Thursday, April 25, 2013

The results are in...

...and they're negative.  

Seven months ago I wrote a blog saying Natalie's results from the next generation DNA study should be coming in, within the next few weeks.  Five months later we did finally get her results.  This type of test covers what is referred to as mapping the human genome.  It covers approximately 80% of the genes that make up our bodies.  It helps explain why we think and move the specific ways we do as well as determines possible flaws in our DNA.  Our hope was to get a little closer to knowing what's wrong with Natalie and how we may help her as well has future babies in her position.  We went for a formal meeting where they told us that all of Natalie's results came back normal or in the medical terms, negative.  In fact the one test she had that came back with positive results when she was still in the NICU was redone and came back negative this time.  We find ourselves in the same position as always of just not knowing.  The doctor told us that they would not give up on looking for what is wrong with Natalie but they are lost as to where to go next.  He said that most likely anymore testing done will be the results from some different research project he finds and enters Natalie.

With all of that said, I want everyone to know that Natalie is doing great!  She is learning to walk.  The 2 curves in her back have stopped progressing which means her back brace is working.  She recently had surgery to correct her clubbed feet which has done a phenomenal job.  She's starting to get a little daring and letting go to try to stand on her own.  Her voice is getting louder and her vocabulary is growing.  

She still presents us with some challenges such as loosing her energy quicker than an average 23 month old.  She still cannot move any facial muscles above her bottom lip therefore she can't make sounds such as the m, p, and b sounds, smile, or blow.  She's still using a bottle 50% of the time.  She tires using a sippy cup and cannot close her mouth around a straw.  She understands that she is older and we can tell she's starting to get irritated that she can't do more.  She wants to get down and crawl next to Isaiah when we're playing outside or walking through a store.  She wants to eat everything that we eat but she doesn't have the stamina to eat tougher meats like beef.  

At the same time Natalie continues to astonish us with how she does things differently.  The average child when they start talking say only the beginning of words.  For instance, baby would be "bay" or Isaiah would be "Isay."  However, Natalie does it the other way.  Baby, is "aby" and Isaiah is "Saiah."  She also gets very vocal at the doctor's office.  The last time she was casted she told the doctor, "Go, Go, Go!" while pointing to the door.  The last time at the dentist she pulled her head away and said, "ALL DONE!"  Isaiah just told us the other night after taking a bath with her, "Momma, Did you know that Natalie can talk!"  She also is starting to mimic the tone in people's voices buy using inflections in her speech.  

We have a lot of fun with our family and are so thankful that we all have each other and all of you out there.  Thank you for loving my family and please never forget that we love you too!