Wednesday, October 22, 2014

Our little go-getter!

9 months!
First of all, thank you to all our awesome prayer warriors on behalf of our Amazing Amelia!  We truly believe He hears each and every one of your prayers!  A few weeks ago, Amelia had an MRI/MRA to get a closer look at her aorta dilation and the rest of the heart and also to look at the arteries from head to pelvis to rule out any other aneurysms.  We had a rough start with some miscommunication over what was actually ordered and what needed to be done, but once the kinks got worked out, it went pretty well. Through it all, Amelia was a rockstar!  We were so proud of her!  She did have a reaction to the anesthesia with some nausea and vomiting, but they gave her some anti-nausea meds and she was good to go!  We were already seeing smiles before we even got in the car.  

We received a call just over a week later and they did not find any other aneurysms!  Praise the Lord!!  They did find that Amelia has tortuous vessels in her neck, however we were not surprised by this news since a lot of LDS (Loeys Dietz Syndrome) patients have this.  Basically, her vessels are twisty, where normally they're straight.  But, as far as we know it does not cause any issues, praying that's the case!  Her heart remains stable which is great news!  Although, her cardiologist did increase the dosage on her meds because in talking with the cardiologists that were in on the MRI, they agreed that even though the dilation in her aorta remains stable, she's still not in the clear.  Pray that the increase does not cause any side effects and continues to do it's job!  

Right now, we continue to watch Amelia be her amazing, very determined self.  She does not stop!  She has been crawling for well over a month (with and without braces) and is now trying to pull herself up on everything!  In fact, one of my favorite moments was when she crawled for her therapist for the first time...she was so excited, she started screaming!  Oh, how that made my heart leap for joy.  Amelia has some wonderful therapists that have a special bond with her; although, she's been seeing them every week since she was only 2 weeks old!  I would say that makes them a pretty special part of this journey.  Thank God for these blessings!  

"The Lord is my strength and my shield; my heart trusts in Him, and I am helped.  My heart leaps for joy and I will give thanks to him in song."  Psalm 28:7

As part of her therapy, they continue to work on getting her knees to straighten out.  She has certainly made progress, but they're still contracted (unable to straighten), with her right leg being a little tighter.  So, now they'll be adding some equipment/gear to help straighten them even more.  Last week she was fitted for a SPIO and knee immobilizers.  The SPIO works on her trunk and the knee immobilizers gently stretch her knees.  Her therapist is also working on getting her into a "stander."  That's basically what it is and does...helps her stand.  She has the SPIO (and knee immobilizers) on in these pictures.  

Amelia is almost 10 months now and has exceeded our expectations!  She doesn't even seem to be bothered by any of this and is just so happy!  It's been so fun to watch her grow!  We can't wait to see what else God has planned for her!  

"We will shout for joy when you are victorious 
and will lift up our banners in the name of our God."  Psalm 20:5

 THANK YOU again for all your prayers!!!  I really mean it when I say it means so much!