How is it May already?

Every time I finish writing a post, I tell myself that I won't put off writing so long the next time. It's like when I tell myself that THIS handful of m&ms will be my last...good intentions, bad follow through;-)

Nora has been doing well.  Her heart rate issues have gone away-thank you for praying! They stopped soon after she finished her steroids, so we're pretty sure it was from that.  She did see the cardiologist, and he wasn't concerned since she wasn't having any other issues.  He did have her wear a Holter monitor for 24 hours, just to make sure everything was working the way it should, and everything looked fine.

While Nora was on the steroids  it made her extra hungry, which really helped with her oral feeding! She would eat a whole piece of string cheese or a whole container of yogurt in one sitting, whereas it would usually take her at least a day to finish just one of those things.  All the extra food helped her gain a little weight, which her GI doctors had been wanting to see. Unfortunately, she got sick shortly after she stopped the steroids, and when she is sick, she doesn't want to eat by mouth.  She is now healthy, but she still isn't wanting to eat much by mouth.  She seems to gag or throw up if she eats anything that doesn't dissolve on its own.  We are thinking there might be a little flare up of the lymphatic malformation near the esophagus that is causing her discomfort?  Who knows. She seems to be doing fine besides that.  

One thing we've been really excited about is Nora's speech.  We have been teaching her sign language, which she has been picking up on really well.  She loves to watch "Baby Signing Time" (I would highly recommend the series-it is a great way to learn!) She is able to do quite a few signs, which has been very helpful. Nora has also been making a lot of noise which is SO fun to hear.  There have been a few times that we thought she may have actually been saying words.  The past couple days, she for sure has been saying "up" along with signing it, which is so exciting to see/hear! She is a constant reminder of God's greatness.  I remember cleaning out the baby car seat before bringing Nora home from the NICU-there were tons of cheerios and cracker bits left over from Belle.  I was a little sad as I cleaned them up, thinking that I'd never have to do that for Nora, since she would most likely not be able to eat by mouth.  But now, when I take her out of her seat, there are all kind of snack remnants underneath her and it makes my heart happy every time:) For a long time, Nora made absolutely no sound.  When she would cry, you could see on her face that she was NOT happy, but she made no noise.  After a while, we started hearing little squeaks every once and a while.  Now, she is starting to speak! Maybe eventually the excitement will wear off, but I still just love every little noise she makes:)

Next week is Nora's next surgery already! We leave Tuesday, May 5th, and her surgery will be on Wednesday, the 6th.  She will be having another de-bulking surgery this time. They will be working on the right side by her ear and a little under her chin.  This will be a big surgery. Please please please pray for our sweet little girl.  There are nerves that control her sweet smile and other facial movements that could be damaged. Please pray for steady hands for the surgeon and everyone involved in her care, and protection for her sweet smile and other facial functions.  

I don't know why, but I am more emotional about the surgery this time.  Maybe because she's older? I just love her so much and wish I could spare her from any pain.  I don't like being so helpless.  I was looking back at pictures of her incision right after the first surgery, and it made me sad to think of my poor baby having to do it all over again. But I know it is so necessary, and I am so grateful that she has the opportunity to receive such great care.  And most importantly, I know that God has Nora in the palm of His hand, and whatever happens, it will be good. And this surgery will be so helpful for her. It should allow her a lot more movement (right now she can't really look down or to the right easily) and hopefully help her sight and hearing.  I don't know if I've ever mentioned it before, but because her right eye doesn't always open as wide as it should, her right eye isn't as strong as it should be and has trouble focusing.  It also wanders at times, so we are supposed to try to put a patch on the good eye for a couple hours a day.  Nora is not a big fan of the patch, so that doesn't happen as much as it should.  We are hoping that eye will be able to open wider after this.  She also has hearing loss in her right ear due to compression of the ear canal.  The pink head band that she always wears (or should be wearing;) is actually a bone-conducting hearing (the hearing aid is usually hidden behind a flower:)  We are hoping that this surgery will help to open up the ear canal, and eventually eliminate the need for the hearing aid.  

We are so thankful for all of you that have been following Nora's story-we are so encouraged by you.  When I start thinking about all the things that could go wrong, I have to stop myself from thinking about it and force myself to just pray.  It is so comforting to know that so many of you are praying with us as well! Please pray that Nora will stay healthy so that we can go to NY as scheduled.  And please also be praying in advance for protection during the surgery and Nora's sweet little face. Thank you!!

The Lord is righteous in all his ways and kind in all his works. The Lord is near to all who call on him, to all who call on him in truth. He fulfills the desire of those who fear him; he also hears their cry and saves them. Psalm 145: 17-19