Thursday, August 2, 2012

WEEK 2 AT CHOP

Week 2 arrived and we were waiting on Micah to start swallowing better so she could get her MRI done. She had a couple bad days over the weekend so they kept putting the test off.  She had to be able to lay down without any machines going off for 45 minutes.  When I say "machines going off" I mean no drops in her heart rate from the extra saliva blocking her airway.  She started to handle her secretions(saliva) a lot better on Monday so they squeezed her in around 430pm. We rolled her down to get her MRI and gave her a million kisses.  I remember walking away thinking, "I hope she can lay still and keep her heart rate up because this test is HUGE." This test would obviously tell us if she has a fully functioning brain or not, which has been my BIGGEST worry!         


My dad, my sister Holly, and brother in law Tom came to visit us during the MRI.  We all went down to the CHOP cafe and had a nice relaxing dinner.  It was just what we needed because Bill and I were freaking out about the MRI.  After dinner we headed back to Micah's pod to see if she was back yet and she was just getting rolled in.  Our nurse Nikki said that Micah was like a rockstar down there.  Apparently everyone in the MRI LOVED her.  She said they all raved about how beautiful she was.  Nikki felt so proud and she was totally claiming Micah at that point ....LOL! Too cute.  She also performed like a CHAMP, she didn't have any heart rate drops which made us SO incredibly happy. MRI told us the results would be in the computer in about 2 hours but Nikki told us that's not always the case especially after 5pm on a weekday. So that's when we decided to head home and relax.  We told her we would call her later to check on Micah and to see if the results were in. Three hours had passed and we called and we got the most amazing news ever...... MRI was NORMAL!  OMG OMG OMG OMG.........such a relief.  It was probably the first night I was really able to sleep. Just knowing that Micah was going to be able to mentally express her love back to us was such a powerful thing. CAN'T EXPLAIN that feeling. 


You can just tell by looking at her eyes that she is completely communicating with us. 
She is saying "I love when mommy helps me exercise!" 
We've been doing a lot of Physical Therapy with her and she seems to like it. 



Later in the week we met with the Geneticists and they confirmed that Micah has absolutely NO dysmorphic features.  They measured her eyes, nose, legs, arms, hands, feet, and they even looked at her finger tips with a magnifying glass.  They were able to rule out a couple genetic disorders just by looking at the finger tips. It was REALLY cool to watch.  My friend Tracy was visiting at that time and she sat with me as we watched them evaluate Micah.  We were both amazed at the two Geneticists!


Nope, nothing dysmorphic about this little peanut!





At the end of Week 2 we were celebrating Micah's 2 week old birthday and the start of the OLYMPICS! In this pic she is cheering on Mommy's childhood friend, Carli Lloyd, who plays on our US Olympic Soccer Team. 



RECAP
So far we have found out that Micah's brain, muscles, & intestines are all NORMAL.  We know she doesn't have Prader Willi and she is not showing signs of dysmorphia. We are still awaiting results of her Chromosome test.  There is also some talk of doing a muscle biopsy but it will probably not happen until she is older.  It's really amazing that all of these tests are coming back NORMAL.  It's almost as if the doctors are in shock that they can't find the root of the problem. They always smile after giving us the results because its like a broken record "normal, normal, normal."  Which is SOOOOOOO amazing to hear, I would listen to that record for the rest of my life.  Please keep praying that the Chromosomes test comes back normal as well. 


      We Heart Micah!


1 comment:

  1. Great news!!! So happy to hear all the good news!!! I hope she is able to overcome her weaknesses and come home soon! She will continue to get stronger everyday- as will you!!! Thinking of you and praying for your family!

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