Back when Mila was first diagnosed, I googled her exact chromosomal "loss" number (15q23q24.2) and the info I came across was daunting.  I read it several times over thinking..."this isn't Mila!"  Obviously, Mila has this syndrome...but these kids this article described, were in no way, shape, or fashion, our Mila.  It was that moment that made me realize how blessed we are!  Our biggest medical problem has been recurrent ear infections.  We have had no hospital visits, no medical complications, no surgeries!  How can we not be grateful for these obstacles?  I feel like we can overcome anything!

15q24 microdeletion syndrome is very broad.  There is no black and white.  Meaning, they cannot determine Mila's outcome.  I couldn't have prayed for a better scenario.  I don't ever want anyone telling me what Mila will be like in 5 years, 10 years, etc.  We promise to give her everything we possibly can to maximize her function.  I will fight for her until I can't fight anymore.  She will be the exception!  Dr. Saenz told us, "Mila will paint her own story.  Each day is a new day.  Each day is a milestone."  I seriously could have kissed her on the spot! These words have been my words since day one!  Before Mila was born, I told Michael many times, "I just want Mila to be different."  His usual response, "don't worry babe, if she's anything like her mama, she won't be like anyone else."  Well, Lord, 15q24 syndrome wasn't exactly what I had in mind, but we'll take it.  How right Dr. Saenz is!  Mila will define who she is through our journey.  It is up to Michael and I to provide a life for her where she can grow and prosper.

Our BIGGEST celebration this week.... Mila has taking the initiative to pull up to stand!  This is HUGE for us!  It is her gateway to walking!  For months now, our prayer has been, we want to celebrate her 2nd birthday as a "walker!"  The last 24 hours of motivation and hard work she has put in, lets me know, we are on another uphill climb!  I'm so proud of my girl :)  I love her soooo good!

God's Country...Our view everyday!