We made it to NY on Tuesday, and Nora had her surgery Wednesday. It was only two hours this time, which was nice.  I thought they were going to work on the area under Nora's right eye, but when we talked with the Dr before surgery he said they were going to work on the chin area.  It really doesn't make a difference, it'll all get done eventually:)  
The Dr was very happy with how the surgery went-thank you for praying! Every time I walk her back to the operating room and leave her on the table, it makes it so much easier knowing that she is in God's hands, and that she has many, many people praying for her. 
It took her a while to get off oxygen after the surgery.  She most likely just had a bunch of gunk in her lungs that she needed to cough up/get suctioned out. They did a chest X-ray at midnight the first night we were there, and she wasn't too happy about it. She was really fighting us, which wasn't great for the x-ray tech, but all the screaming and squirming helped her cough up a bunch of secretions, and she started breathing better after that:) It was a long, sleepless night, but the next morning she was able to get off the oxygen. They wanted us to stay another night for observation to be safe, so we got to hang out at the hospital for another day.  It wasn't the most fun for the adults (my sister Tonya came with us for the beginning of the trip) but Nora had fun walking up and down the halls, schmoozing the doctors and nurses:) We were all very ready to leave the next morning, but ended up not being discharged til 3:30 because the doctor hadn't sent the paperwork and was in surgery:-/ But we eventually made it out! We picked up Nora's prescriptions before dropping Tonya off at the airport, and then headed back to the RMH in Long Island. (thank you for your help, Tonya!)

Nora fell asleep pretty early Friday night, and then slept in til 10 on Saturday-that was SO wonderful.  And so good for her (and me;-)  You just don't get good rest in a hospital.

My sister Jenna flew in Sunday morning-it is so nice having another adult! There are a lot of people here at the RMH, but everyone is busy with their own appointments and things.  And when you're chasing a busy little girl around, it's hard to have a real conversation with someone else that is also trying to keep tabs on their own little munchkin:)

Sunday morning Nora woke up with a little red spot on her cheek, and this morning (Monday) she woke up with another red patch near her right ear.  She had a follow up appointment this morning, so I was able to ask the Dr about it.  He thinks it is a reaction to the antibiotic she is on, so she is stopping the antibiotic and changing one of her other meds.  So hopefully that will take care of it.  We would really appreciate continued prayer for healing and protection for infection!  You could also pray that her heart rate would stay above 60.  Her heart rate has been lower than usual at night, which is normal for her when she is on steroids.  When her HR goes below 60, her monitor screams, and I want to throw it out the window;-) Last night it dipped more than usual-I am hoping that will not repeat tonight! She seems to be feeling great though.  You would never know she just had surgery.  She is running around, making lots of new friends and having a blast with all the toys here. 

She will have her stitches removed on Friday morning (under anesthesia this time) and then (as long as everything goes well) we fly home Friday night.  Thank you so much for praying-we are so grateful for how God has been working in this little sweet cheeks! 

It won't let me upload pics at the moment, and I don't want to stay out here any longer (I don't get wifi in our room, so I am sitting out in the hall) I'll try again later;-)

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