7-10-15

Nora has been doing really well! I usually make excuses about why I haven't updated, but really-this time the reason is because there wasn't much to say! No news is good news;-) Nora has completely recovered from the infection over Memorial Day-thank you for praying!  Once she was able to start the Sirolimus again, the swelling on the right side of her face went down, and the new incision was able to heal.  

It has been a really nice summer so far. Last summer, Nora still needed to be hooked up to machines for most of the day, so we couldn't go out much/for very long. Now she is wireless and goes everywhere!  She loves being out and about and in the middle of everything.  

Before I go crazy with pictures-we are heading back to NY next week.  Nora has another de-bulking surgery scheduled for the Wednesday, the 15th.  This time they will be working on the front, right side of her face under her eye. We would really appreciate prayers for protection for Nora and her sweet, sweet smile during the surgery. Oh that smile melts my heart. Please pray for wisdom for the doctors and all involved in her care.  Last time she lost a lot of blood during the surgery, and there were a couple issues the days following-please pray that there would be no complications and for a smooth recovery! And also that she would stay healthy in the days leading up to our departure.  I don't like being a germ freak, but I don't want a little cold to throw us off schedule! (For those of you that may have heard we were having trouble finding a place to stay (the Ronald McDonald House in Manhattan is full) we are going to be staying at the Long Island RMH and commute.  You could pray that they will have room, bc there is a small chance that we could show up and not have a room!) 

We are so thankful for how well Nora has been doing, and how smoothly things have gone so far.  We know it is only because of God and all the amazing people that are so faithful in praying for her.  I was recently talking to a friend that had just received good biopsy results-she was saying that she knows the good news was only because of God and prayer. Her doctors had been pretty concerned about it, but she had many, many people praying for her.  It was such a good reminder to give all glory to God.  Sometimes when we get good news or things get better, it's easy to think "phew-that was close!" and forget about all the prayer and the powerful God that protected us from who knows what.  (That makes me think of the lyrics from that ancient song, Angels,  "Near misses all around me, accidents unknown, Though I never see with human eyes the hands that lead me home" good old Amy Grant;-) Anyway, with Nora, there are so many times (every day really!) when things could have been so much worse, but because of her faithful prayer warriors, her little light has continued to shine bright and happy, and we are so thankful for how God has been answering the prayer on her behalf.  This little girl certainly keeps her angels on their toes! She climbed/fell out of her crib the other day when I had my back turned for two seconds. I turned around just in time to see her diving over the side of the crib. But she was fine! She is such a monkey/daredevil. The other girls were/still are as well, but it makes me more nervous with Nora because of her trach.  But, so far, we have not had a real trach emergency.  (In the beginning, there were things that felt like an emergency/were scary, but now we know what's normal/what to do;) With each of her surgeries/procedures, there are so many things that could happen, I don't even want to think about it. But God has protected her, and she has exceeded everyone's expectations from day one! We want to thank and praise God for the amazing work He is doing, and thank you to all of you that have been continually praying for sweet little Nora.  We are so grateful! In addition to all the prayer support, we are incredibly thankful and grateful for all of you that have been so generous financially, making these surgeries/trips to NY possible.  We will never be able to thank you enough. We thank and praise God for you, and pray His blessings on you in return, and that we will be a blessing to others as well. 

Now for some pictures of this adorable little miracle...warning, there are a lot:)

A few weeks ago we were at a get together and Nora was being extra cute-I couldn't pick just one pose;-)  She was pretty excited to see Aunt Jenna (who had been in Spain the last year)

 Aunt Lydia got a good smile too:)

 Nora loved the little chicks at breakfast on the farm

 When Nora first figured out how to climb up the slide, she would sit at the top for a while, as if trying to muster the courage to descend;-)

One can never be too safe when walking around outside

 Oh I just love this face! And those sweet little hands!! This was the first time she was really interested in eating ice cream.  She usually doesn't like things that are cold or too sweet (she didn't get that from me!)

 She kept trying to share with her BFF Quincy

 Nora LOVES the guitar.  As soon as Evan gets home, she says her little version of "guitar" and makes a little guitar playing motion. 

Nora really likes water, which is kind of unfortunate, because it is very dangerous for her to be in water with the trach.  I brought the little pool for her when we were at our friend's pool, but she lost interest quick and wanted to be with the big kids.  I let her sit on the steps for a bit, but she was trying to dive in, head first, so that ended quickly.  

If you made it this far-thank you again for all the love and support! 

XO