Now that I have loads of time on my hands, since Avery is back in Boston, I will update the blog. First, I will transfer all the care page posts and then add some pics. Thank you for the continued prayers for Avery. Love you all.

October 18,2012
Avery had a bit of a better day. They were able to figure out the right amount of medication to keep her comfy and go down some on the vent settings. Hopefully we will continue moving forward.
I went to my first EA family meeting (new since the last visit). Got to meet some nice new families, one is from Greensboro, NC.
I was able to get another closet room (sleep space) but I dont know how much sleep I am going to get. They are working on something on the floor below and ALL I can hear is hammering and drilling. I took some OTC sleep meds. I hope I can pass out soon. Things like this happen to me on a daily basis. It's almost comical.
Please continue to pray that the doctors will have Avery on the right amount of medicine and that her fever will go away and she can be fully awkae soon. Thank you =)

October 17, 2012
There was an earthquake yesterday.
Today someone got shot in the head outside the hotel Aiden and I were staying at last week.
I WANT OUT OF BOSTON.
They restarted Avery on the paralytic yesterday and then took her off of it this afternoon with **hopefully** a better plan. She was moving like crazy right before I left (but not really awake). They somehow need to keep her comfy until she is ready to have the breathing tube taken out. I am so ready for this part to be over. I just want to hold her.
Sleeping in her room last night was terrible. Every single person that came into the room was so loud. They laughed and talked and carried on like I was sedated too. Thankfully I was able to get the last sleep space (closet) tonight. If anything, at least it will be quiet and dark.
There is an EA meeting for families tomorrow (something new since the last time we were here). That should be interesting.
Aiden started back at school today. I don't think he was very happy about it. Please say a prayer for him too. This time around is going to be harder on him now that he is a little older and understands things more.

October 16, 2012
well they took off the paralytic meds just to put them back on again. Avery was moving too much and they were worried she would pull out her breathing tube. No one has said how long they will keep the meds on this time, only that they need a better plan. Frustrating. They have no rooms at family housing or the family sleep space (a.k.a the closet) so I am sleeping in the back of Avery's room on the window bench. At least I have a nice pillow. I get did to eat lunch with my friend Rebekah and her family (the only bright spot in this horrible day).
Kevin and Aiden made it back home safe and sound. I miss them so much already. The family housing has an opening from the 26th through the month of November so I am trying to decide how/if to bring him back out here.
Praying tomorrow is a better day.

The boys are gone =( They left early this morning. I can not believe a whole week has flown by. Thats almost unheard of (for me) here in Boston. Aiden did a really great job of keeping us busy and laughing. He was well behaved and I think he really had a good time. Between the ball machine, the elevators, and being in charge of measuring Avery's urine and chest tube drainage (I know it sounds gross), he had a lot to do to keep busy. I got more comments on his blond blond hair than I could keep up with. So now its just me and Avery. They took her off the paralytic meds today. She is moving a little but still completely sedated. They had to tie her hands down =( It is so sad looking. I want my sweet smiling girl back! Made some new Amish friends. (I am pretty sure they are Amish). They are really nice and they made me a beautiful leather keychain with Avery's name on it (by hand!). The weather is supposed to be nice this week. Not sure how much I will actually go out, it's just not as much fun to explore Boston alone.
Big thank you's to Jen for the Bed, Bath, and Beyond gifts (that pillow is wonderful!!!) to Karen for the magazines, and Dad & Karen for the toys.

October 13, 2012
Avery was in surgery yesterday from 8:30 and did not get up to her ICU bed until 10pm. What a long day for everyone. They were able to find and repair the hole in her esophagus. From a surgical standpoint everything went well. She is sedated until at least Monday. She will have to go back in for a scope in about 10 days and then of course we have to be here until she can be weaned off some of narcotics. She was a good girl and was nice and stable today so we decided to get Aiden out of the hospital and take him to the Boston Children's Museum. He had a lot of fun and was super excited to ride the train.
I am trying to enjoy the last few days with the boys before they have to fly home.
Some people have asked for our hospital address:
Avery Knight
Boston Children's Hospital (7 South PICU room 15)
300 Longwood Ave
Boston, MA 02115

October 12, 2012
They just took Avery back for surgery.
Yesterday they were saying they wouldn't be able to get her in until next week. They came in the room at 5:50am that they would be taking her back for surgery at 6:30am. Aiden and I jogged from the Yawkey to get here in time (and then they were not sure if they would have an ICU bed so it was't until 8:30 that she went back).
Thank you for all the calls/texts/messages/emails. Please keep the prayers coming.
This is the first surgery since Jan. 2011 that I have had someone here with me. I feel blessed that Kevin and Aiden are able to be here. Makes it a little easier.
We are also praying for our friend Camden who goes in for a dilation today and even though we LOVE having them here at the same time, we want them to go back home to Kansas City!

October 8, 2012
What.an.exhausting.day.
Avery went to get her picc line around 10. We had to wait an extra hour and a half in the waiting room because they were behind. She finished up with that about 1:30. We waited in recovery until almost 4 to get a swallow study. I was able to get a quick bite to eat at lunch with my friend and that has been it. Avery has not let me put her down, much less walk out of the room.
I am hungry and tired.
On the bright side:
Got to have a quick visit with our old "roomate" Sandy, who looked fabulous and has a great new job here at the hospital (she also left me icecream with sprinkles in the freezer!!!)
Had a quick lunch with my friend Rebekkah and got to vent
And our friends Kara and Jamie stopped by this evening for a quick hello. If I could have friends like that here everyday, this would be a smidge easier!
Dr. Jennings is out until Wednesday so we wont have a surgical plan til then. Keep praying.

October 7, 2012
I can not believe we are back here.
Though it almost feels like we never left and being home for a year was all a dream.
Since I have time, here is what happened: On Sunday I noticed Avery's thoracotomy scar looked swollen. Monday I tooker her to her doc and he said it was probably nothing but sent us to get an ultrasound just to be sure. The ultrasound showed a small "superficial" abscess that was close to the skin line. No one was worried. They put her on antibiotics just incase. By Wed. this small spot had grown to the size of a golf ball. Still no one at her doctors office seemed worried. (They had also tried to drain it on Monday but couldnt get anything but a little blood, which they sent off but it never grew anythind). I spent Wed. through Friday calling but I felt like everyone was kinda blowing me off. Friday right before they closed I called and said I thought it was going to burst and they had us rush in. They didnt even have to lance it, it popped open when they prepped it. And out came a lot of "stuff". We were admitted to the hospital to get IV antibiotics and a CT scan. The CT scan showed that Avery had a leak in her esophagus that formed a fistula through her chest wall and out through her old surgery line right to the scar. No one I have spoken with knows how or why. Our little mysterious Avery. Everyone does agree that it is a miracle that she did not get very very sick from this. Looking at her you would never guess that she has a leak and a fistula. We arrived in Boston this afternoon via med flight. This had to be the worst one yet. I think the transport girl had to reassure me twice that the plane wss not falling from the sky.They even turned on the ambulance sirens coming in so we could get through a Columbus Day parade. Many these Bostonians take their holidays serious. I think the Charlotte based transport team got a little nervous when they saw how crazy of an ambulance driver we had.But I will take a crazy ambulance driver over a crazy taxi cab driver anyday here. We have seen all kinds of familair faces today, all commenting on how big Avery has gotten and how good she looks. Everyone should be back at work tomorrow so hopefully we can get a plan in place and maybe some questions answered. We have our private room with a view (that now includes a major construction site). Our excitement for the day included taking a wagon ride to the cafeteria to get hummus and a diet coke, looking at the pretty garden that they are going to bull doze soon (it was too cold to go out), and meeting up with our friend Rebekah that is here for a short stay with her little guy. It is going to be very difficult to keep Avery entertained this go round. She is sleeping soundly now but they will be interrupting her beauty sleep shortly to put a new IV in =( Kevin and Aiden arrive on Tues. We have no idea where we are staying so say a little prayer that it all works itself out and say a big prayer for Avery, the road ahead is not an easy one. And thank you for all the messages, calls, texts, ect.

Finally, a chance to do some blogging! I have the best intentions of blogging daily (or at least weekly) but the days always fly by. and as soon as the kids lay down and I tidy up a bit, I am ready for bed too! The summer has been good to us so far. Here is a little of what we have been up to:

working on some pins from pinterest. most have not really turned out they way they were supposed to but we still had fun anyways. 

Avery's first ride on the big bike. She really enjoyed it. 

Helping do laundry

silly string fun

It has been so hot that we pull out the hose and/or sprinkler daily

playing a little dress up

celebrating the 4th a little early (before our favorite neighbor friends moved)

Avery is working on eating Cheerios (at least that is healthier than her cheese puff addiction)

My little firecracker. Aiden better watch out as she gets older

Thank you Aunt Pam for letting us crash at your beach house. We had so much fun. This was Avery's first trip to the beach. And Aiden had a BLAST! He loved the sand and water.

some of the relatives

Aiden and his pal Pluto (who he LOST at the beach) scroll down for the Reunited with Pluto video

Aiden reunited with Pluto

Feels like summer! We have been busy this past month!

Went to Deadwood with our neighbor friends =)

We had a lemonade stand. Our neighborhood was great. So many people stopped by to buy a cup from the boys. They actually made some good money!

Avery just chilling out while the boys worked =)

We enjoyed a beautiful rainbow

We all had fun playing and listening to music at Sunday at the Park

We celebrated Kevin's 30 something birthday! Aiden and I tried to make little cakes that looked like cars and trucks. Major fail but we still had fun.

Avery has been busy pulling up to stand.

Aiden has been working on his golf swing

We took a trip to the Pine Knoll Shores Aquarium and Fort Macon

We have splashed around in the "pool" to stay cool on the hot days

Aiden and Avery love playing on the trampoline. May not be a bad investment so that Aiden can get all his energy out ;)

Aiden showed no fear, getting right into Grandma's pool

Slip and slide fun

Next up is our big road trip to Maine.

And here is a little video of Avery I made to show just how far our little miracle has come.